WorldWideScience

Sample records for registries research databases

  1. Down syndrome: issues to consider in a national registry, research database and biobank.

    Science.gov (United States)

    McCabe, Linda L; McCabe, Edward R B

    2011-01-01

    As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources. Copyright © 2011 Elsevier Inc. All rights reserved.

  2. Conference Proceedings: “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks”

    Science.gov (United States)

    Oster-Granite, Mary Lou; Parisi, Melissa A.; Abbeduto, Leonard; Berlin, Dorit S.; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L.; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A.; Reeves, Roger H.; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F.; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R.B.; Maddox, Yvonne T.

    2011-01-01

    A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. PMID:21835664

  3. Down syndrome: national conference on patient registries, research databases, and biobanks.

    Science.gov (United States)

    Oster-Granite, Mary Lou; Parisi, Melissa A; Abbeduto, Leonard; Berlin, Dorit S; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A; Reeves, Roger H; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R B; Maddox, Yvonne T

    2011-01-01

    A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. Copyright © 2011. Published by Elsevier Inc. All rights reserved.

  4. Database and Registry Research in Orthopaedic Surgery: Part I: Claims-Based Data.

    Science.gov (United States)

    Pugely, Andrew J; Martin, Christopher T; Harwood, Jared; Ong, Kevin L; Bozic, Kevin J; Callaghan, John J

    2015-08-05

    The use of large-scale national databases for observational research in orthopaedic surgery has grown substantially in the last decade, and the data sets can be grossly categorized as either administrative claims or clinical registries. Administrative claims data comprise the billing records associated with the delivery of health-care services. Orthopaedic researchers have used both government and private claims to describe temporal trends, geographic variation, disparities, complications, outcomes, and resource utilization associated with both musculoskeletal disease and treatment. Medicare claims comprise one of the most robust data sets used to perform orthopaedic research, with >45 million beneficiaries. The U.S. government, through the Centers for Medicare & Medicaid Services, often uses these data to drive changes in health policy. Private claims data used in orthopaedic research often comprise more heterogeneous patient demographic samples, but allow longitudinal analysis similar to that offered by Medicare claims. Discharge databases, such as the U.S. National Inpatient Sample, provide a wide national sampling of inpatient hospital stays from all payers and allow analysis of associated adverse events and resource utilization. Administrative claims data benefit from the high patient numbers obtained through a majority of hospitals. Using claims, it is possible to follow patients longitudinally throughout encounters irrespective of the location of the institution delivering health care. Some disadvantages include lack of precision of ICD-9 (International Classification of Diseases, Ninth Revision) coding schemes. Much of these data are expensive to purchase, complicated to organize, and labor-intensive to manipulate--often requiring trained specialists for analysis. Given the changing health-care environment, it is likely that databases will provide valuable information that has the potential to influence clinical practice improvement and health policy for

  5. Understanding the patient perspective on research access to national health records databases for conduct of randomized registry trials.

    Science.gov (United States)

    Avram, Robert; Marquis-Gravel, Guillaume; Simard, François; Pacheco, Christine; Couture, Étienne; Tremblay-Gravel, Maxime; Desplantie, Olivier; Malhamé, Isabelle; Bibas, Lior; Mansour, Samer; Parent, Marie-Claude; Farand, Paul; Harvey, Luc; Lessard, Marie-Gabrielle; Ly, Hung; Liu, Geoffrey; Hay, Annette E; Marc Jolicoeur, E

    2018-07-01

    Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. We assessed patient's preferences regarding use of personal information to link their research records with national health databases, as part of a hypothetical randomized registry trial. Cardiology patients were invited to complete an anonymous self-reported survey that ascertained preferences related to the concept of accessing government health databases for research, the type of personal identifiers to be shared and the type of follow-up preferred as participants in a hypothetical trial. A total of 590 responders completed the survey (90% response rate), the majority of which were Caucasians (90.4%), male (70.0%) with a median age of 65years (interquartile range, 8). The majority responders (80.3%) would grant researchers access to health administrative databases for screening and follow-up. To this end, responders endorsed the recording of their personal identifiers by researchers for future record linkage, including their name (90%), and health insurance number (83.9%), but fewer responders agreed with the recording of their social security number (61.4%, pgranting researchers access to the administrative databases (OR: 1.69, 95% confidence interval: 1.03-2.90; p=0.04). The majority of Cardiology patients surveyed were supportive of use of their personal identifiers to access administrative health databases and conduct long-term monitoring in the context of a randomized registry trial. Copyright © 2018 Elsevier Ireland Ltd. All rights reserved.

  6. Current concepts in clinical research: web-based, automated, arthroscopic surgery prospective database registry.

    Science.gov (United States)

    Lubowitz, James H; Smith, Patrick A

    2012-03-01

    In 2011, postsurgical patient outcome data may be compiled in a research registry, allowing comparative-effectiveness research and cost-effectiveness analysis by use of Health Insurance Portability and Accountability Act-compliant, institutional review board-approved, Food and Drug Administration-approved, remote, Web-based data collection systems. Computerized automation minimizes cost and minimizes surgeon time demand. A research registry can be a powerful tool to observe and understand variations in treatment and outcomes, to examine factors that influence prognosis and quality of life, to describe care patterns, to assess effectiveness, to monitor safety, and to change provider practice through feedback of data. Registry of validated, prospective outcome data is required for arthroscopic and related researchers and the public to advocate with governments and health payers. The goal is to develop evidence-based data to determine the best methods for treating patients. Copyright © 2012 Arthroscopy Association of North America. Published by Elsevier Inc. All rights reserved.

  7. Uses and limitations of registry and academic databases.

    Science.gov (United States)

    Williams, William G

    2010-01-01

    A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. Copyright (c) 2010 Elsevier Inc. All rights reserved.

  8. The use of databases and registries to enhance colonoscopy quality.

    Science.gov (United States)

    Logan, Judith R; Lieberman, David A

    2010-10-01

    Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future. Copyright © 2010 Elsevier Inc. All rights reserved.

  9. Melanoma of the Skin in the Danish Cancer Registry and the Danish Melanoma Database: A Validation Study.

    Science.gov (United States)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David

    2018-05-01

    The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance, and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n = 200) and the Melanoma Database (n = 200) during 2004-2014, using the Danish Pathology Registry as "gold standard" reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI = 94, 99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87% and 100% in the Cancer Registry and 93% and 100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database is high, supporting their use in epidemiologic studies.

  10. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... Industry perspective on public clinical trial registries and results databases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...

  11. The EpiCom Survey-Registries Across Europe, Epidemiological Research and Beyond

    DEFF Research Database (Denmark)

    Gordon, Hannah; Langholz, Ebbe

    2017-01-01

    The 2015 EpiCom survey evaluated population, patient, and research registries across Europe. Information was collected from 38 countries. The registries included those falling within the remit of national statistics, hospital databases, twin and multiplex registries, inflammatory bowel disease [IBD...

  12. Quebec Trophoblastic Disease Registry: how to make an easy-to-use dynamic database.

    Science.gov (United States)

    Sauthier, Philippe; Breguet, Magali; Rozenholc, Alexandre; Sauthier, Michaël

    2015-05-01

    To create an easy-to-use dynamic database designed specifically for the Quebec Trophoblastic Disease Registry (RMTQ). It is now well established that much of the success in managing trophoblastic diseases comes from the development of national and regional reference centers. Computerized databases allow the optimal use of data stored in these centers. We have created an electronic data registration system by producing a database using FileMaker Pro 12. It uses 11 external tables associated with a unique identification number for each patient. Each table allows specific data to be recorded, incorporating demographics, diagnosis, automated staging, laboratory values, pathological diagnosis, and imaging parameters. From January 1, 2009, to December 31, 2013, we used our database to register 311 patients with 380 diseases and have seen a 39.2% increase in registrations each year between 2009 and 2012. This database allows the automatic generation of semilogarithmic curves, which take into account β-hCG values as a function of time, complete with graphic markers for applied treatments (chemotherapy, radiotherapy, or surgery). It generates a summary sheet for a synthetic vision in real time. We have created, at a low cost, an easy-to-use database specific to trophoblastic diseases that dynamically integrates staging and monitoring. We propose a 10-step procedure for a successful trophoblastic database. It improves patient care, research, and education on trophoblastic diseases in Quebec and leads to an opportunity for collaboration on a national Canadian registry.

  13. NIRS database of the original research database

    International Nuclear Information System (INIS)

    Morita, Kyoko

    1991-01-01

    Recently, library staffs arranged and compiled the original research papers that have been written by researchers for 33 years since National Institute of Radiological Sciences (NIRS) established. This papers describes how the internal database of original research papers has been created. This is a small sample of hand-made database. This has been cumulating by staffs who have any knowledge about computer machine or computer programming. (author)

  14. FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome.

    Science.gov (United States)

    Sherman, Stephanie L; Kidd, Sharon A; Riley, Catharine; Berry-Kravis, Elizabeth; Andrews, Howard F; Miller, Robert M; Lincoln, Sharyn; Swanson, Mark; Kaufmann, Walter E; Brown, W Ted

    2017-06-01

    Advances in the care of patients with fragile X syndrome (FXS) have been hampered by lack of data. This deficiency has produced fragmentary knowledge regarding the natural history of this condition, healthcare needs, and the effects of the disease on caregivers. To remedy this deficiency, the Fragile X Clinic and Research Consortium was established to facilitate research. Through a collective effort, the Fragile X Clinic and Research Consortium developed the Fragile X Online Registry With Accessible Research Database (FORWARD) to facilitate multisite data collection. This report describes FORWARD and the way it can be used to improve health and quality of life of FXS patients and their relatives and caregivers. FORWARD collects demographic information on individuals with FXS and their family members (affected and unaffected) through a 1-time registry form. The longitudinal database collects clinician- and parent-reported data on individuals diagnosed with FXS, focused on those who are 0 to 24 years of age, although individuals of any age can participate. The registry includes >2300 registrants (data collected September 7, 2009 to August 31, 2014). The longitudinal database includes data on 713 individuals diagnosed with FXS (data collected September 7, 2012 to August 31, 2014). Longitudinal data continue to be collected on enrolled patients along with baseline data on new patients. FORWARD represents the largest resource of clinical and demographic data for the FXS population in the United States. These data can be used to advance our understanding of FXS: the impact of cooccurring conditions, the impact on the day-to-day lives of individuals living with FXS and their families, and short-term and long-term outcomes. Copyright © 2017 by the American Academy of Pediatrics.

  15. Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database

    DEFF Research Database (Denmark)

    Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri

    2018-01-01

    estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n=200) and the Melanoma Database (n=200) during 2004-2014, using the Danish Pathology Registry as 'gold-standard' reference. We further validated tumor characteristics...

  16. Native Health Research Database

    Science.gov (United States)

    ... Indian Health Board) Welcome to the Native Health Database. Please enter your search terms. Basic Search Advanced ... To learn more about searching the Native Health Database, click here. Tutorial Video The NHD has made ...

  17. [The user´s reporting from the national registry of catheter aortic valve implantations (Czech TAVI Registry): the possibilities of the analytical reports based on the database system TrialDB2].

    Science.gov (United States)

    Bláha, Milan; Kala, Petr; Klimeš, Daniel; Bernat, Ivo; Branny, Marian; Cervinka, Pavel; Horák, Jan; Kočka, Viktor; Mates, Martin; Němec, Petr; Pešl, Ladislav; Stípal, Roman; Sťásek, Josef; Zelízko, Michael

    2014-10-01

    Assessment of the treatment procedures and their results is increasingly important in current medicine. The emphasis is put on an effective use of the health technologies (HTA). Unlike randomised studies, which involve strictly selected groups of patients who meet inclusion and exclusion criterias, the multicentre clinical registries provide a real-life picture of the treatment safety and effectiveness. Well prepared registries involve both research database and a friendly user interface enabling collection of parametric and easily analyzable data. Although there are some technological aspects aiming to ensure a maximum quality of entered data, cooperation with the users and data managers is essential. Such a registry, otherwise meaningful, must provide answers to previously defined medical hypotheses. Regular feedback to users (so called benchmarking or reporting) is considered to be of key importance. The Czech TAVI Registry (CTR) is a good example of reaching all of the above defined criterias. This registry contains data of approximately 95 % of all transcatheter aortic valve implantations (TAVI) performed in the Czech Republic. It is based on a general system aimed at the design of clinical trials, namely the TrialDB2 (a database system for clinical registries developed by the Institute of Biostatistics and Analyses at the Masaryk University (IBA MU). CTR has been run as an English-language version under the auspices of the Czech Society of Cardiology and represents one of the top-quality registries maintained by IBA MU. This paper presents the currently available database systems and some reports from this particular registry.

  18. DANBIO-powerful research database and electronic patient record

    DEFF Research Database (Denmark)

    Hetland, Merete Lund

    2011-01-01

    an overview of the research outcome and presents the cohorts of RA patients. The registry, which is approved as a national quality registry, includes patients with RA, PsA and AS, who are followed longitudinally. Data are captured electronically from the source (patients and health personnel). The IT platform...... as an electronic patient 'chronicle' in routine care, and at the same time provides a powerful research database....

  19. The relational clinical database: a possible solution to the star wars in registry systems.

    Science.gov (United States)

    Michels, D K; Zamieroski, M

    1990-12-01

    In summary, having data from other service areas available in a relational clinical database could resolve many of the problems existing in today's registry systems. Uniting sophisticated information systems into a centralized database system could definitely be a corporate asset in managing the bottom line.

  20. Cohort Profile : The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry)

    NARCIS (Netherlands)

    Gatz, Margaret; Harris, Jennifer R.; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L.; Snieder, Harold; Spiro, Avron; Butler, David A.

    The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved

  1. Radiation safety research information database

    International Nuclear Information System (INIS)

    Yukawa, Masae; Miyamoto, Kiriko; Takeda, Hiroshi; Kuroda, Noriko; Yamamoto, Kazuhiko

    2004-01-01

    National Institute of Radiological Sciences in Japan began to construct Radiation Safety Research Information Database' in 2001. The research information database is of great service to evaluate the effects of radiation on people by estimating exposure dose by determining radiation and radioactive matters in the environment. The above database (DB) consists of seven DB such as Nirs Air Borne Dust Survey DB, Nirs Environmental Tritium Survey DB, Nirs Environmental Carbon Survey DB, Environmental Radiation Levels, Abe, Metabolic Database for Assessment of Internal Dose, Graphs of Predicted Monitoring Data, and Nirs nuclear installation environment water tritium survey DB. Outline of DB and each DB are explained. (S.Y.)

  2. Clinical Databases and Registries in Congenital and Pediatric Cardiac Surgery, Cardiology, Critical Care, and Anesthesiology Worldwide.

    Science.gov (United States)

    Vener, David F; Gaies, Michael; Jacobs, Jeffrey P; Pasquali, Sara K

    2017-01-01

    The growth in large-scale data management capabilities and the successful care of patients with congenital heart defects have coincidentally paralleled each other for the last three decades, and participation in multicenter congenital heart disease databases and registries is now a fundamental component of cardiac care. This manuscript attempts for the first time to consolidate in one location all of the relevant databases worldwide, including target populations, specialties, Web sites, and participation information. Since at least 1,992 cardiac surgeons and cardiologists began leveraging this burgeoning technology to create multi-institutional data collections addressing a variety of specialties within this field. Pediatric heart diseases are particularly well suited to this methodology because each individual care location has access to only a relatively limited number of diagnoses and procedures in any given calendar year. Combining multiple institutions data therefore allows for a far more accurate contemporaneous assessment of treatment modalities and adverse outcomes. Additionally, the data can be used to develop outcome benchmarks by which individual institutions can measure their progress against the field as a whole and focus quality improvement efforts in a more directed fashion, and there is increasing utilization combining clinical research efforts within existing data structures. Efforts are ongoing to support better collaboration and integration across data sets, to improve efficiency, further the utility of the data collection infrastructure and information collected, and to enhance return on investment for participating institutions.

  3. Database searches for qualitative research

    OpenAIRE

    Evans, David

    2002-01-01

    Interest in the role of qualitative research in evidence-based health care is growing. However, the methods currently used to identify quantitative research do not translate easily to qualitative research. This paper highlights some of the difficulties during searches of electronic databases for qualitative research. These difficulties relate to the descriptive nature of the titles used in some qualitative studies, the variable information provided in abstracts, and the differences in the ind...

  4. Patient registries: useful tools for clinical research in myasthenia gravis.

    Science.gov (United States)

    Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

    2012-12-01

    Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

  5. Validation of the "United Registries for Clinical Assessment and Research" (UR-CARE), a European online registry for clinical care and research in Inflammatory Bowel Disease

    DEFF Research Database (Denmark)

    Burisch, Johan; Gisbert, Javier P; Siegmund, Britta

    2018-01-01

    Background: The "United Registries for Clinical Assessment and Research" (UR-CARE) database is an initiative of the European Crohn's and Colitis Organisation (ECCO) to facilitate daily patient care and research studies in inflammatory bowel disease (IBD). Herein, we sought to validate the database......-99%); Case 5: 91% (87-93%)]. These numbers did not differ significantly from those found 6 weeks later (NcNemar's test p>0.05). Conclusion: The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR......-CARE has the potential to enhance future European collaborations regarding clinical research in IBD....

  6. The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

    Science.gov (United States)

    Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

    2018-04-01

     Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

  7. The Research on Medical Education Outcomes (ROMEO) Registry: Addressing Ethical and Practical Challenges of Using "Bigger," Longitudinal Educational Data.

    Science.gov (United States)

    Gillespie, Colleen; Zabar, Sondra; Altshuler, Lisa; Fox, Jaclyn; Pusic, Martin; Xu, Junchuan; Kalet, Adina

    2016-05-01

    Efforts to evaluate and optimize the effectiveness of medical education have been limited by the difficulty of designing medical education research. Longitudinal, epidemiological views of educational outcomes can help overcome limitations, but these approaches require "bigger data"-more learners, sources, and time points. The rich data institutions collect on students and residents can be mined, however, ethical and practical barriers to using these data must first be overcome. In 2008, the authors established the Research on Medical Education Outcomes (ROMEO) Registry, an educational data registry modeled after patient registries. New York University School of Medicine students, residents, and fellows provide consent for routinely collected educational, performance, quality improvement, and clinical practice data to be compiled into a deidentified, longitudinal database. As of January 2015, this registry included 1,225 residents and fellows across 12 programs (71% consent rate) and 841 medical students (86% consent rate). Procedures ensuring voluntary informed consent are essential to ethical enrollment and data use. Substantial resources are required to provide access to and manage the data. The registry supports educational scholarship. Seventy-two studies using registry data have been presented or published. These focus on evaluating the curriculum, quality of care, and measurement quality and on assessing needs, competencies, skills development, transfer of skills to practice, remediation patterns, and links between education and patient outcomes. The authors are working to integrate assessment of relevant outcomes into the curriculum, maximize both the quantity and quality of the data, and expand the registry across institutions.

  8. Using the IR as a Research Data Registry

    KAUST Repository

    Grenz, Daryl M.

    2018-05-01

    As data and software become increasingly common research outputs, universities have an opportunity to expand their existing efforts to record affiliated publications so that they also capture information about research data releases. At KAUST we have taken several steps to put our repository on a path towards becoming a reliable registry for information about the existence and location of research data released by affiliated researchers. These included developing a process to retrospectively retrieve and register information about datasets with machine-readable relationships to publications already in the repository, and updates to our active publications tracking procedures so that data availability statements are retrieved at the time of harvesting and checked for references to research data. The presentation will conclude by discussing how these efforts help put the repository in a position to provide expanded services in support of improved research data management, including access to and preservation of research data not explicitly linked to a formal publication.

  9. The First 500 Registrations to the Research Registry®: Advancing Registration of Under-registered Study Types

    Directory of Open Access Journals (Sweden)

    Riaz Agha

    2016-09-01

    Full Text Available The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry®.Since the launch of Research Registry® in February 2015, data of registrations have been collected, including type of studies registered, country of origin and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Bradford-Hill’s criteria on what research studies should convey. Changes in quality scores over time were assessed. 500 studies were registered on Research Registry® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%, case series (14.8% and first-in-man case reports (10.4%. Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 (p < 0.0001.Since its conception in February 2015, Research Registry® has established itself as a new registry that is free, easy to use and enables the

  10. The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types.

    Science.gov (United States)

    Agha, Riaz; Fowler, Alexander J; Limb, Christopher; Al Omran, Yasser; Sagoo, Harkiran; Koshy, Kiron; Jafree, Daniyal J; Anwar, Mohammed Omer; McCullogh, Peter; Orgill, Dennis Paul

    2016-01-01

    The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry ® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry ® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry ® . Since the launch of Research Registry ® in February 2015, data of registrations have been collected, including type of studies registered, country of origin, and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Sir Austin Bradford Hill's criteria on what research studies should convey. Changes in quality scores over time were assessed. A total of 500 studies were registered on Research Registry ® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%), case series (14.8%), and first-in-man case reports (10.4%). Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 ( p  < 0.0001). Since its conception in February 2015, Research Registry ® has established itself as a new registry that is free, easy to

  11. Linkage between the Danish National Health Service Prescription Database, the Danish Fetal Medicine Database, and other Danish registries as a tool for the study of drug safety in pregnancy

    Directory of Open Access Journals (Sweden)

    Pedersen LH

    2016-05-01

    Full Text Available Lars H Pedersen,1,2 Olav B Petersen,1,2 Mette Nørgaard,3 Charlotte Ekelund,4 Lars Pedersen,3 Ann Tabor,4 Henrik T Sørensen3 1Department of Clinical Medicine, Aarhus University, 2Department of Obstetrics and Gynecology, 3Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 4Department of Fetal Medicine, Rigshospitalet, Copenhagen, Denmark Abstract: A linked population-based database is being created in Denmark for research on drug safety during pregnancy. It combines information from the Danish National Health Service Prescription Database (with information on all prescriptions reimbursed in Denmark since 2004, the Danish Fetal Medicine Database, the Danish National Registry of Patients, and the Medical Birth Registry. The new linked database will provide validated information on malformations diagnosed both prenatally and postnatally. The cohort from 2008 to 2014 will comprise 589,000 pregnancies with information on 424,000 pregnancies resulting in live-born children, ~420,000 pregnancies undergoing prenatal ultrasound scans, 65,000 miscarriages, and 92,000 terminations. It will be updated yearly with information on ~80,000 pregnancies. The cohort will enable identification of drug exposures associated with severe malformations, not only based on malformations diagnosed after birth but also including those having led to termination of pregnancy or miscarriage. Such combined data will provide a unique source of information for research on the safety of medications used during pregnancy. Keywords: malformations, teratology, therapeutic drug monitoring, epidemiological methods, registries

  12. Validation of the 'United Registries for Clinical Assessment and Research' [UR-CARE], a European Online Registry for Clinical Care and Research in Inflammatory Bowel Disease.

    Science.gov (United States)

    Burisch, Johan; Gisbert, Javier P; Siegmund, Britta; Bettenworth, Dominik; Thomsen, Sandra Bohn; Cleynen, Isabelle; Cremer, Anneline; Ding, Nik John Sheng; Furfaro, Federica; Galanopoulos, Michail; Grunert, Philip Christian; Hanzel, Jurij; Ivanovski, Tamara Knezevic; Krustins, Eduards; Noor, Nurulamin; O'Morain, Neil; Rodríguez-Lago, Iago; Scharl, Michael; Tua, Julia; Uzzan, Mathieu; Ali Yassin, Nuha; Baert, Filip; Langholz, Ebbe

    2018-04-27

    The 'United Registries for Clinical Assessment and Research' [UR-CARE] database is an initiative of the European Crohn's and Colitis Organisation [ECCO] to facilitate daily patient care and research studies in inflammatory bowel disease [IBD]. Herein, we sought to validate the database by using fictional case histories of patients with IBD that were to be entered by observers of varying experience in IBD. Nineteen observers entered five patient case histories into the database. After 6 weeks, all observers entered the same case histories again. For each case history, 20 key variables were selected to calculate the accuracy for each observer. We assumed that the database was such that ≥ 90% of the entered data would be correct. The overall proportion of correctly entered data was calculated using a beta-binomial regression model to account for inter-observer variation and compared to the expected level of validity. Re-test reliability was assessed using McNemar's test. For all case histories, the overall proportion of correctly entered items and their confidence intervals included the target of 90% (Case 1: 92% [88-94%]; Case 2: 87% [83-91%]; Case 3: 93% [90-95%]; Case 4: 97% [94-99%]; Case 5: 91% [87-93%]). These numbers did not differ significantly from those found 6 weeks later [NcNemar's test p > 0.05]. The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR-CARE has the potential to enhance future European collaborations regarding clinical research in IBD.

  13. Prospects for research in haemophilia with real-world data-An analysis of German registry and secondary data.

    Science.gov (United States)

    Schopohl, D; Bidlingmaier, C; Herzig, D; Klamroth, R; Kurnik, K; Rublee, D; Schramm, W; Schwarzkopf, L; Berger, K

    2018-02-28

    Open questions in haemophilia, such as effectiveness of innovative therapies, clinical and patient-reported outcomes (PROs), epidemiology and cost, await answers. The aim was to identify data attributes required and investigate the availability, appropriateness and accessibility of real-world data (RWD) from German registries and secondary databases to answer the aforementioned questions. Systematic searches were conducted in BIOSIS, EMBASE and MEDLINE to identify non-commercial secondary healthcare databases and registries of patients with haemophilia (PWH). Inclusion of German patients, type of patients, data elements-stratified by use in epidemiology, safety, outcomes and health economics research-and accessibility were investigated by desk research. Screening of 676 hits, identification of four registries [national PWH (DHR), national/international paediatric (GEPARD, PEDNET), international safety monitoring (EUHASS)] and seven national secondary databases. Access was limited to participants in three registries and to employees in one secondary database. One registry asks for PROs. Limitations of secondary databases originate from the ICD-coding system (missing: severity of haemophilia, presence of inhibitory antibodies), data protection laws and need to monitor reliability. Rigorous observational analysis of German haemophilia RWD shows that there is potential to supplement current knowledge and begin to address selected policy goals. To improve the value of existing RWD, the following efforts are proposed: ethical, legal and methodological discussions on data linkage across different sources, formulation of transparent governance rules for data access, redefinition of the ICD-coding, standardized collection of outcome data and implementation of incentives for treatment centres to improve data collection. © 2018 John Wiley & Sons Ltd.

  14. Incidence of Appendicitis over Time: A Comparative Analysis of an Administrative Healthcare Database and a Pathology-Proven Appendicitis Registry

    Science.gov (United States)

    Clement, Fiona; Zimmer, Scott; Dixon, Elijah; Ball, Chad G.; Heitman, Steven J.; Swain, Mark; Ghosh, Subrata

    2016-01-01

    Importance At the turn of the 21st century, studies evaluating the change in incidence of appendicitis over time have reported inconsistent findings. Objectives We compared the differences in the incidence of appendicitis derived from a pathology registry versus an administrative database in order to validate coding in administrative databases and establish temporal trends in the incidence of appendicitis. Design We conducted a population-based comparative cohort study to identify all individuals with appendicitis from 2000 to2008. Setting & Participants Two population-based data sources were used to identify cases of appendicitis: 1) a pathology registry (n = 8,822); and 2) a hospital discharge abstract database (n = 10,453). Intervention & Main Outcome The administrative database was compared to the pathology registry for the following a priori analyses: 1) to calculate the positive predictive value (PPV) of administrative codes; 2) to compare the annual incidence of appendicitis; and 3) to assess differences in temporal trends. Temporal trends were assessed using a generalized linear model that assumed a Poisson distribution and reported as an annual percent change (APC) with 95% confidence intervals (CI). Analyses were stratified by perforated and non-perforated appendicitis. Results The administrative database (PPV = 83.0%) overestimated the incidence of appendicitis (100.3 per 100,000) when compared to the pathology registry (84.2 per 100,000). Codes for perforated appendicitis were not reliable (PPV = 52.4%) leading to overestimation in the incidence of perforated appendicitis in the administrative database (34.8 per 100,000) as compared to the pathology registry (19.4 per 100,000). The incidence of appendicitis significantly increased over time in both the administrative database (APC = 2.1%; 95% CI: 1.3, 2.8) and pathology registry (APC = 4.1; 95% CI: 3.1, 5.0). Conclusion & Relevance The administrative database overestimated the incidence of appendicitis

  15. Database on veterinary clinical research in homeopathy.

    Science.gov (United States)

    Clausen, Jürgen; Albrecht, Henning

    2010-07-01

    The aim of the present report is to provide an overview of the first database on clinical research in veterinary homeopathy. Detailed searches in the database 'Veterinary Clinical Research-Database in Homeopathy' (http://www.carstens-stiftung.de/clinresvet/index.php). The database contains about 200 entries of randomised clinical trials, non-randomised clinical trials, observational studies, drug provings, case reports and case series. Twenty-two clinical fields are covered and eight different groups of species are included. The database is free of charge and open to all interested veterinarians and researchers. The database enables researchers and veterinarians, sceptics and supporters to get a quick overview of the status of veterinary clinical research in homeopathy and alleviates the preparation of systematical reviews or may stimulate reproductions or even new studies. 2010 Elsevier Ltd. All rights reserved.

  16. Correlates of Access to Business Research Databases

    Science.gov (United States)

    Gottfried, John C.

    2010-01-01

    This study examines potential correlates of business research database access through academic libraries serving top business programs in the United States. Results indicate that greater access to research databases is related to enrollment in graduate business programs, but not to overall enrollment or status as a public or private institution.…

  17. Database Support for Research in Public Administration

    Science.gov (United States)

    Tucker, James Cory

    2005-01-01

    This study examines the extent to which databases support student and faculty research in the area of public administration. A list of journals in public administration, public policy, political science, public budgeting and finance, and other related areas was compared to the journal content list of six business databases. These databases…

  18. Clinical Case Registries (CCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

  19. National Cancer Patient Registry--a patient registry/clinical database to evaluate the health outcomes of patients undergoing treatment for cancers in Malaysia.

    Science.gov (United States)

    Lim, G C C; Azura, D

    2008-09-01

    Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients.

  20. Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research.

    Science.gov (United States)

    Rider, Lisa G; Dankó, Katalin; Miller, Frederick W

    2014-11-01

    Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers' collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here, we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.

  1. Guide to Research Databases at IDRC

    International Development Research Centre (IDRC) Digital Library (Canada)

    Mélanie Brunet

    sponsibility of each user to ensure that he or she uses ... a collection of documents and research outputs generated as part of projects ... Although the commercial databases also have a French or Spanish interface, the content is mainly in En-.

  2. National Database for Autism Research (NDAR)

    Data.gov (United States)

    U.S. Department of Health & Human Services — National Database for Autism Research (NDAR) is an extensible, scalable informatics platform for austism spectrum disorder-relevant data at all levels of biological...

  3. Using Large Diabetes Databases for Research.

    Science.gov (United States)

    Wild, Sarah; Fischbacher, Colin; McKnight, John

    2016-09-01

    There are an increasing number of clinical, administrative and trial databases that can be used for research. These are particularly valuable if there are opportunities for linkage to other databases. This paper describes examples of the use of large diabetes databases for research. It reviews the advantages and disadvantages of using large diabetes databases for research and suggests solutions for some challenges. Large, high-quality databases offer potential sources of information for research at relatively low cost. Fundamental issues for using databases for research are the completeness of capture of cases within the population and time period of interest and accuracy of the diagnosis of diabetes and outcomes of interest. The extent to which people included in the database are representative should be considered if the database is not population based and there is the intention to extrapolate findings to the wider diabetes population. Information on key variables such as date of diagnosis or duration of diabetes may not be available at all, may be inaccurate or may contain a large amount of missing data. Information on key confounding factors is rarely available for the nondiabetic or general population limiting comparisons with the population of people with diabetes. However comparisons that allow for differences in distribution of important demographic factors may be feasible using data for the whole population or a matched cohort study design. In summary, diabetes databases can be used to address important research questions. Understanding the strengths and limitations of this approach is crucial to interpret the findings appropriately. © 2016 Diabetes Technology Society.

  4. Research reactor records in the INIS database

    International Nuclear Information System (INIS)

    Marinkovic, N.

    2001-01-01

    This report presents a statistical analysis of more than 13,000 records of publications concerned with research and technology in the field of research and experimental reactors which are included in the INIS Bibliographic Database for the period from 1970 to 2001. The main objectives of this bibliometric study were: to make an inventory of research reactor related records in the INIS Database; to provide statistics and scientific indicators for the INIS users, namely science managers, researchers, engineers, operators, scientific editors and publishers, decision-makers in the field of research reactors related subjects; to extract other useful information from the INIS Bibliographic Database about articles published in research reactors research and technology. (author)

  5. Measurement of the Inter-Rater Reliability Rate Is Mandatory for Improving the Quality of a Medical Database: Experience with the Paulista Lung Cancer Registry.

    Science.gov (United States)

    Lauricella, Leticia L; Costa, Priscila B; Salati, Michele; Pego-Fernandes, Paulo M; Terra, Ricardo M

    2018-06-01

    Database quality measurement should be considered a mandatory step to ensure an adequate level of confidence in data used for research and quality improvement. Several metrics have been described in the literature, but no standardized approach has been established. We aimed to describe a methodological approach applied to measure the quality and inter-rater reliability of a regional multicentric thoracic surgical database (Paulista Lung Cancer Registry). Data from the first 3 years of the Paulista Lung Cancer Registry underwent an audit process with 3 metrics: completeness, consistency, and inter-rater reliability. The first 2 methods were applied to the whole data set, and the last method was calculated using 100 cases randomized for direct auditing. Inter-rater reliability was evaluated using percentage of agreement between the data collector and auditor and through calculation of Cohen's κ and intraclass correlation. The overall completeness per section ranged from 0.88 to 1.00, and the overall consistency was 0.96. Inter-rater reliability showed many variables with high disagreement (>10%). For numerical variables, intraclass correlation was a better metric than inter-rater reliability. Cohen's κ showed that most variables had moderate to substantial agreement. The methodological approach applied to the Paulista Lung Cancer Registry showed that completeness and consistency metrics did not sufficiently reflect the real quality status of a database. The inter-rater reliability associated with κ and intraclass correlation was a better quality metric than completeness and consistency metrics because it could determine the reliability of specific variables used in research or benchmark reports. This report can be a paradigm for future studies of data quality measurement. Copyright © 2018 American College of Surgeons. Published by Elsevier Inc. All rights reserved.

  6. The Cerebral Palsy Research Registry: Development and Progress Toward National Collaboration in the United States

    Science.gov (United States)

    Hurley, Donna S.; Sukal-Moulton, Theresa; Msall, Michael E.; Gaebler-Spira, Deborah; Krosschell, Kristin J.; Dewald, Julius P.

    2011-01-01

    Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad. PMID:21677201

  7. The International Deep Brain Stimulation Registry and Database for Gilles de la Tourette Syndrome: How Does it Work?

    Directory of Open Access Journals (Sweden)

    Wissam eDeeb

    2016-04-01

    Full Text Available Tourette Syndrome (TS is a neuropsychiatric disease characterized by a combination of motor and vocal tics. Deep brain stimulation (DBS, already widely utilized for Parkinson’s disease and other movement disorders, is an emerging therapy for select and severe cases of TS that are resistant to medication and behavioral therapy. Over the last two decades, DBS has been used experimentally to manage severe TS cases. The results of case reports and small case series have been variable but in general positive. The reported interventions have, however, been variable, and there remain non-standardized selection criteria, various brain targets, differences in hardware, as well as variability in the programming parameters utilized. DBS centers perform only a handful of TS DBS cases each year, making large-scale outcomes difficult to study and to interpret. These limitations, coupled with the variable effect of surgery, and the overall small numbers of TS patients with implanted DBS worldwide, have delayed regulatory agency approval (e.g. FDA and equivalent agencies around the world. The Tourette Association of America, in response to the worldwide need for a more organized and collaborative effort, launched an international TS DBS registry and database. The main goal of the project has been to share data, uncover best practices, improve outcomes, and to provide critical information to regulatory agencies. The international registry and database has improved the communication and collaboration among TS DBS centers worldwide. In this paper we will review some of the key operation details for the international TS DBS database and registry.

  8. Ethical aspects of registry-based research in the Nordic countries.

    Science.gov (United States)

    Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

    2015-01-01

    National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

  9. [The significance of introducing registry study in the post-marketing safety research for Chinese medicine and pharmacy].

    Science.gov (United States)

    Liao, Xing; Xie, Yan-Ming; Yang, Wei; Chang, Yan-Peng

    2014-03-01

    There is a new research model named 'registry study/patient registry' in Western medicine, which could be referred to by Chinese medicine researchers, such as active safety surveillance. This article will introduce registry study from different aspects as the developing history, features, and application in order to inform Chinese medicine researchers of future studies.

  10. Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment.

    Science.gov (United States)

    Grill, Joshua D; Hoang, Dan; Gillen, Daniel L; Cox, Chelsea G; Gombosev, Adrijana; Klein, Kirsten; O'Leary, Steve; Witbracht, Megan; Pierce, Aimee

    2018-01-01

    Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.

  11. Describing the first 2000 registrations to the Research Registry®: A study protocol

    Directory of Open Access Journals (Sweden)

    Alexander J. Fowler

    Full Text Available Background: In 2013, the Declaration of Helsinki was updated and required the registration of all research studies involving human participants. Prior registries focussed on the registration of clinical trials and systematic reviews, and we estimate that only 10% of observational research is registered in a publically accessible registry. The Research Registry® was established to provide a venue of registration for any study, prospectively or retrospectively, involving human participants. This protocol describes the analysis for the first 2000 registrations received to the Research Registry®. Methods and analysis: Data for each registration to the Research Registry® (www.researchregistry.com, adapted from the World Health Organisation minimum data set, has been collected since the launch of the registry in 2015. A weekly curation process ensures that inappropriate registrations, such as duplicate studies or those not involving human participants, are removed from the registry. We will present the characteristics of the first 2000 registrations and how they have changed overtime. A quality score will be calculated for each registration by two independent teams, and inter-rater reliability will be calculated. Funding sources of work registered will also be presented. This process will also be performed for the systematic review portion of the registry (‘The Review Registry’, which will be considered separately. Ethics and dissemination: Ethical approval is not required for this study as it involves no human participants. The findings will be presented at international conferences and published in a peer reviewed journal.

  12. The utility of international shoulder joint replacement registries and databases: a comparative analytic review of two hundred and sixty one thousand, four hundred and eighty four cases.

    Science.gov (United States)

    Bayona, Carlos Eduardo Afanador; Somerson, Jeremy S; Matsen, Frederick A

    2018-02-01

    National registries are valuable tools for understanding the results of shoulder arthroplasty across populations. These databases provide an unselected view of shoulder joint replacement within geographical areas that cannot be obtained from case series or prospective studies. They can be particularly helpful in determining which diagnoses, patients, procedures, and prostheses have higher than expected rates of revision. In an attempt to determine the generalizability of registry data, we asked, 'how similar are the patients and procedures among the different national registries?' We analyzed national shoulder arthroplasty registries and databases accessed via Internet portals and through a PubMed literature search. Seven national/regional registries and five publications regarding national shoulder arthroplasty data were identified; these sources contained a combined total of 261,484 shoulder arthroplasty cases. The percentages of hemiarthroplasty, anatomic (aTSA) and reverse total shoulders (rTSA), the diagnoses leading to arthroplasty, the mean patient age, and the distribution of patient gender varied significantly among these different databases. This study indicates that the indications for and application of shoulder arthroplasty have important geographical variations and that these variations must be considered when comparing outcomes of shoulder arthroplasty from different locations. Without controlling for age, gender, diagnosis and procedure type, the results from one national registry may not be applicable to patients from a different location. In that national data provide the opportunity to reduce costs by identifying implants and procedures with higher failure rates, the funding of registries needs to be free of conflicts of interest.

  13. Biomedical databases: protecting privacy and promoting research.

    Science.gov (United States)

    Wylie, Jean E; Mineau, Geraldine P

    2003-03-01

    When combined with medical information, large electronic databases of information that identify individuals provide superlative resources for genetic, epidemiology and other biomedical research. Such research resources increasingly need to balance the protection of privacy and confidentiality with the promotion of research. Models that do not allow the use of such individual-identifying information constrain research; models that involve commercial interests raise concerns about what type of access is acceptable. Researchers, individuals representing the public interest and those developing regulatory guidelines must be involved in an ongoing dialogue to identify practical models.

  14. Risk factors for 30-day reoperation and 3-month readmission: analysis from the Quality and Outcomes Database lumbar spine registry.

    Science.gov (United States)

    Wadhwa, Rishi K; Ohya, Junichi; Vogel, Todd D; Carreon, Leah Y; Asher, Anthony L; Knightly, John J; Shaffrey, Christopher I; Glassman, Steven D; Mummaneni, Praveen V

    2017-08-01

    OBJECTIVE The aim of this paper was to use a prospective, longitudinal, multicenter outcome registry of patients undergoing surgery for lumbar degenerative disease in order to assess the incidence and factors associated with 30-day reoperation and 90-day readmission. METHODS Prospectively collected data from 9853 patients from the Quality and Outcomes Database (QOD; formerly known as the N 2 QOD [National Neurosurgery Quality and Outcomes Database]) lumbar spine registry were retrospectively analyzed. Multivariate binomial regression analysis was performed to identify factors associated with 30-day reoperation and 90-day readmission after surgery for lumbar degenerative disease. A subgroup analysis of Medicare patients stratified by age (readmission rate was 6.3%. Multivariate analysis demonstrated that higher ASA class (OR 1.46 per class, 95% CI 1.25-1.70) and history of depression (OR 1.27, 95% CI 1.04-1.54) were factors associated with 90-day readmission. Medicare beneficiaries had a higher rate of 90-day readmissions compared with those who had private insurance (OR 1.43, 95% CI 1.17-1.76). Medicare patients readmission included higher ASA class and a history of depression. The 90-day readmission rates were higher for Medicare beneficiaries than for those who had private insurance. Medicare patients < 65 years of age were more likely to undergo reoperation within 30 days and to be readmitted within 90 days after their index surgery.

  15. Informed consent and registry-based research - the case of the Danish circumcision registry

    DEFF Research Database (Denmark)

    Ploug, Thomas; Holm, Søren

    2017-01-01

    Background: Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of 'big data'. A central point of debate is whether...... the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences......) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research...

  16. Readmissions after stroke: linked data from the Australian Stroke Clinical Registry and hospital databases.

    Science.gov (United States)

    Kilkenny, Monique F; Dewey, Helen M; Sundararajan, Vijaya; Andrew, Nadine E; Lannin, Natasha; Anderson, Craig S; Donnan, Geoffrey A; Cadilhac, Dominique A

    2015-07-20

    To assess the feasibility of linking a national clinical stroke registry with hospital admissions and emergency department data; and to determine factors associated with hospital readmission after stroke or transient ischaemic attack (TIA) in Australia. Data from the Australian Stroke Clinical Registry (AuSCR) at a single Victorian hospital were linked to coded, routinely collected hospital datasets for admissions (Victorian Admitted Episodes Dataset) and emergency presentations (Victorian Emergency Minimum Dataset) in Victoria from 15 June 2009 to 31 December 2010, using stepwise deterministic data linkage techniques. Association of patient characteristics, social circumstances, processes of care and discharge outcomes with all-cause readmissions within 1 year from time of hospital discharge after an index admission for stroke or TIA. Of 788 patients registered in the AuSCR, 46% (359/781) were female, 83% (658/788) had a stroke, and the median age was 76 years. Data were successfully linked for 782 of these patients (99%). Within 1 year of their index stroke or TIA event, 42% of patients (291/685) were readmitted, with 12% (35/286) readmitted due to a stroke or TIA. Factors significantly associated with 1-year hospital readmission were two or more presentations to an emergency department before the index event (adjusted odds ratio [aOR], 1.57; 95% CI, 1.02-2.43), higher Charlson comorbidity index score (aOR, 1.19; 95% CI, 1.07-1.32) and diagnosis of TIA on the index admission (aOR, 2.15; 95% CI, 1.30-3.56). Linking clinical registry data with routinely collected hospital data for stroke and TIA is feasible in Victoria. Using these linked data, we found that readmission to hospital is common in this patient group and is related to their comorbid conditions.

  17. Design research of uranium mine borehole database

    International Nuclear Information System (INIS)

    Xie Huaming; Hu Guangdao; Zhu Xianglin; Chen Dehua; Chen Miaoshun

    2008-01-01

    With short supply of energy sources, exploration of uranium mine have been enhanced, but data storage, analysis and usage of exploration data of uranium mine are not highly computerized currently in China, the data is poor shared and used that it can not adapt the need of production and research. It will be well done, if the data are stored and managed in a database system. The concept structure design, logic structure design and data integrity checks are discussed according to the demand of applications and the analysis of exploration data of uranium mine. An application of the database is illustrated finally. (authors)

  18. Next-generation registries: fusion of data for care, and research.

    Science.gov (United States)

    Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D

    2013-01-01

    Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

  19. Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

    Science.gov (United States)

    Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B

    2014-01-01

    Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

  20. Finding and sharing : new approaches to registries of databases and services for the biomedical sciences

    NARCIS (Netherlands)

    Smedley, Damian; Schofield, Paul; Chen, Chao-Kung; Aidinis, Vassilis; Ainali, Chrysanthi; Bard, Jonathan; Balling, Rudi; Birney, Ewan; Blake, Andrew; Bongcam-Rudloff, Erik; Brookes, Anthony J.; Cesareni, Gianni; Chandras, Christina; Eppig, Janan; Flicek, Paul; Gkoutos, Georgios; Greenaway, Simon; Gruenberger, Michael; Heriche, Jean-Karim; Lyall, Andrew; Mallon, Ann-Marie; Muddyman, Dawn; Reisinger, Florian; Ringwald, Martin; Rosenthal, Nadia; Schughart, Klaus; Swertz, Morris; Thorisson, Gudmundur A.; Zouberakis, Michael; Hancock, John M.

    2010-01-01

    The recent explosion of biological data and the concomitant proliferation of distributed databases make it challenging for biologists and bioinformaticians to discover the best data resources for their needs, and the most efficient way to access and use them. Despite a rapid acceleration in uptake

  1. Ethical aspects of registry-based research in the Nordic countries

    Directory of Open Access Journals (Sweden)

    Ludvigsson JF

    2015-11-01

    Full Text Available Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and

  2. Using the IR as a Research Data Registry

    KAUST Repository

    Grenz, Daryl M.; Mastoraki, Eirini; Wang, Han; Baessa, Mohamed A.

    2018-01-01

    As data and software become increasingly common research outputs, universities have an opportunity to expand their existing efforts to record affiliated publications so that they also capture information about research data releases. At KAUST we

  3. Prognosis and management of myocardial infarction: Comparisons between the French FAST-MI 2010 registry and the French public health database.

    Science.gov (United States)

    Massoullié, Grégoire; Wintzer-Wehekind, Jérome; Chenaf, Chouki; Mulliez, Aurélien; Pereira, Bruno; Authier, Nicolas; Eschalier, Alain; Clerfond, Guillaume; Souteyrand, Géraud; Tabassome, Simon; Danchin, Nicolas; Citron, Bernard; Lusson, Jean-René; Puymirat, Étienne; Motreff, Pascal; Eschalier, Romain

    2016-05-01

    Multicentre registries of myocardial infarction management show a steady improvement in prognosis and greater access to myocardial revascularization in a more timely manner. While French registries are the standard references, the question arises: are data stemming solely from the activity of French cardiac intensive care units (ICUs) a true reflection of the entire French population with ST-segment elevation myocardial infarction (STEMI)? To compare data on patients hospitalized for STEMI from two French registries: the French registry of acute ST-elevation or non-ST-elevation myocardial infarction (FAST-MI) and the Échantillon généraliste des bénéficiaires (EGB) database. We compared patients treated for STEMI listed in the FAST-MI 2010 registry (n=1716) with those listed in the EGB database, which comprises a sample of 1/97th of the French population, also from 2010 (n=403). Compared with the FAST-MI 2010 registry, the EGB database population were older (67.2±15.3 vs 63.3±14.5 years; P<0.001), had a higher percentage of women (36.0% vs 24.7%; P<0.001), were less likely to undergo emergency coronary angiography (75.2% vs 96.3%; P<0.001) and were less often treated in university hospitals (27.1% vs 37.0%; P=0.001). There were no significant differences between the two registries in terms of cardiovascular risk factors, comorbidities and drug treatment at admission. Thirty-day mortality was higher in the EGB database (10.2% vs 4.4%; P<0.001). Registries such as FAST-MI are indispensable, not only for assessing epidemiological changes over time, but also for evaluating the prognostic effect of modern STEMI management. Meanwhile, exploitation of data from general databases, such as EGB, provides additional relevant information, as they include a broader population not routinely admitted to cardiac ICUs. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

  4. [The Murcia Twin Registry. A resource for research on health-related behaviour].

    Science.gov (United States)

    Ordoñana, Juan R; Sánchez Romera, Juan F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan J; Morosoli-García, José J; Pérez-Riquelme, Francisco; Martínez-Selva, José M

    Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies basically compare the degree of phenotypical similarity between monozygotic and dizygotic twin pairs. In addition to the traditional estimate of heritability, this kind of registry enables a wide variety of analyses which are unique due to the characteristics of the sample. The Murcia Twin Registry is population-based and focused on the analysis of health-related behaviour. The observed prevalence of health problems is comparable to that of other regional and national reference samples, which guarantees its representativeness. Overall, the characteristics of the Registry facilitate developing various types of research as well as genetically informative designs, and collaboration with different initiatives and consortia. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

  5. Security Research on Engineering Database System

    Institute of Scientific and Technical Information of China (English)

    2002-01-01

    Engine engineering database system is an oriented C AD applied database management system that has the capability managing distributed data. The paper discusses the security issue of the engine engineering database management system (EDBMS). Through studying and analyzing the database security, to draw a series of securi ty rules, which reach B1, level security standard. Which includes discretionary access control (DAC), mandatory access control (MAC) and audit. The EDBMS implem ents functions of DAC, ...

  6. #DDOD Use Case: Improve National Death Registry for use with outcomes research

    Data.gov (United States)

    U.S. Department of Health & Human Services — SUMMARY DDOD use case request to improve National Death Registry for use with outcomes research. WHAT IS A USE CASE? A “Use Case” is a request that was made by the...

  7. Features of TMR for a Successful Clinical and Research Database

    OpenAIRE

    Pryor, David B.; Stead, William W.; Hammond, W. Edward; Califf, Robert M.; Rosati, Robert A.

    1982-01-01

    A database can be used for clinical practice and for research. The design of the database is important if both uses are to succeed. A clinical database must be efficient and flexible. A research database requires consistent observations recorded in a format which permits complete recall of the experience. In addition, the database should be designed to distinguish between missing data and negative responses, and to minimize transcription errors during the recording process.

  8. Healthcare Databases in Thailand and Japan: Potential Sources for Health Technology Assessment Research.

    Directory of Open Access Journals (Sweden)

    Surasak Saokaew

    Full Text Available Health technology assessment (HTA has been continuously used for value-based healthcare decisions over the last decade. Healthcare databases represent an important source of information for HTA, which has seen a surge in use in Western countries. Although HTA agencies have been established in Asia-Pacific region, application and understanding of healthcare databases for HTA is rather limited. Thus, we reviewed existing databases to assess their potential for HTA in Thailand where HTA has been used officially and Japan where HTA is going to be officially introduced.Existing healthcare databases in Thailand and Japan were compiled and reviewed. Databases' characteristics e.g. name of database, host, scope/objective, time/sample size, design, data collection method, population/sample, and variables were described. Databases were assessed for its potential HTA use in terms of safety/efficacy/effectiveness, social/ethical, organization/professional, economic, and epidemiological domains. Request route for each database was also provided.Forty databases- 20 from Thailand and 20 from Japan-were included. These comprised of national censuses, surveys, registries, administrative data, and claimed databases. All databases were potentially used for epidemiological studies. In addition, data on mortality, morbidity, disability, adverse events, quality of life, service/technology utilization, length of stay, and economics were also found in some databases. However, access to patient-level data was limited since information about the databases was not available on public sources.Our findings have shown that existing databases provided valuable information for HTA research with limitation on accessibility. Mutual dialogue on healthcare database development and usage for HTA among Asia-Pacific region is needed.

  9. Healthcare Databases in Thailand and Japan: Potential Sources for Health Technology Assessment Research.

    Science.gov (United States)

    Saokaew, Surasak; Sugimoto, Takashi; Kamae, Isao; Pratoomsoot, Chayanin; Chaiyakunapruk, Nathorn

    2015-01-01

    Health technology assessment (HTA) has been continuously used for value-based healthcare decisions over the last decade. Healthcare databases represent an important source of information for HTA, which has seen a surge in use in Western countries. Although HTA agencies have been established in Asia-Pacific region, application and understanding of healthcare databases for HTA is rather limited. Thus, we reviewed existing databases to assess their potential for HTA in Thailand where HTA has been used officially and Japan where HTA is going to be officially introduced. Existing healthcare databases in Thailand and Japan were compiled and reviewed. Databases' characteristics e.g. name of database, host, scope/objective, time/sample size, design, data collection method, population/sample, and variables were described. Databases were assessed for its potential HTA use in terms of safety/efficacy/effectiveness, social/ethical, organization/professional, economic, and epidemiological domains. Request route for each database was also provided. Forty databases- 20 from Thailand and 20 from Japan-were included. These comprised of national censuses, surveys, registries, administrative data, and claimed databases. All databases were potentially used for epidemiological studies. In addition, data on mortality, morbidity, disability, adverse events, quality of life, service/technology utilization, length of stay, and economics were also found in some databases. However, access to patient-level data was limited since information about the databases was not available on public sources. Our findings have shown that existing databases provided valuable information for HTA research with limitation on accessibility. Mutual dialogue on healthcare database development and usage for HTA among Asia-Pacific region is needed.

  10. Design, development and deployment of a Diabetes Research Registry to facilitate recruitment in clinical research.

    Science.gov (United States)

    Tan, Meng H; Bernstein, Steven J; Gendler, Stephen; Hanauer, David; Herman, William H

    2016-03-01

    A major challenge in conducting clinical trials/studies is the timely recruitment of eligible subjects. Our aim is to develop a Diabetes Research Registry (DRR) to facilitate recruitment by matching potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their electronic health records (EHR). A committee with expertise in diabetes, quality improvement, information technology, and informatics designed and developed the DRR. Using a hybrid approach, we identified and consented patients interested in research, abstracted their EHRs to assess common eligibility criteria, and contacted them about their interest in participating in specific studies. Investigators submit their requests with study entry criteria to the DRR which then provides a list of potential subjects who may be directly contacted for their study. The DRR meets all local, regional and federal regulatory requirements. After 5 years, the DRR has over 5000 registrants. About 30% have type 1 diabetes and 70% have type 2 diabetes. There are almost equal proportions of men and women. During this period, 31 unique clinical studies from 19 unique investigators requested lists of potential subjects for their studies. Eleven grant applications from 10 unique investigators used aggregated counts of potentially eligible subjects in their applications. The DRR matches potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their EHR. By providing large lists of potentially eligible study subjects quickly, the DRR facilitated recruitment in 31 clinical studies. Copyright © 2016 Elsevier Inc. All rights reserved.

  11. The Danish Schizophrenia Registry

    DEFF Research Database (Denmark)

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea

    2016-01-01

    Aim of database: To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population: Patients diagnosed with schizophrenia and receiving mental health care...... to the data for use in specific research projects by applying to the steering committee. Conclusion: The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time...

  12. Developing the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a collaborative pan-stakeholder critical path registry model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

    Science.gov (United States)

    Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Kowey, Peter; Hammill, Stephen C; Ellenbogen, Kenneth A; Marinac-Dabic, Danica; Waldo, Albert L; Brindis, Ralph G; Wilbur, David J; Jackman, Warren M; Yaross, Marcia S; Russo, Andrea M; Prystowsky, Eric; Varosy, Paul D; Gross, Thomas; Pinnow, Ellen; Turakhia, Mintu P; Krucoff, Mitchell W

    2010-10-01

    Although several randomized clinical trials have demonstrated the safety and efficacy of catheter ablation of atrial fibrillation (AF) in experienced centers, the outcomes of this procedure in routine clinical practice and in patients with persistent and long-standing persistent AF remain uncertain. Brisk adoption of this therapy by physicians with diverse training and experience highlights potential concerns regarding the safety and effectiveness of this procedure. Some of these concerns could be addressed by a national registry of AF ablation procedures such as the Safety of Atrial Fibrillation Ablation Registry Initiative that was initially proposed at a Cardiac Safety Research Consortium Think Tank meeting in April 2009. In January 2010, the Cardiac Safety Research Consortium, in collaboration with the Duke Clinical Research Institute, the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, held a follow-up meeting of experts in the field to review the construct and progress to date. Other participants included the National Heart, Lung, and Blood Institute; the Centers for Medicare and Medicaid Services; the Agency for Healthcare Research and Quality; the AdvaMed AF working group; and additional industry representatives. This article summarizes the discussions that occurred at the meeting of the state of the Safety of Atrial Fibrillation Ablation Registry Initiative, the identification of a clear pathway for its implementation, and the exploration of solutions to potential issues in the execution of this registry. Copyright © 2010 Mosby, Inc. All rights reserved.

  13. A federated semantic metadata registry framework for enabling interoperability across clinical research and care domains.

    Science.gov (United States)

    Sinaci, A Anil; Laleci Erturkmen, Gokce B

    2013-10-01

    In order to enable secondary use of Electronic Health Records (EHRs) by bridging the interoperability gap between clinical care and research domains, in this paper, a unified methodology and the supporting framework is introduced which brings together the power of metadata registries (MDR) and semantic web technologies. We introduce a federated semantic metadata registry framework by extending the ISO/IEC 11179 standard, and enable integration of data element registries through Linked Open Data (LOD) principles where each Common Data Element (CDE) can be uniquely referenced, queried and processed to enable the syntactic and semantic interoperability. Each CDE and their components are maintained as LOD resources enabling semantic links with other CDEs, terminology systems and with implementation dependent content models; hence facilitating semantic search, much effective reuse and semantic interoperability across different application domains. There are several important efforts addressing the semantic interoperability in healthcare domain such as IHE DEX profile proposal, CDISC SHARE and CDISC2RDF. Our architecture complements these by providing a framework to interlink existing data element registries and repositories for multiplying their potential for semantic interoperability to a greater extent. Open source implementation of the federated semantic MDR framework presented in this paper is the core of the semantic interoperability layer of the SALUS project which enables the execution of the post marketing safety analysis studies on top of existing EHR systems. Copyright © 2013 Elsevier Inc. All rights reserved.

  14. Grantees Guide to Research Databases at IDRC

    International Development Research Centre (IDRC) Digital Library (Canada)

    . 7. 7. Creating search alerts. 9. 8. IDRC Digital Library (IDL). 11. 9. Key contacts. 12. Commercial databases conditions of use. These resources are governed by license agreements which restrict use to IDRC employees and grantees taking ...

  15. The Human Communication Research Centre dialogue database.

    Science.gov (United States)

    Anderson, A H; Garrod, S C; Clark, A; Boyle, E; Mullin, J

    1992-10-01

    The HCRC dialogue database consists of over 700 transcribed and coded dialogues from pairs of speakers aged from seven to fourteen. The speakers are recorded while tackling co-operative problem-solving tasks and the same pairs of speakers are recorded over two years tackling 10 different versions of our two tasks. In addition there are over 200 dialogues recorded between pairs of undergraduate speakers engaged on versions of the same tasks. Access to the database, and to its accompanying custom-built search software, is available electronically over the JANET system by contacting liz@psy.glasgow.ac.uk, from whom further information about the database and a user's guide to the database can be obtained.

  16. Research Directions in Database Security IV

    Science.gov (United States)

    1993-07-01

    second algorithm, which is based on multiversion timestamp ordering, is that high level transactions can be forced to read arbitrarily old data values...system. The first, the single ver- sion model, stores only the latest veision of each data item, while the second, the 88 multiversion model, stores... Multiversion Database Model In the standard database model, where there is only one version of each data item, all transactions compete for the most recent

  17. [Leather dust and systematic research on occupational tumors: the national and regional registry TUNS].

    Science.gov (United States)

    Mensi, Carolina; Sieno, Claudia; Consonni, Dario; Riboldi, Luciano

    2012-01-01

    The sinonasal cancer (SNC) are a rare tumors characterized by high occupational etiologic fraction. For this reason their incidence and etiology can be actively monitored by a dedicated cancer registry. The National Registry of these tumours is situated at the Italian Institute for Occupational Safety and Prevention (ISPESL) and is based on Regional Operating Centres (ROCs). In Lombardy Region the ROC has been established at the end of 2007 with the purpose to make a systematic surveillance and therefore to support in the most suitable way the scientific research and the prevention actions in the high risk working sectors. The aims of this surveillance are: to estimate the regional incidence of SNC, to define different sources of occupational and environmental exposure both known (wood, leather, nickel, chromium) and unknown. The registry collects all the new incident cases of epithelial SNC occurring in residents in Lombardy Region since 01.01.2008. The regional Registry is managed according to National Guidelines. Until January 2010 we received 596 cases of suspected SNC; only 91 (15%) of these were actually incident cases according to the inclusion criteria of the Registry, and they were preferentially adenocarcinoma and squamous carcinoma. In 2008 the regional age-standardized incidence rate of SNC for males and females, respectively, is 0.8 and 0.5 per 100,000. Occupational or environmental exposure to wood or leather dust is ascertained in over the 50% of cases. The occupational exposure to leather dust was duo to work in shoe factories. Our preliminary findings confirm that occupational exposure to wood and leather dusts are the more relevant risk factors for SNC. The study of occupational sectors and job activity in cases without such exposure could suggest new etiologic hypothesis.

  18. Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010–2012

    NARCIS (Netherlands)

    Siesling, Sabine; Louwman, W.J.; Kwast, A.; van den Hurk, C.J.G.; O'Callaghan, M.; Rosso, S.; Zanetti, R.; Storm, H.; Comber, H.; Steliarova-Foucher, E.; Coebergh, J.W.W.

    2015-01-01

    Aim To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the

  19. Making research data repositories visible: the re3data.org Registry.

    Science.gov (United States)

    Pampel, Heinz; Vierkant, Paul; Scholze, Frank; Bertelmann, Roland; Kindling, Maxi; Klump, Jens; Goebelbecker, Hans-Jürgen; Gundlach, Jens; Schirmbacher, Peter; Dierolf, Uwe

    2013-01-01

    Researchers require infrastructures that ensure a maximum of accessibility, stability and reliability to facilitate working with and sharing of research data. Such infrastructures are being increasingly summarized under the term Research Data Repositories (RDR). The project re3data.org-Registry of Research Data Repositories-has begun to index research data repositories in 2012 and offers researchers, funding organizations, libraries and publishers an overview of the heterogeneous research data repository landscape. In July 2013 re3data.org lists 400 research data repositories and counting. 288 of these are described in detail using the re3data.org vocabulary. Information icons help researchers to easily identify an adequate repository for the storage and reuse of their data. This article describes the heterogeneous RDR landscape and presents a typology of institutional, disciplinary, multidisciplinary and project-specific RDR. Further the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.

  20. Making research data repositories visible: the re3data.org Registry.

    Directory of Open Access Journals (Sweden)

    Heinz Pampel

    Full Text Available Researchers require infrastructures that ensure a maximum of accessibility, stability and reliability to facilitate working with and sharing of research data. Such infrastructures are being increasingly summarized under the term Research Data Repositories (RDR. The project re3data.org-Registry of Research Data Repositories-has begun to index research data repositories in 2012 and offers researchers, funding organizations, libraries and publishers an overview of the heterogeneous research data repository landscape. In July 2013 re3data.org lists 400 research data repositories and counting. 288 of these are described in detail using the re3data.org vocabulary. Information icons help researchers to easily identify an adequate repository for the storage and reuse of their data. This article describes the heterogeneous RDR landscape and presents a typology of institutional, disciplinary, multidisciplinary and project-specific RDR. Further the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data.

  1. DANBIO-powerful research database and electronic patient record

    DEFF Research Database (Denmark)

    Hetland, Merete Lund

    2011-01-01

    is based on open-source software. Via a unique personal identification code, linkage with various national registers is possible for research purposes. Since the year 2000, more than 10,000 patients have been included. The main focus of research has been on treatment efficacy and drug survival. Compared...... an overview of the research outcome and presents the cohorts of RA patients. The registry, which is approved as a national quality registry, includes patients with RA, PsA and AS, who are followed longitudinally. Data are captured electronically from the source (patients and health personnel). The IT platform...... with RA patients, who were on conventional treatment with DMARDs, the patients who started biological treatment were younger, had longer disease duration, higher disease activity, tried more DMARDs and received more prednisolone. Also, more patients on biological therapy were seropositive and had erosive...

  2. System factors influencing utilisation of Research4Life databases by ...

    African Journals Online (AJOL)

    This is a comprehensive investigation of the influence of system factors on utilisation of Research4Life databases. It is part of a doctoral dissertation. Research4Life databases are new innovative technologies being investigated in a new context – utilisation by NARIs scientists for research. The study adopted the descriptive ...

  3. Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

    Science.gov (United States)

    Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

    2017-11-01

    The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

  4. Privacy and Data-Based Research

    OpenAIRE

    Ori Heffetz; Katrina Ligett

    2013-01-01

    What can we, as users of microdata, formally guarantee to the individuals (or firms) in our dataset, regarding their privacy? We retell a few stories, well-known in data-privacy circles, of failed anonymization attempts in publicly released datasets. We then provide a mostly informal introduction to several ideas from the literature on differential privacy, an active literature in computer science that studies formal approaches to preserving the privacy of individuals in statistical databases...

  5. Research Directions in Database Security, II

    Science.gov (United States)

    1990-11-01

    5 Flexible Access Controls Bill Maimone of Oracle Corporation gave a presentation of Oracle’s new roles facility. The approach is apparently motivated ...See rule 5 for substitution of DAC mechanisms.) PS4 : Overclassification of data is to be avoided. PS5: Authorization to update data and create...of designing databases as op- posed to the abstract nature of operating system requirements. The primary motivation be- hind developing the Homework

  6. re3data.org - a global registry of research data repositories

    Science.gov (United States)

    Pampel, Heinz; Vierkant, Paul; Elger, Kirsten; Bertelmann, Roland; Witt, Michael; Schirmbacher, Peter; Rücknagel, Jessika; Kindling, Maxi; Scholze, Frank; Ulrich, Robert

    2016-04-01

    re3data.org - the registry of research data repositories lists over 1,400 research data repositories from all over the world making it the largest and most comprehensive online catalog of research data repositories on the web. The registry is a valuable tool for researchers, funding organizations, publishers and libraries. re3data.org provides detailed information about research data repositories, and its distinctive icons help researchers to easily identify relevant repositories for accessing and depositing data sets [1]. Funding agencies, like the European Commission [2] and research institutions like the University of Bielefeld [3] already recommend the use of re3data.org in their guidelines and policies. Several publishers and journals like Copernicus Publications, PeerJ, and Nature's Scientific Data recommend re3data.org in their editorial policies as a tool for the easy identification of appropriate data repositories to store research data. Project partners in re3data.org are the Library and Information Services department (LIS) of the GFZ German Research Centre for Geosciences, the Computer and Media Service at the Humboldt-Universität zu Berlin, the Purdue University Libraries and the KIT Library at the Karlsruhe Institute of Technology (KIT). After its fusion with the U.S. American DataBib in 2014, re3data.org continues as a service of DataCite from 2016 on. DataCite is the international organization for the registration of Digital Object Identifiers (DOI) for research data and aims to improve their citation. The poster describes the current status and the future plans of re3data.org. [1] Pampel H, et al. (2013) Making Research Data Repositories Visible: The re3data.org Registry. PLoS ONE 8(11): e78080. doi:10.1371/journal.pone.0078080. [2] European Commission (2015): Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020. Available: http://ec.europa.eu/research/participants/data/ref/h2020/grants_manual/hi/oa_pilot/h2020-hi

  7. Registry and health insurance claims data in vascular research and quality improvement.

    Science.gov (United States)

    Behrendt, Christian-Alexander; Heidemann, Franziska; Rieß, Henrik Christian; Stoberock, Konstanze; Debus, Sebastian Eike

    2017-01-01

    The expansion of procedures in multidisciplinary vascular medicine has sparked a controversy regarding measures of quality improvement. In addition to primary registries, the use of health insurance claims data is becoming of increasing importance. However, due to the fact that health insurance claims data are not collected for scientific evaluation but rather for reimbursement purposes, meticulous validation is necessary before and during usage in research and quality improvement matters. This review highlights the advantages and disadvantages of such data sources. A recent comprehensive expert opinion panel examined the use of health insurance claims data and other administrative data sources in medicine. Results from several studies concerning the validity of administrative data varied significantly. Validity of these data sources depends on the clinical relevance of the diagnoses considered. The rate of implausible information was 0.04 %, while the validity of the considered diagnoses varied between 80 and 97 % across multiple validation studies. A matching study between health insurance claims data of the third-largest German health insurance provider, DAK-Gesundheit, and a prospective primary registry of the German Society for Vascular Surgery demonstrated a good level of validity regarding the mortality of endovascular and open surgical treatment of abdominal aortic aneurysm in German hospitals. In addition, a large-scale international comparison of administrative data for the same disorder presented important results in treatment reality, which differed from those from earlier randomized controlled trials. The importance of administrative data for research and quality improvement will continue to increase in the future. When discussing the internal and external validity of this data source, one has to distinguish not only between its intended usage (research vs. quality improvement), but also between the included diseases and/or treatment procedures

  8. The Vocational Guidance Research Database: A Scientometric Approach

    Science.gov (United States)

    Flores-Buils, Raquel; Gil-Beltran, Jose Manuel; Caballer-Miedes, Antonio; Martinez-Martinez, Miguel Angel

    2012-01-01

    The scientometric study of scientific output through publications in specialized journals cannot be undertaken exclusively with the databases available today. For this reason, the objective of this article is to introduce the "Base de Datos de Investigacion en Orientacion Vocacional" [Vocational Guidance Research Database], based on the…

  9. The Western Denmark Cardiac Computed Tomography Registry

    DEFF Research Database (Denmark)

    Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik

    2014-01-01

    BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... examined the content, data quality, and research potential of the WDHR-CCTR. METHODS: We retrieved 2008-2012 data to examine the 1) content; 2) completeness of procedure registration using the Danish National Patient Registry as reference; 3) completeness of variable registration comparing observed vs...

  10. The NIH genetic testing registry: a new, centralized database of genetic tests to enable access to comprehensive information and improve transparency.

    Science.gov (United States)

    Rubinstein, Wendy S; Maglott, Donna R; Lee, Jennifer M; Kattman, Brandi L; Malheiro, Adriana J; Ovetsky, Michael; Hem, Vichet; Gorelenkov, Viatcheslav; Song, Guangfeng; Wallin, Craig; Husain, Nora; Chitipiralla, Shanmuga; Katz, Kenneth S; Hoffman, Douglas; Jang, Wonhee; Johnson, Mark; Karmanov, Fedor; Ukrainchik, Alexander; Denisenko, Mikhail; Fomous, Cathy; Hudson, Kathy; Ostell, James M

    2013-01-01

    The National Institutes of Health Genetic Testing Registry (GTR; available online at http://www.ncbi.nlm.nih.gov/gtr/) maintains comprehensive information about testing offered worldwide for disorders with a genetic basis. Information is voluntarily submitted by test providers. The database provides details of each test (e.g. its purpose, target populations, methods, what it measures, analytical validity, clinical validity, clinical utility, ordering information) and laboratory (e.g. location, contact information, certifications and licenses). Each test is assigned a stable identifier of the format GTR000000000, which is versioned when the submitter updates information. Data submitted by test providers are integrated with basic information maintained in National Center for Biotechnology Information's databases and presented on the web and through FTP (ftp.ncbi.nih.gov/pub/GTR/_README.html).

  11. Planning the Safety of Atrial Fibrillation Ablation Registry Initiative (SAFARI) as a Collaborative Pan-Stakeholder Critical Path Registry Model: a Cardiac Safety Research Consortium "Incubator" Think Tank.

    Science.gov (United States)

    Al-Khatib, Sana M; Calkins, Hugh; Eloff, Benjamin C; Packer, Douglas L; Ellenbogen, Kenneth A; Hammill, Stephen C; Natale, Andrea; Page, Richard L; Prystowsky, Eric; Jackman, Warren M; Stevenson, William G; Waldo, Albert L; Wilber, David; Kowey, Peter; Yaross, Marcia S; Mark, Daniel B; Reiffel, James; Finkle, John K; Marinac-Dabic, Danica; Pinnow, Ellen; Sager, Phillip; Sedrakyan, Art; Canos, Daniel; Gross, Thomas; Berliner, Elise; Krucoff, Mitchell W

    2010-01-01

    Atrial fibrillation (AF) is a major public health problem in the United States that is associated with increased mortality and morbidity. Of the therapeutic modalities available to treat AF, the use of percutaneous catheter ablation of AF is expanding rapidly. Randomized clinical trials examining the efficacy and safety of AF ablation are currently underway; however, such trials can only partially determine the safety and durability of the effect of the procedure in routine clinical practice, in more complex patients, and over a broader range of techniques and operator experience. These limitations of randomized trials of AF ablation, particularly with regard to safety issues, could be addressed using a synergistically structured national registry, which is the intention of the SAFARI. To facilitate discussions about objectives, challenges, and steps for such a registry, the Cardiac Safety Research Consortium and the Duke Clinical Research Institute, Durham, NC, in collaboration with the US Food and Drug Administration, the American College of Cardiology, and the Heart Rhythm Society, organized a Think Tank meeting of experts in the field. Other participants included the National Heart, Lung and Blood Institute, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, the Society of Thoracic Surgeons, the AdvaMed AF working group, and additional industry representatives. The meeting took place on April 27 to 28, 2009, at the US Food and Drug Administration headquarters in Silver Spring, MD. This article summarizes the issues and directions presented and discussed at the meeting. Copyright 2010 Mosby, Inc. All rights reserved.

  12. Clinical trial registries: a practical guide for sponsors and researchers of medicinal products

    National Research Council Canada - National Science Library

    Foote, MaryAnn

    2006-01-01

    ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix MaryAnn Foote Clinical trial registries and publication of results - a primer . . . . . . . . . . . . . . . . . . 1 Ana Marušić and Charlotte Haug The journal...

  13. A Philosophy Research Database to Share Data Resources

    Directory of Open Access Journals (Sweden)

    Jili Cheng

    2007-12-01

    Full Text Available Philosophy research used to rely mainly on the traditional published journals and newspapers for collecting or communicating data. However, because of financial limits or lack of capability to collect data, required published materials and even restricted materials and developing information from research projects often could not be obtained. The rise of digital techniques and Internet opportunities has allowed data resource sharing of philosophy research. However, although there are several ICPs with large-scale comprehensive commercial databases in the field in China, no real non-profit professional database for philosophy researchers exists. Therefore, in 2002, the Philosophy Institute of the Chinese Academy of Social Sciences began a project to build "The Database of Philosophy Research." Until Mar. 2006 the number of subsets had reached 30, with more than 30,000 records, retrieval services reached 6,000, and article-reading reached 30,000. Because of the concept of intellectual property, the service of the database is currently limited to the information held in CASS. Nevertheless, this is the first academic database for philosophy research, so its orientation is towards resource-sharing, leading users to data, and serving large number of demands from other provinces and departments.

  14. Fedora Content Modelling for Improved Services for Research Databases

    DEFF Research Database (Denmark)

    Elbæk, Mikael Karstensen; Heller, Alfred; Pedersen, Gert Schmeltz

    A re-implementation of the research database of the Technical University of Denmark, DTU, is based on Fedora. The backbone consists of content models for primary and secondary entities and their relationships, giving flexible and powerful extraction capabilities for interoperability and reporting....... By adopting such an abstract data model, the platform enables new and improved services for researchers, librarians and administrators....

  15. [Trauma registry and injury].

    Science.gov (United States)

    Shapira, S C

    2001-10-01

    The trauma registry network constitutes an essential database in every injury prevention system. In order to rationally estimate the extent of injury in general, and injuries from traffic accidents in particular, the trauma registry systems should contain the most comprehensive and broad database possible, in line with the operational definitions. Ideally, the base of the injury pyramid should also include mild injuries and even "near-misses". The Israeli National Trauma Registry has come a long way in the last few years. The eventual inclusion of all trauma centers in Israel will enable the establishment of a firm base for the allocation of resources by decision-makers.

  16. Medication use in juvenile uveitis patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry.

    Science.gov (United States)

    Henderson, Lauren A; Zurakowski, David; Angeles-Han, Sheila T; Lasky, Andrew; Rabinovich, C Egla; Lo, Mindy S

    2016-02-16

    There is not yet a commonly accepted, standardized approach in the treatment of juvenile idiopathic uveitis when initial steroid therapy is insufficient. We sought to assess current practice patterns within a large cohort of children with juvenile uveitis. This is a cross-sectional cohort study of patients with uveitis enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRAnet) registry. Clinical information including, demographic information, presenting features, disease complications, and medications were collected. Chi-square and Fisher's exact tests were used to assess for associations between medications and clinical characteristics. Ninety-two children with idiopathic and 656 with juvenile idiopathic arthritis (JIA)-associated uveitis were identified. Indication (arthritis or uveitis) for medication use was not available for JIA patients; therefore, detailed analysis was limited to children with idiopathic uveitis. In this group, 94 % had received systemic steroids. Methotrexate (MTX) was used in 76 % of patients, with oral and subcutaneous forms given at similar rates. In multivariable analysis, non-Caucasians were more likely to be treated initially with subcutaneous MTX (P = 0.003). Of the 53 % of patients treated with a biologic DMARD, all received a tumor necrosis factor (TNF) inhibitor. TNF inhibitor use was associated with a higher frequency of cataracts (52 % vs 21 %; P = 0.001) and antinuclear antibody positivity (49 % vs 29 %; P = 0.04), although overall complication rates were not higher in these patients. Among idiopathic uveitis patients enrolled in the CARRAnet registry, MTX was the most commonly used DMARD, with subcutaneous and oral forms equally favored. Patients who received a TNF inhibitor were more likely to be ANA positive and have cataracts.

  17. Atlantic Canada's energy research and development website and database

    International Nuclear Information System (INIS)

    2005-01-01

    Petroleum Research Atlantic Canada maintains a website devoted to energy research and development in Atlantic Canada. The site can be viewed on the world wide web at www.energyresearch.ca. It includes a searchable database with information about researchers in Nova Scotia, their projects and published materials on issues related to hydrocarbons, alternative energy technologies, energy efficiency, climate change, environmental impacts and policy. The website also includes links to research funding agencies, external related databases and related energy organizations around the world. Nova Scotia-based users are invited to submit their academic, private or public research to the site. Before being uploaded into the database, a site administrator reviews and processes all new information. Users are asked to identify their areas of interest according to the following research categories: alternative or renewable energy technologies; climate change; coal; computer applications; economics; energy efficiency; environmental impacts; geology; geomatics; geophysics; health and safety; human factors; hydrocarbons; meteorology and oceanology (metocean) activities; petroleum operations in deep and shallow waters; policy; and power generation and supply. The database can be searched 5 ways according to topic, researchers, publication, projects or funding agency. refs., tabs., figs

  18. Scheme of database structure on decommissioning of the research reactor

    International Nuclear Information System (INIS)

    Park, H. S.; Park, S. K.; Kim, H. R.; Lee, D. K.; Jung, K. J.

    2001-01-01

    ISP (Information Strategy Planning), which is the first step of the whole database development, has been studied to manage effectively information and data related to the decommissioning activities of the Korea Research Reactor 1 and 2 (KRR-1 and 2). Since Korea has not acquired the technology of the decommissioning database management system, some record management system (RMS) of large nuclear facilities of national experience such as in the U.S.A, Japan, Belgium, and Russian were reviewed. In order to construct the database structure of the whole decommissioning activities such as the working information, radioactive waste treatment, and radiological surveying and analysis has been extracted from the whole dismantling process. These information and data will be used as the basic data to analyzed the matrix to find the entity relationship diagram and will contribute to the establishment of a business system design and the development of a decommissioning database system as well

  19. Fusion research and technology records in INIS database

    International Nuclear Information System (INIS)

    Hillebrand, C.D.

    1998-01-01

    This article is a summary of a survey study ''''A survey on publications in Fusion Research and Technology. Science and Technology Indicators in Fusion R and T'''' by the same author on Fusion R and T records in the International Nuclear Information System (INIS) bibliographic database. In that study, for the first time, all scientometric and bibliometric information contained in a bibliographic database, using INIS records, is analyzed and quantified, specific to a selected field of science and technology. A variety of new science and technology indicators which can be used for evaluating research and development activities is also presented in that study that study

  20. Efficacy and Safety of Deep Brain Stimulation in Tourette Syndrome: The International Tourette Syndrome Deep Brain Stimulation Public Database and Registry.

    Science.gov (United States)

    Martinez-Ramirez, Daniel; Jimenez-Shahed, Joohi; Leckman, James Frederick; Porta, Mauro; Servello, Domenico; Meng, Fan-Gang; Kuhn, Jens; Huys, Daniel; Baldermann, Juan Carlos; Foltynie, Thomas; Hariz, Marwan I; Joyce, Eileen M; Zrinzo, Ludvic; Kefalopoulou, Zinovia; Silburn, Peter; Coyne, Terry; Mogilner, Alon Y; Pourfar, Michael H; Khandhar, Suketu M; Auyeung, Man; Ostrem, Jill Louise; Visser-Vandewalle, Veerle; Welter, Marie-Laure; Mallet, Luc; Karachi, Carine; Houeto, Jean Luc; Klassen, Bryan Timothy; Ackermans, Linda; Kaido, Takanobu; Temel, Yasin; Gross, Robert E; Walker, Harrison C; Lozano, Andres M; Walter, Benjamin L; Mari, Zoltan; Anderson, William S; Changizi, Barbara Kelly; Moro, Elena; Zauber, Sarah Elizabeth; Schrock, Lauren E; Zhang, Jian-Guo; Hu, Wei; Rizer, Kyle; Monari, Erin H; Foote, Kelly D; Malaty, Irene A; Deeb, Wissam; Gunduz, Aysegul; Okun, Michael S

    2018-03-01

    Collective evidence has strongly suggested that deep brain stimulation (DBS) is a promising therapy for Tourette syndrome. To assess the efficacy and safety of DBS in a multinational cohort of patients with Tourette syndrome. The prospective International Deep Brain Stimulation Database and Registry included 185 patients with medically refractory Tourette syndrome who underwent DBS implantation from January 1, 2012, to December 31, 2016, at 31 institutions in 10 countries worldwide. Patients with medically refractory symptoms received DBS implantation in the centromedian thalamic region (93 of 163 [57.1%]), the anterior globus pallidus internus (41 of 163 [25.2%]), the posterior globus pallidus internus (25 of 163 [15.3%]), and the anterior limb of the internal capsule (4 of 163 [2.5%]). Scores on the Yale Global Tic Severity Scale and adverse events. The International Deep Brain Stimulation Database and Registry enrolled 185 patients (of 171 with available data, 37 females and 134 males; mean [SD] age at surgery, 29.1 [10.8] years [range, 13-58 years]). Symptoms of obsessive-compulsive disorder were present in 97 of 151 patients (64.2%) and 32 of 148 (21.6%) had a history of self-injurious behavior. The mean (SD) total Yale Global Tic Severity Scale score improved from 75.01 (18.36) at baseline to 41.19 (20.00) at 1 year after DBS implantation (P tic subscore improved from 21.00 (3.72) at baseline to 12.91 (5.78) after 1 year (P tic subscore improved from 16.82 (6.56) at baseline to 9.63 (6.99) at 1 year (P Tourette syndrome but also with important adverse events. A publicly available website on outcomes of DBS in patients with Tourette syndrome has been provided.

  1. Heterogeneous Biomedical Database Integration Using a Hybrid Strategy: A p53 Cancer Research Database

    Directory of Open Access Journals (Sweden)

    Vadim Y. Bichutskiy

    2006-01-01

    Full Text Available Complex problems in life science research give rise to multidisciplinary collaboration, and hence, to the need for heterogeneous database integration. The tumor suppressor p53 is mutated in close to 50% of human cancers, and a small drug-like molecule with the ability to restore native function to cancerous p53 mutants is a long-held medical goal of cancer treatment. The Cancer Research DataBase (CRDB was designed in support of a project to find such small molecules. As a cancer informatics project, the CRDB involved small molecule data, computational docking results, functional assays, and protein structure data. As an example of the hybrid strategy for data integration, it combined the mediation and data warehousing approaches. This paper uses the CRDB to illustrate the hybrid strategy as a viable approach to heterogeneous data integration in biomedicine, and provides a design method for those considering similar systems. More efficient data sharing implies increased productivity, and, hopefully, improved chances of success in cancer research. (Code and database schemas are freely downloadable, http://www.igb.uci.edu/research/research.html.

  2. Eye Care Professionals' Perspectives on Eye Donation and an Eye Donation Registry for Research: A Single-Institution, Cross-Sectional Study.

    Science.gov (United States)

    Williams, Andrew M; Allingham, R Rand; Stamer, W Daniel; Muir, Kelly W

    2016-06-01

    A centralized eye donation registry for research could help to bridge the gap between patients interested in donating their eyes to science and scientists who conduct research on human eye tissue. Previous research has demonstrated patient and family support for such a registry. In this study, we assessed the views that eye care professionals have toward an eye donation registry for research. Surveys were distributed to all 46 clinical faculty members of the Duke University Eye Center. In addition to collecting demographic information, the surveys assessed clinicians' experience with discussing eye donation with patients, described the proposed eye donation registry for research and asked how the registry would affect the clinicians' practice. A total of 21 eye care professionals returned the survey. Thirty-three percent reported discussing eye donation with patients, and 43% reported that a patient has asked about donating their eyes for research on their disease. Eighty-six percent of eye care professionals reported that a centralized registry would improve the way they work with patients who express a desire to donate their eyes for research. The majority of eye care professionals at our academic institution indicated that an eye donation registry for research would improve how they work with patients who are interested in donating their eyes for research on their disease. Future research should examine how best to communicate this registry to ophthalmic patients.

  3. GiSAO.db: a database for ageing research

    Directory of Open Access Journals (Sweden)

    Grillari Johannes

    2011-05-01

    Full Text Available Abstract Background Age-related gene expression patterns of Homo sapiens as well as of model organisms such as Mus musculus, Saccharomyces cerevisiae, Caenorhabditis elegans and Drosophila melanogaster are a basis for understanding the genetic mechanisms of ageing. For an effective analysis and interpretation of expression profiles it is necessary to store and manage huge amounts of data in an organized way, so that these data can be accessed and processed easily. Description GiSAO.db (Genes involved in senescence, apoptosis and oxidative stress database is a web-based database system for storing and retrieving ageing-related experimental data. Expression data of genes and miRNAs, annotation data like gene identifiers and GO terms, orthologs data and data of follow-up experiments are stored in the database. A user-friendly web application provides access to the stored data. KEGG pathways were incorporated and links to external databases augment the information in GiSAO.db. Search functions facilitate retrieval of data which can also be exported for further processing. Conclusions We have developed a centralized database that is very well suited for the management of data for ageing research. The database can be accessed at https://gisao.genome.tugraz.at and all the stored data can be viewed with a guest account.

  4. Gas Hydrate Research Database and Web Dissemination Channel

    Energy Technology Data Exchange (ETDEWEB)

    Micheal Frenkel; Kenneth Kroenlein; V Diky; R.D. Chirico; A. Kazakow; C.D. Muzny; M. Frenkel

    2009-09-30

    To facilitate advances in application of technologies pertaining to gas hydrates, a United States database containing experimentally-derived information about those materials was developed. The Clathrate Hydrate Physical Property Database (NIST Standard Reference Database {number_sign} 156) was developed by the TRC Group at NIST in Boulder, Colorado paralleling a highly-successful database of thermodynamic properties of molecular pure compounds and their mixtures and in association with an international effort on the part of CODATA to aid in international data sharing. Development and population of this database relied on the development of three components of information-processing infrastructure: (1) guided data capture (GDC) software designed to convert data and metadata into a well-organized, electronic format, (2) a relational data storage facility to accommodate all types of numerical and metadata within the scope of the project, and (3) a gas hydrate markup language (GHML) developed to standardize data communications between 'data producers' and 'data users'. Having developed the appropriate data storage and communication technologies, a web-based interface for both the new Clathrate Hydrate Physical Property Database, as well as Scientific Results from the Mallik 2002 Gas Hydrate Production Research Well Program was developed and deployed at http://gashydrates.nist.gov.

  5. Occupational amputations in Illinois 2000-2007: BLS vs. data linkage of trauma registry, hospital discharge, workers compensation databases and OSHA citations.

    Science.gov (United States)

    Friedman, Lee; Krupczak, Colin; Brandt-Rauf, Sherry; Forst, Linda

    2013-05-01

    Workplace amputation is a widespread, disabling, costly, and preventable public health problem. Thousands of occupational amputations occur each year, clustering in particular economic sectors, workplaces, and demographic groups such as young workers, Hispanics, and immigrants. To identify and describe work related amputations amongst Illinois residents that occur within Illinois as reported in three legally mandated State databases; to compare these cases with those identified through the BLS-Survey of Occupational Illnesses and Injuries (SOII); and to determine the extent of direct intervention by the Occupational Safety and Health Administration (OSHA) for these injuries in the State. We linked cases across three databases in Illinois - trauma registry, hospital discharge, and workers compensation claims. We describe amputation injuries in Illinois between 2000 and 2007, compare them to the BLS-SOII, and determine OSHA investigations of the companies where amputations occurred. There were 3984 amputations identified, 80% fingertips, in the Illinois databases compared to an estimated 3637, 94% fingertips, from BLS-SOII. Though the overall agreement is close, there were wide fluctuations (over- and under-estimations) in individual years between counts in the linked dataset and federal survey estimates. No OSHA inspections occurred for these injuries. Increased detection of workplace amputations is essential to targeting interventions and to evaluating program effectiveness. There should be mandatory reporting of all amputation injuries by employers and insurance companies within 24h of the event, and every injury should be investigated by OSHA. Health care providers should recognise amputation as a public health emergency and should be compelled to report. There should be a more comprehensive occupational injury surveillance system in the US that enhances the BLS-SOII through linkage with state databases. Addition of industry, occupation, and work

  6. Maternal smoking during pregnancy and academic achievement of offspring over time: A registry data-based cohort study.

    Science.gov (United States)

    Kristjansson, Alfgeir L; Thomas, Sabena; Lilly, Christa L; Thorisdottir, Ingibjorg E; Allegrante, John P; Sigfusdottir, Inga Dora

    2018-08-01

    Few studies have assessed the cumulative impact of maternal smoking during pregnancy (MSDP) on scholastic outcomes over time. We examined the relations between MSDP and academic achievement in the 4th, 7th and 10th grades using registry data collected at birth, during the neonatal period, and at each grade level from the 2000, LIFECOURSE study birth cohort in Reykjavik, Iceland (N = 1151, girls = 49.3%). Latent growth modeling showed that MSDP influenced Icelandic achievement scores, standardized to a range from 0 to 60, at baseline (β = -0.04), and over time (β = -0.05). Likewise, MSDP was negatively associated with standardized mathematics scores at baseline (ß = -0.09) and continued to exert a negative impact on mathematics scores over time (ß = -0.08) after controlling for gender, income, cohabitation, and baseline mathematics and Icelandic achievement scores. Results provide evidence of the persistent negative impact of MSDP on academic achievement in offspring. Findings support the proposition that children whose mothers smoke during the first trimester of pregnancy are, on average, at greater risk for poor scholastic outcomes over time than children whose mothers do not smoke during their first trimester. To our knowledge, this is the first study using a longitudinal cohort design to assess whether the impacts of maternal smoking during pregnancy may persist over time. This study contributes to the current state of knowledge by providing an assessment that focuses on the impact of smoking during pregnancy on academic achievement from childhood into early adolescence. Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.

  7. Innovative measures to combat rare diseases in China: The national rare diseases registry system, larger-scale clinical cohort studies, and studies in combination with precision medicine research.

    Science.gov (United States)

    Song, Peipei; He, Jiangjiang; Li, Fen; Jin, Chunlin

    2017-02-01

    China is facing the great challenge of treating the world's largest rare disease population, an estimated 16 million patients with rare diseases. One effort offering promise has been a pilot national project that was launched in 2013 and that focused on 20 representative rare diseases. Another government-supported special research program on rare diseases - the "Rare Diseases Clinical Cohort Study" - was launched in December 2016. According to the plan for this research project, the unified National Rare Diseases Registry System of China will be established as of 2020, and a large-scale cohort study will be conducted from 2016 to 2020. The project plans to develop 109 technical standards, to establish and improve 2 national databases of rare diseases - a multi-center clinical database and a biological sample library, and to conduct studies on more than 50,000 registered cases of 50 different rare diseases. More importantly, this study will be combined with the concept of precision medicine. Chinese population-specific basic information on rare diseases, clinical information, and genomic information will be integrated to create a comprehensive predictive model with a follow-up database system and a model to evaluate prognosis. This will provide the evidence for accurate classification, diagnosis, treatment, and estimation of prognosis for rare diseases in China. Numerous challenges including data standardization, protecting patient privacy, big data processing, and interpretation of genetic information still need to be overcome, but research prospects offer great promise.

  8. Databases

    Digital Repository Service at National Institute of Oceanography (India)

    Kunte, P.D.

    Information on bibliographic as well as numeric/textual databases relevant to coastal geomorphology has been included in a tabular form. Databases cover a broad spectrum of related subjects like coastal environment and population aspects, coastline...

  9. The EuroMyositis registry: an international collaborative tool to facilitate myositis research.

    Science.gov (United States)

    Lilleker, James B; Vencovsky, Jiri; Wang, Guochun; Wedderburn, Lucy R; Diederichsen, Louise Pyndt; Schmidt, Jens; Oakley, Paula; Benveniste, Olivier; Danieli, Maria Giovanna; Danko, Katalin; Thuy, Nguyen Thi Phuong; Vazquez-Del Mercado, Monica; Andersson, Helena; De Paepe, Boel; deBleecker, Jan L; Maurer, Britta; McCann, Liza J; Pipitone, Nicolo; McHugh, Neil; Betteridge, Zoe E; New, Paul; Cooper, Robert G; Ollier, William E; Lamb, Janine A; Krogh, Niels Steen; Lundberg, Ingrid E; Chinoy, Hector

    2018-01-01

    The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtypes, extramuscular involvement, environmental exposures and medications were investigated. Of 3067 IIM cases, 69% were female. The most common IIM subtype was dermatomyositis (DM) (31%). Smoking was more frequent in connective tissue disease overlap cases (45%, OR 1.44, 95% CI 1.09 to 1.90, p=0.012). Smoking was associated with interstitial lung disease (ILD) (OR 1.32, 95% CI 1.06 to 1.65, p=0.013), dysphagia (OR 1.43, 95% CI 1.16 to 1.77, p=0.001), malignancy ever (OR 1.78, 95% CI 1.36 to 2.33, p<0.001) and cardiac involvement (OR 2.40, 95% CI 1.60 to 3.60, p<0.001).Dysphagia occurred in 39% and cardiac involvement in 9%; either occurrence was associated with higher Health Assessment Questionnaire (HAQ) scores (adjusted OR 1.79, 95% CI 1.43 to 2.23, p<0.001). HAQ scores were also higher in inclusion body myositis cases (adjusted OR 3.85, 95% CI 2.52 to 5.90, p<0.001). Malignancy (ever) occurred in 13%, most commonly in DM (20%, OR 2.06, 95% CI 1.65 to 2.57, p<0.001).ILD occurred in 30%, most frequently in antisynthetase syndrome (71%, OR 10.7, 95% CI 8.6 to 13.4, p<0.001). Rash characteristics differed between adult-onset and juvenile-onset DM cases ('V' sign: 56% DM vs 16% juvenile-DM, OR 0.16, 95% CI 0.07 to 0.36, p<0.001). Glucocorticoids were used in 98% of cases, methotrexate in 71% and azathioprine in 51%. This large multicentre cohort demonstrates the importance of extramuscular involvement in patients with IIM, its association with smoking and its influence on disease severity. Our findings emphasise that IIM is a multisystem inflammatory disease and will help inform prognosis and clinical management of patients. © Article author(s) (or their employer(s) unless otherwise stated

  10. Linking international trademark databases to inform IP research and policy

    Energy Technology Data Exchange (ETDEWEB)

    Petrie, P.

    2016-07-01

    Researchers and policy makers are concerned with many international issues regarding trademarks, such as trademark squatting, cluttering, and dilution. Trademark application data can provide an evidence base to inform government policy regarding these issues, and can also produce quantitative insights into economic trends and brand dynamics. Currently, national trademark databases can provide insight into economic and brand dynamics at the national level, but gaining such insight at an international level is more difficult due to a lack of internationally linked trademark data. We are in the process of building a harmonised international trademark database (the “Patstat of trademarks”), in which equivalent trademarks have been identified across national offices. We have developed a pilot database that incorporates 6.4 million U.S., 1.3 million Australian, and 0.5 million New Zealand trademark applications, spanning over 100 years. The database will be extended to incorporate trademark data from other participating intellectual property (IP) offices as they join the project. Confirmed partners include the United Kingdom, WIPO, and OHIM. We will continue to expand the scope of the project, and intend to include many more IP offices from around the world. In addition to building the pilot database, we have developed a linking algorithm that identifies equivalent trademarks (TMs) across the three jurisdictions. The algorithm can currently be applied to all applications that contain TM text; i.e. around 96% of all applications. In its current state, the algorithm successfully identifies ~ 97% of equivalent TMs that are known to be linked a priori, as they have shared international registration number through the Madrid protocol. When complete, the internationally linked trademark database will be a valuable resource for researchers and policy-makers in fields such as econometrics, intellectual property rights, and brand policy. (Author)

  11. Concomitant hollow viscus injuries in patients with blunt hepatic and splenic injuries: an analysis of a National Trauma Registry database.

    Science.gov (United States)

    Swaid, Forat; Peleg, Kobi; Alfici, Ricardo; Matter, Ibrahim; Olsha, Oded; Ashkenazi, Itamar; Givon, Adi; Kessel, Boris

    2014-09-01

    Non-operative management has become the standard approach for treating stable patients sustaining blunt hepatic or splenic injuries in the absence of other indications for laparotomy. The liberal use of computed tomography (CT) has reduced the rate of unnecessary immediate laparotomies; however, due to its limited sensitivity in the diagnosis of hollow viscus injuries (HVI), this may be at the expense of a rise in the incidence of missed HVI. The aim of this study was to assess the incidence of concomitant HVI in blunt trauma patients diagnosed with hepatic and/or splenic injuries, and to evaluate whether a correlation exists between this incidence and the severity of hepatic or splenic injuries. A retrospective cohort study involving blunt trauma patients with splenic and/or liver injuries, between the years 1998 and 2012 registered in the Israel National Trauma Registry. The association between the presence and severity of splenic and/or liver injuries and the incidence of HVI was examined. Of the 57,130 trauma victims identified as suffering from blunt torso injuries, 2335 (4%) sustained hepatic injuries without splenic injuries (H group), 3127 (5.4%) had splenic injuries without hepatic injuries (S group), and 564 (1%) suffered from both hepatic and splenic injuries (H+S group). Overall, 957 patients sustained 1063 HVI. The incidence of HVI among blunt torso trauma victims who sustained neither splenic nor hepatic injuries was 1.5% which is significantly lower than in the S (3.1%), H (3.1%), and H+S (6.7%) groups. In the S group, there was a clear correlation between the severity of the splenic injury and the incidence of HVI. This correlation was not found in the H group. The presence of blunt splenic and/or hepatic injuries predicts a higher incidence of HVI, especially if combined. While in blunt splenic injury patients there is a clear correlation between the incidence of HVI and the severity of splenic injury, such a correlation does not exist in patients

  12. Linkage between the Danish National Health Service Prescription Database, the Danish Fetal Medicine Database, and other Danish registries as a tool for the study of drug safety in pregnancy

    DEFF Research Database (Denmark)

    Pedersen, Lars Henning; Petersen, Olav Bjørn; Nørgaard, Mette

    2016-01-01

    A linked population-based database is being created in Denmark for research on drug safety during pregnancy. It combines information from the Danish National Health Service Prescription Database (with information on all prescriptions reimbursed in Denmark since 2004), the Danish Fetal Medicine...

  13. Concierge: Personal database software for managing digital research resources

    Directory of Open Access Journals (Sweden)

    Hiroyuki Sakai

    2007-11-01

    Full Text Available This article introduces a desktop application, named Concierge, for managing personal digital research resources. Using simple operations, it enables storage of various types of files and indexes them based on content descriptions. A key feature of the software is a high level of extensibility. By installing optional plug-ins, users can customize and extend the usability of the software based on their needs. In this paper, we also introduce a few optional plug-ins: literaturemanagement, electronic laboratory notebook, and XooNlps client plug-ins. XooNIps is a content management system developed to share digital research resources among neuroscience communities. It has been adopted as the standard database system in Japanese neuroinformatics projects. Concierge, therefore, offers comprehensive support from management of personal digital research resources to their sharing in open-access neuroinformatics databases such as XooNIps. This interaction between personal and open-access neuroinformatics databases is expected to enhance the dissemination of digital research resources. Concierge is developed as an open source project; Mac OS X and Windows XP versions have been released at the official site (http://concierge.sourceforge.jp.

  14. Databases

    Directory of Open Access Journals (Sweden)

    Nick Ryan

    2004-01-01

    Full Text Available Databases are deeply embedded in archaeology, underpinning and supporting many aspects of the subject. However, as well as providing a means for storing, retrieving and modifying data, databases themselves must be a result of a detailed analysis and design process. This article looks at this process, and shows how the characteristics of data models affect the process of database design and implementation. The impact of the Internet on the development of databases is examined, and the article concludes with a discussion of a range of issues associated with the recording and management of archaeological data.

  15. United States Transuranium and Uranium Registries: Researching radiation protection. USTUR annual report for February 1, 1999 through January 31, 2000

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed.)

    2000-07-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 1999 through January 2000.

  16. United States Transuranium and Uranium Registries: Researching radiation protection. USTUR annual report for February 1, 1999 through January 31, 2000

    International Nuclear Information System (INIS)

    Ehrhart, Susan M.; Filipy, Ronald E.

    2000-01-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 1999 through January 2000

  17. Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

    Directory of Open Access Journals (Sweden)

    Kátia Regina da Silva

    Full Text Available The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.We developed a device registry framework involving the following steps: (1 Data standards definition and representation of the research workflow, (2 Development of electronic case report forms using REDCap (Research Electronic Data Capture, (3 Data collection according to the clinical research workflow and, (4 Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5 Data quality control and (6 Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT we found 130 clinical trials which are potentially correlated with our pacemaker registry.This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to

  18. Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

    Science.gov (United States)

    da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.

    2013-01-01

    Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework

  19. Development of a combined database for meta-epidemiological research

    DEFF Research Database (Denmark)

    Savović, Jelena; Harris, Ross J; Wood, Lesley

    2010-01-01

    or review. Unique identifiers were assigned to each reference and used to identify duplicate trials. Sets of meta-analyses with overlapping trials were identified and duplicates removed. Overlapping trials were used to examine agreement between assessments of trial characteristics. The combined database...... database will be used to examine the combined evidence on sources of bias in randomized controlled trials. The strategy used to remove overlap between meta-analyses may be of use for future empirical research. Copyright © 2010 John Wiley & Sons, Ltd.......Collections of meta-analyses assembled in meta-epidemiological studies are used to study associations of trial characteristics with intervention effect estimates. However, methods and findings are not consistent across studies. To combine data from 10 meta-epidemiological studies into a single...

  20. The EuroMyositis registry

    DEFF Research Database (Denmark)

    Lilleker, James B; Vencovsky, Jiri; Wang, Guochun

    2018-01-01

    AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...

  1. Research Groups & Research Subjects - RED | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available rch Groups & Research Subjects Data detail Data name Research Groups & Research Sub... Number of data entries 174 entries Data item Description Research ID Research ID (Subject number) Institute...tion Download License Update History of This Database Site Policy | Contact Us Research Groups & Research Subjects - RED | LSDB Archive ... ...switchLanguage; BLAST Search Image Search Home About Archive Update History Data List Contact us RED Resea... Organization Section Section (Department) User name User name Experimental title Experimental title (Rese

  2. The Epimed Monitor ICU Database®: a cloud-based national registry for adult intensive care unit patients in Brazil.

    Science.gov (United States)

    Zampieri, Fernando Godinho; Soares, Márcio; Borges, Lunna Perdigão; Salluh, Jorge Ibrain Figueira; Ranzani, Otávio Tavares

    2017-01-01

    To describe the Epimed Monitor Database®, a Brazilian intensive care unit quality improvement database. We described the Epimed Monitor® Database, including its structure and core data. We presented aggregated informative data from intensive care unit admissions from 2010 to 2016 using descriptive statistics. We also described the expansion and growth of the database along with the geographical distribution of participating units in Brazil. The core data from the database includes demographic, administrative and physiological parameters, as well as specific report forms used to gather detailed data regarding the use of intensive care unit resources, infectious episodes, adverse events and checklists for adherence to best clinical practices. As of the end of 2016, 598 adult intensive care units in 318 hospitals totaling 8,160 intensive care unit beds were participating in the database. Most units were located at private hospitals in the southeastern region of the country. The number of yearly admissions rose during this period and included a predominance of medical admissions. The proportion of admissions due to cardiovascular disease declined, while admissions due to sepsis or infections became more common. Illness severity (Simplified Acute Physiology Score - SAPS 3 - 62 points), patient age (mean = 62 years) and hospital mortality (approximately 17%) remained reasonably stable during this time period. A large private database of critically ill patients is feasible and may provide relevant nationwide epidemiological data for quality improvement and benchmarking purposes among the participating intensive care units. This database is useful not only for administrative reasons but also for the improvement of daily care by facilitating the adoption of best practices and use for clinical research.

  3. The FoodCast Research Image Database (FRIDa

    Directory of Open Access Journals (Sweden)

    Francesco eForoni

    2013-03-01

    Full Text Available In recent years we have witnessed to an increasing interest in food processing and eating behaviors. This is probably due to several reasons. The biological relevance of food choices, the complexity of the food-rich environment in which we presently live (making food-intake regulation difficult, and the increasing health care cost due to illness associated with food (food hazards, food contamination, and aberrant food-intake. Despite the importance of the issues and the relevance of this research, comprehensive and validated databases of stimuli are rather limited, outdated, or not available for noncommercial purposes to independent researchers who aim at developing their own research program. The FoodCast Research Image Database (FRIDa we present here is comprised of 877 images from eight different categories: natural-food (e.g., strawberry, transformed-food (e.g., French fries, rotten-food (e.g., moldy banana, natural-nonfood items (e.g., pinecone, artificial food-related objects (e.g., teacup, artificial objects (e.g., guitar, animals (e.g., camel, and scenes (e.g., airport. FRIDa has been validated on a sample of healthy participants (N=73 on standard variables (e.g., valence, familiarity etc. as well as on other variables specifically related to food items (e.g., perceived calorie content; it also includes data on the visual features of the stimuli (e.g., brightness, high frequency power etc.. FRIDa is a well-controlled, flexible, validated, and freely available (http://foodcast.sissa.it/neuroscience/ tool for researchers in a wide range of academic fields and industry.

  4. Influenza research database: an integrated bioinformatics resource for influenza virus research

    Science.gov (United States)

    The Influenza Research Database (IRD) is a U.S. National Institute of Allergy and Infectious Diseases (NIAID)-sponsored Bioinformatics Resource Center dedicated to providing bioinformatics support for influenza virus research. IRD facilitates the research and development of vaccines, diagnostics, an...

  5. Geo-scientific database for research and development purposes

    International Nuclear Information System (INIS)

    Tabani, P.; Mangeot, A.; Crabol, V.; Delage, P.; Dewonck, S.; Auriere, C.

    2012-01-01

    Document available in extended abstract form only. The Research and Development Division must manage, secure and reliable manner, a large number of data from scientific disciplines and diverse means of acquisition (observations, measurements, experiments, etc.). This management is particularly important for the Underground research Laboratory, the source of many recording continuous measurements. Thus, from its conception, Andra has implemented two management tools of scientific information, the 'Acquisition System and Data Management' [SAGD] and GEO database with its associated applications. Beyond its own needs, Andra wants to share its achievements with the scientific community, and it therefore provides the data stored in its databases or samples of rock or water when they are available. Acquisition and Data Management (SAGD) This system manages data from sensors installed at several sites. Some sites are on the surface (piezometric, atmospheric and environmental stations), the other are in the Underground Research Laboratory. This system also incorporates data from experiments in which Andra participates in Mont Terri Laboratory in Switzerland. S.A.G.D fulfils these objectives by: - Make available in real time on a single system, with scientists from Andra but also different partners or providers who need it, all experimental data from measurement points - Displaying the recorded data on temporal windows and specific time step, - Allowing remote control of the experimentations, - Ensuring the traceability of all recorded information, - Ensuring data storage in a data base. S.A.G.D has been deployed in the first experimental drift at -445 m in November 2004. It was subsequently extended to the underground Mont Terri laboratory in Switzerland in 2005, to the entire surface logging network of the Meuse / Haute-Marne Center in 2008 and to the environmental network in 2011. All information is acquired, stored and manage by a software called Geoscope. This software

  6. Research progress in muscle-derived stem cells: Literature retrieval results based on international database.

    Science.gov (United States)

    Zhang, Li; Wang, Wei

    2012-04-05

    To identify global research trends of muscle-derived stem cells (MDSCs) using a bibliometric analysis of the Web of Science, Research Portfolio Online Reporting Tools of the National Institutes of Health (NIH), and the Clinical Trials registry database (ClinicalTrials.gov). We performed a bibliometric analysis of data retrievals for MDSCs from 2002 to 2011 using the Web of Science, NIH, and ClinicalTrials.gov. (1) Web of Science: (a) peer-reviewed articles on MDSCs that were published and indexed in the Web of Science. (b) Type of articles: original research articles, reviews, meeting abstracts, proceedings papers, book chapters, editorial material and news items. (c) Year of publication: 2002-2011. (d) Citation databases: Science Citation Index-Expanded (SCI-E), 1899-present; Conference Proceedings Citation Index-Science (CPCI-S), 1991-present; Book Citation Index-Science (BKCI-S), 2005-present. (2) NIH: (a) Projects on MDSCs supported by the NIH. (b) Fiscal year: 1988-present. (3) ClinicalTrials.gov: All clinical trials relating to MDSCs were searched in this database. (1) Web of Science: (a) Articles that required manual searching or telephone access. (b) We excluded documents that were not published in the public domain. (c) We excluded a number of corrected papers from the total number of articles. (d) We excluded articles from the following databases: Social Sciences Citation Index (SSCI), 1898-present; Arts & Humanities Citation Index (A&HCI), 1975-present; Conference Proceedings Citation Index - Social Science & Humanities (CPCI-SSH), 1991-present; Book Citation Index - Social Sciences & Humanities (BKCI-SSH), 2005-present; Current Chemical Reactions (CCR-EXPANDED), 1985-present; Index Chemicus (IC), 1993-present. (2) NIH: (a) We excluded publications related to MDSCs that were supported by the NIH. (b) We limited the keyword search to studies that included MDSCs within the title or abstract. (3) ClinicalTrials.gov: (a) We excluded clinical trials that were

  7. Nailfold capillaroscopy in systemic sclerosis: data from the EULAR scleroderma trials and research (EUSTAR) database.

    Science.gov (United States)

    Ingegnoli, Francesca; Ardoino, Ilaria; Boracchi, Patrizia; Cutolo, Maurizio

    2013-09-01

    The aims of this study were to obtain cross-sectional data on capillaroscopy in an international multi-center cohort of Systemic Sclerosis (SSc) and to investigate the frequency of the capillaroscopic patterns and their disease-phenotype associations. Data collected between June 2004 and October 2011 in the EULAR Scleroderma Trials and Research (EUSTAR) registry were examined. Patients' profiles based on clinical and laboratory data were obtained by cluster analysis and the association between profiles and capillaroscopy was investigated by multinomial logistic regression. 62 of the 110 EUSTAR centers entered data on capillaroscopy in the EUSTAR database. 376 of the 2754 patients (13.65%) were classified as scleroderma pattern absent, but non-specific capillary abnormalities were noted in 55.48% of the cases. Four major patients' profiles were identified characterized by a progressive severity for skin involvement, as well as an increased number of systemic manifestations. The "early" and "active" scleroderma patterns were generally observed in patients with mild/moderate skin involvement and a low number of disease manifestations, while the "late" scleroderma pattern was found more frequently in the more severe forms of the disease. These data indicate the importance of capillaroscopy in SSc management and that capillaroscopic patterns are directly related to the extent of organ involvement. Copyright © 2013 Elsevier Inc. All rights reserved.

  8. Research Note on the Energy Infrastructure Attack Database (EIAD

    Directory of Open Access Journals (Sweden)

    Jennifer Giroux

    2013-12-01

    Full Text Available The January 2013 attack on the In Amenas natural gas facility drew international attention. However this attack is part of a portrait of energy infrastructure targeting by non-state actors that spans the globe. Data drawn from the Energy Infrastructure Attack Database (EIAD shows that in the last decade there were, on average, nearly 400 annual attacks carried out by armed non-state actors on energy infrastructure worldwide, a figure that was well under 200 prior to 1999. This data reveals a global picture whereby violent non-state actors target energy infrastructures to air grievances, communicate to governments, impact state economic interests, or capture revenue in the form of hijacking, kidnapping ransoms, theft. And, for politically motivated groups, such as those engaged in insurgencies, attacking industry assets garners media coverage serving as a facilitator for international attention. This research note will introduce EIAD and position its utility within various research areas where the targeting of energy infrastructure, or more broadly energy infrastructure vulnerability, has been addressed, either directly or indirectly. We also provide a snapshot of the initial analysis of the data between 1980-2011, noting specific temporal and spatial trends, and then conclude with a brief discussion on the contribution of EIAD, highlighting future research trajectories. 

  9. Ethnic differences in the occurrence of acute coronary syndrome: results of the Malaysian National Cardiovascular Disease (NCVD) Database Registry (March 2006 - February 2010).

    Science.gov (United States)

    Lu, Hou Tee; Nordin, Rusli Bin

    2013-11-06

    The National Cardiovascular Disease (NCVD) Database Registry represents one of the first prospective, multi-center registries to treat and prevent coronary artery disease (CAD) in Malaysia. Since ethnicity is an important consideration in the occurrence of acute coronary syndrome (ACS) globally, therefore, we aimed to identify the role of ethnicity in the occurrence of ACS among high-risk groups in the Malaysian population. The NCVD involves more than 15 Ministry of Health (MOH) hospitals nationwide, universities and the National Heart Institute and enrolls patients presenting with ACS [ST-elevation myocardial infarction (STEMI), non-ST elevation myocardial infarction (NSTEMI) and unstable angina (UA)]. We analyzed ethnic differences across socio-demographic characteristics, hospital medications and invasive therapeutic procedures, treatment of STEMI and in-hospital clinical outcomes. We enrolled 13,591 patients. The distribution of the NCVD population was as follows: 49.0% Malays, 22.5% Chinese, 23.1% Indians and 5.3% Others (representing other indigenous groups and non-Malaysian nationals). The mean age (SD) of ACS patients at presentation was 59.1 (12.0) years. More than 70% were males. A higher proportion of patients within each ethnic group had more than two coronary risk factors. Malays had higher body mass index (BMI). Chinese had highest rate of hypertension and hyperlipidemia. Indians had higher rate of diabetes mellitus (DM) and family history of premature CAD. Overall, more patients had STEMI than NSTEMI or UA among all ethnic groups. The use of aspirin was more than 94% among all ethnic groups. Utilization rates for elective and emergency percutaneous coronary intervention (PCI) and coronary artery bypass graft (CABG) were low among all ethnic groups. In STEMI, fibrinolysis (streptokinase) appeared to be the dominant treatment options (>70%) for all ethnic groups. In-hospital mortality rates for STEMI across ethnicity ranges from 8.1% to 10.1% (p = 0

  10. The contemporary management of prostate cancer in the United States: lessons from the cancer of the prostate strategic urologic research endeavor (CapSURE), a national disease registry.

    Science.gov (United States)

    Cooperberg, Matthew R; Broering, Jeanette M; Litwin, Mark S; Lubeck, Deborah P; Mehta, Shilpa S; Henning, James M; Carroll, Peter R

    2004-04-01

    The epidemiology and treatment of prostate cancer have changed dramatically in the prostate specific antigen era. A large disease registry facilitates the longitudinal observation of trends in disease presentation, management and outcomes. The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national disease registry of more than 10000 men with prostate cancer accrued at 31 primarily community based sites across the United States. Demographic, clinical, quality of life and resource use variables are collected on each patient. We reviewed key findings from the data base in the last 8 years in the areas of disease management trends, and oncological and quality of life outcomes. Prostate cancer is increasingly diagnosed with low risk clinical characteristics. With time patients have become less likely to receive pretreatment imaging tests, less likely to pursue watchful waiting and more likely to receive brachytherapy or hormonal therapy. Relatively few patients treated with radical prostatectomy in the database are under graded or under staged before surgery, whereas the surgical margin rate is comparable to that in academic series. CaPSURE data confirm the usefulness of percent positive biopsies in risk assessment and they have further been used to validate multiple preoperative nomograms. CaPSURE results strongly affirm the necessity of patient reported quality of life assessment. Multiple studies have compared the quality of life impact of various treatment options, particularly in terms of urinary and sexual function, and bother. The presentation and management of prostate cancer have changed substantially in the last decade. CaPSURE will continue to track these trends as well as oncological and quality of life outcomes, and will continue to be an invaluable resource for the study of prostate cancer at the national level.

  11. Practice databases and their uses in clinical research.

    Science.gov (United States)

    Tierney, W M; McDonald, C J

    1991-04-01

    A few large clinical information databases have been established within larger medical information systems. Although they are smaller than claims databases, these clinical databases offer several advantages: accurate and timely data, rich clinical detail, and continuous parameters (for example, vital signs and laboratory results). However, the nature of the data vary considerably, which affects the kinds of secondary analyses that can be performed. These databases have been used to investigate clinical epidemiology, risk assessment, post-marketing surveillance of drugs, practice variation, resource use, quality assurance, and decision analysis. In addition, practice databases can be used to identify subjects for prospective studies. Further methodologic developments are necessary to deal with the prevalent problems of missing data and various forms of bias if such databases are to grow and contribute valuable clinical information.

  12. Database on epidemiological survey in high background radiation research

    International Nuclear Information System (INIS)

    Zhou Sunyuan; Guo Furong; Liu Yusheng

    1992-01-01

    In order to store and check the data of the health survey in high background radiation area (HBRA) and control area in Guangdong Province, and to use these data in future, three databases were set up by using RBASE 5000 database software. (1) HD: the database based on the household registers especially established for the health survey from 1979 to 1986, covering more than 160000 subjects and 2200000 data. (2) DC: the database based on the registration cards of deaths from cancers and all other diseases during the period of 1975-1986 including more than 10000 cases and 260000 data. (3) MCC: the database for the case-control study on mutation-related factors for four kinds of cancers (liver, stomach, lung cancers and leukemia), embracing 626 subjects and close to 90000 data. The data in the databases were checked up with the original records and compared with the manual analytical results

  13. Academic impact of a public electronic health database: bibliometric analysis of studies using the general practice research database.

    Directory of Open Access Journals (Sweden)

    Yu-Chun Chen

    Full Text Available BACKGROUND: Studies that use electronic health databases as research material are getting popular but the influence of a single electronic health database had not been well investigated yet. The United Kingdom's General Practice Research Database (GPRD is one of the few electronic health databases publicly available to academic researchers. This study analyzed studies that used GPRD to demonstrate the scientific production and academic impact by a single public health database. METHODOLOGY AND FINDINGS: A total of 749 studies published between 1995 and 2009 with 'General Practice Research Database' as their topics, defined as GPRD studies, were extracted from Web of Science. By the end of 2009, the GPRD had attracted 1251 authors from 22 countries and been used extensively in 749 studies published in 193 journals across 58 study fields. Each GPRD study was cited 2.7 times by successive studies. Moreover, the total number of GPRD studies increased rapidly, and it is expected to reach 1500 by 2015, twice the number accumulated till the end of 2009. Since 17 of the most prolific authors (1.4% of all authors contributed nearly half (47.9% of GPRD studies, success in conducting GPRD studies may accumulate. The GPRD was used mainly in, but not limited to, the three study fields of "Pharmacology and Pharmacy", "General and Internal Medicine", and "Public, Environmental and Occupational Health". The UK and United States were the two most active regions of GPRD studies. One-third of GRPD studies were internationally co-authored. CONCLUSIONS: A public electronic health database such as the GPRD will promote scientific production in many ways. Data owners of electronic health databases at a national level should consider how to reduce access barriers and to make data more available for research.

  14. Intra-disciplinary differences in database coverage and the consequences for bibliometric research

    DEFF Research Database (Denmark)

    Faber Frandsen, Tove; Nicolaisen, Jeppe

    2008-01-01

    Bibliographic databases (including databases based on open access) are routinely used for bibliometric research. The value of a specific database depends to a large extent on the coverage of the discipline(s) under study. A number of studies have determined the coverage of databases in specific d...... and psychology). The point extends to include both the uneven coverage of specialties and research traditions. The implications for bibliometric research are discussed, and precautions which need to be taken are outlined. ...

  15. The Nordic prescription databases as a resource for pharmacoepidemiological research

    DEFF Research Database (Denmark)

    Wettermark, B; Zoëga, H; Furu, K

    2013-01-01

    All five Nordic countries have nationwide prescription databases covering all dispensed drugs, with potential for linkage to outcomes. The aim of this review is to present an overview of therapeutic areas studied and methods applied in pharmacoepidemiologic studies using data from these databases....

  16. Development of operation management database for research reactors

    International Nuclear Information System (INIS)

    Zhang Xinjun; Chen Wei; Yang Jun

    2005-01-01

    An Operation Database for Pulsed Reactor has been developed on the platform for Microsoft visual C++ 6.0. This database includes four function modules, fuel elements management, incident management, experiment management and file management. It is essential for reactor security and information management. (authors)

  17. Reactor core materials research and integrated material database establishment

    International Nuclear Information System (INIS)

    Ryu, Woo Seog; Jang, J. S.; Kim, D. W.

    2002-03-01

    Mainly two research areas were covered in this project. One is to establish the integrated database of nuclear materials, and the other is to study the behavior of reactor core materials, which are usually under the most severe condition in the operating plants. During the stage I of the project (for three years since 1999) in- and out of reactor properties of stainless steel, the major structural material for the core structures of PWR (Pressurized Water Reactor), were evaluated and specification of nuclear grade material was established. And the damaged core components from domestic power plants, e.g. orifice of CVCS, support pin of CRGT, etc. were investigated and the causes were revealed. To acquire more resistant materials to the nuclear environments, development of the alternative alloys was also conducted. For the integrated DB establishment, a task force team was set up including director of nuclear materials technology team, and projector leaders and relevant members from each project. The DB is now opened in public through the Internet

  18. French registry of workers handling engineered nanomaterials as an instrument of integrated system for surveillance and research

    Science.gov (United States)

    Guseva Canu, I.; Boutou-Kempf, O.; Delabre, L.; Ducamp, S.; Iwatsubo, Y.; Marchand, J. L.; Imbernon, E.

    2013-04-01

    Despite the lack of data on the human health potential risks related to the engineered nanomaterials (ENM) exposure, ENM handling spreads in industry. The French government officially charged the InVS to develop an epidemiological surveillance of workers occupationally exposed to ENM. An initial surveillance plan was proposed on the basis of literature review and discussions with national and international ENM and occupational safety and health (OSH) experts. In site investigations and technical visits were then carried out to build an adequate surveillance system and to assess its feasibility. The current plan consists of a multi-step methodology where exposure registry construction is paramount. Workers potentially exposed to carbon nanotubes (CNT) or nanometric titanium dioxide (TiO2) will be identified using a 3-level approach: 1-identification and selection of companies concerned with ENM exposure (based on compulsory declaration and questionnaires), 2-in site exposure assessment and identification of the jobs/tasks with ENM exposure (based on job-expose matrix, further supplemented with measurements), and 3-identification of workers concerned. Data of interest will be collected by questionnaire. Companies and workers inclusion questionnaires are designed and currently under validation. This registration is at the moment planned for three years but could be extended and include other ENM. A prospective cohort study will be established from this registry, to pursue surveillance objectives and serve as an infrastructure for performing epidemiological and panel studies with specific research objectives.

  19. French registry of workers handling engineered nanomaterials as an instrument of integrated system for surveillance and research

    International Nuclear Information System (INIS)

    Guseva Canu, I; Boutou-Kempf, O; Delabre, L; Ducamp, S; Iwatsubo, Y; Marchand, J L; Imbernon, E

    2013-01-01

    Despite the lack of data on the human health potential risks related to the engineered nanomaterials (ENM) exposure, ENM handling spreads in industry. The French government officially charged the InVS to develop an epidemiological surveillance of workers occupationally exposed to ENM. An initial surveillance plan was proposed on the basis of literature review and discussions with national and international ENM and occupational safety and health (OSH) experts. In site investigations and technical visits were then carried out to build an adequate surveillance system and to assess its feasibility. The current plan consists of a multi-step methodology where exposure registry construction is paramount. Workers potentially exposed to carbon nanotubes (CNT) or nanometric titanium dioxide (TiO 2 ) will be identified using a 3-level approach: 1-identification and selection of companies concerned with ENM exposure (based on compulsory declaration and questionnaires), 2-in site exposure assessment and identification of the jobs/tasks with ENM exposure (based on job-expose matrix, further supplemented with measurements), and 3-identification of workers concerned. Data of interest will be collected by questionnaire. Companies and workers inclusion questionnaires are designed and currently under validation. This registration is at the moment planned for three years but could be extended and include other ENM. A prospective cohort study will be established from this registry, to pursue surveillance objectives and serve as an infrastructure for performing epidemiological and panel studies with specific research objectives.

  20. Academic Impact of a Public Electronic Health Database: Bibliometric Analysis of Studies Using the General Practice Research Database

    Science.gov (United States)

    Chen, Yu-Chun; Wu, Jau-Ching; Haschler, Ingo; Majeed, Azeem; Chen, Tzeng-Ji; Wetter, Thomas

    2011-01-01

    Background Studies that use electronic health databases as research material are getting popular but the influence of a single electronic health database had not been well investigated yet. The United Kingdom's General Practice Research Database (GPRD) is one of the few electronic health databases publicly available to academic researchers. This study analyzed studies that used GPRD to demonstrate the scientific production and academic impact by a single public health database. Methodology and Findings A total of 749 studies published between 1995 and 2009 with ‘General Practice Research Database’ as their topics, defined as GPRD studies, were extracted from Web of Science. By the end of 2009, the GPRD had attracted 1251 authors from 22 countries and been used extensively in 749 studies published in 193 journals across 58 study fields. Each GPRD study was cited 2.7 times by successive studies. Moreover, the total number of GPRD studies increased rapidly, and it is expected to reach 1500 by 2015, twice the number accumulated till the end of 2009. Since 17 of the most prolific authors (1.4% of all authors) contributed nearly half (47.9%) of GPRD studies, success in conducting GPRD studies may accumulate. The GPRD was used mainly in, but not limited to, the three study fields of “Pharmacology and Pharmacy”, “General and Internal Medicine”, and “Public, Environmental and Occupational Health”. The UK and United States were the two most active regions of GPRD studies. One-third of GRPD studies were internationally co-authored. Conclusions A public electronic health database such as the GPRD will promote scientific production in many ways. Data owners of electronic health databases at a national level should consider how to reduce access barriers and to make data more available for research. PMID:21731733

  1. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn

    2016-01-01

    AIM OF DATABASE: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. STUDY POPULATION: DNOR has...... advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. CONCLUSION: The establishment of DNOR has optimized the quality...

  2. Brassica ASTRA: an integrated database for Brassica genomic research.

    Science.gov (United States)

    Love, Christopher G; Robinson, Andrew J; Lim, Geraldine A C; Hopkins, Clare J; Batley, Jacqueline; Barker, Gary; Spangenberg, German C; Edwards, David

    2005-01-01

    Brassica ASTRA is a public database for genomic information on Brassica species. The database incorporates expressed sequences with Swiss-Prot and GenBank comparative sequence annotation as well as secondary Gene Ontology (GO) annotation derived from the comparison with Arabidopsis TAIR GO annotations. Simple sequence repeat molecular markers are identified within resident sequences and mapped onto the closely related Arabidopsis genome sequence. Bacterial artificial chromosome (BAC) end sequences derived from the Multinational Brassica Genome Project are also mapped onto the Arabidopsis genome sequence enabling users to identify candidate Brassica BACs corresponding to syntenic regions of Arabidopsis. This information is maintained in a MySQL database with a web interface providing the primary means of interrogation. The database is accessible at http://hornbill.cspp.latrobe.edu.au.

  3. Chinese SLE Treatment and Research group (CSTAR) registry VII: prevalence and clinical significance of serositis in Chinese patients with systemic lupus erythematosus.

    Science.gov (United States)

    Zhao, J; Bai, W; Zhu, P; Zhang, X; Liu, S; Wu, L; Ma, L; Bi, L; Zuo, X; Sun, L; Huang, C; Tian, X; Li, M; Zhao, Y; Zeng, X

    2016-05-01

    To investigate both the prevalence and clinical characteristics of serositis in Chinese patients with systemic lupus erythematosus (SLE) in a large cohort in the Chinese SLE Treatment and Research group (CSTAR) database. A prospective cross-sectional study of patients with SLE was conducted based on the data from the CSTAR registry. Serositis was defined according to the 1999 revised American College of Rheumatology (ACR) criteria for SLE - that is, pleuritis/pleural effusion and/or pericarditis/pericardial effusion detected by echocardiography, chest X-ray or chest computerized tomography (CT) scan. Peritonitis/peritoneal effusion were confirmed by abdominal ultrasonography. We analysed the prevalence and clinical associations of serositis with demographic data, organ involvements, laboratory findings and SLE disease activity. Of 2104 patients with SLE, 345 were diagnosed with serositis. The prevalence of lupus nephritis (LN), interstitial lung disease and pulmonary arterial hypertension, as well as the presence of leukocytopenia, thrombocytopenia, hypocomplementemia and anti-dsDNA antibodies was significantly higher in patients with serositis (P Lupus-related peritonitis had similar clinical manifestations and laboratory profiles as serositis caused by SLE. There is a significant association of nephropathy, interstitial lung disease, pulmonary arterial hypertension, hypocomplementemia, leukocytopenia, thrombocytopenia and elevated anti-dsDNA antibodies with serositis. The results suggest that higher SLE disease activity contributes to serositis development, and should be treated aggressively. © The Author(s) 2016.

  4. Danish National Lymphoma Registry

    DEFF Research Database (Denmark)

    Arboe, Bente; Josefsson, Pär; Jørgensen, Judit

    2016-01-01

    AIM OF DATABASE: The Danish National Lymphoma Registry (LYFO) was established in order to monitor and improve the diagnostic evaluation and the quality of treatment of all lymphoma patients in Denmark. STUDY POPULATION: The LYFO database was established in 1982 as a seminational database including...... all lymphoma patients referred to the departments of hematology. The database became nationwide on January 1, 2000. MAIN VARIABLES: The main variables include both clinical and paraclinical variables as well as details of treatment and treatment evaluation. Up to four forms are completed for each......-100 years) and a male/female ratio of 1.23:1. Patients can be registered with any of 42 different subtypes according to the World Health Organization classifications. CONCLUSION: LYFO is a nationwide database for all lymphoma patients in Denmark and includes detailed information. This information is used...

  5. Existing data sources for clinical epidemiology: the Danish National Pathology Registry and Data Bank

    DEFF Research Database (Denmark)

    Erichsen, Rune; Lash, Timothy L; Hamilton-Dutoit, Stephen J

    2010-01-01

    of epidemiological research. We describe two recent additions to these databases: the Danish National Pathology Registry (DNPR) and its underlying national online registration database, the Danish Pathology Data Bank (DPDB). The DNPR and the DPDB contain detailed nationwide records of all pathology specimens...

  6. Database application research in real-time data access of accelerator control system

    International Nuclear Information System (INIS)

    Chen Guanghua; Chen Jianfeng; Wan Tianmin

    2012-01-01

    The control system of Shanghai Synchrotron Radiation Facility (SSRF) is a large-scale distributed real-time control system, It involves many types and large amounts of real-time data access during the operating. Database system has wide application prospects in the large-scale accelerator control system. It is the future development direction of the accelerator control system, to replace the differently dedicated data structures with the mature standardized database system. This article discusses the application feasibility of database system in accelerators based on the database interface technology, real-time data access testing, and system optimization research and to establish the foundation of the wide scale application of database system in the SSRF accelerator control system. Based on the database interface technology, real-time data access testing and system optimization research, this article will introduce the application feasibility of database system in accelerators, and lay the foundation of database system application in the SSRF accelerator control system. (authors)

  7. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months.

    Science.gov (United States)

    Beukelman, Timothy; Kimura, Yukiko; Ilowite, Norman T; Mieszkalski, Kelly; Natter, Marc D; Burrell, Grendel; Best, Brian; Jones, Jason; Schanberg, Laura E

    2017-04-17

    Herein we describe the history, design, and rationale of the new Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry and present the characteristics of patients with juvenile idiopathic arthritis (JIA) enrolled in the first 12 months of operation. The CARRA Registry began prospectively collecting data in the United States and Canada in July 2015 to evaluate the safety of therapeutic agents in persons with childhood-onset rheumatic disease, initially restricted to JIA. Secondary objectives include the evaluation of disease outcomes and their associations with medication use and other factors. Data are collected every 6 months and include clinical assessments, detailed medication use, patient-reported outcomes, and safety events. Follow-up is planned for at least 10 years for each participant and is facilitated by a telephone call center. As of July 2016, 1192 patients with JIA were enrolled in the CARRA Registry at 49 clinical sites. At enrollment, their median age was 12.4 years old and median disease duration was 2.6 years. Owing to preferential enrollment, patients with systemic JIA (13%) and with a polyarticular course (75%) were over-represented compared to patients in typical clinical practice. Approximately 49% were currently using biologic agents and ever use of oral glucocorticoids was common (47%). The CARRA Registry provides safety surveillance data to pharmaceutical companies to satisfy their regulatory requirements, and several independently-funded sub-studies that use the Registry infrastructure are underway. The new CARRA Registry successfully enrolled nearly 1200 participants with JIA in the first 12 months of its operation. Sustainable funding has been secured from multiple sources. The CARRA Registry may serve as a model for the study of other uncommon diseases.

  8. Construction and management of ARDS/sepsis registry with REDCap.

    Science.gov (United States)

    Pang, Xiaoqing; Kozlowski, Natascha; Wu, Sulong; Jiang, Mei; Huang, Yongbo; Mao, Pu; Liu, Xiaoqing; He, Weiqun; Huang, Chaoyi; Li, Yimin; Zhang, Haibo

    2014-09-01

    The study aimed to construct and manage an acute respiratory distress syndrome (ARDS)/sepsis registry that can be used for data warehousing and clinical research. The workflow methodology and software solution of research electronic data capture (REDCap) was used to construct the ARDS/sepsis registry. Clinical data from ARDS and sepsis patients registered to the intensive care unit (ICU) of our hospital formed the registry. These data were converted to the electronic case report form (eCRF) format used in REDCap by trained medical staff. Data validation, quality control, and database management were conducted to ensure data integrity. The clinical data of 67 patients registered to the ICU between June 2013 and December 2013 were analyzed. Of the 67 patients, 45 (67.2%) were classified as sepsis, 14 (20.9%) as ARDS, and eight (11.9%) as sepsis-associated ARDS. The patients' information, comprising demographic characteristics, medical history, clinical interventions, daily assessment, clinical outcome, and follow-up data, was properly managed and safely stored in the ARDS/sepsis registry. Data efficiency was guaranteed by performing data collection and data entry twice weekly and every two weeks, respectively. The ARDS/sepsis database that we constructed and manage with REDCap in the ICU can provide a solid foundation for translational research on the clinical data of interest, and a model for development of other medical registries in the future.

  9. Grantees Guide for Research Database at IDRC (English)

    International Development Research Centre (IDRC) Digital Library (Canada)

    Commercial databases conditions of use. These resources are governed by license agreements which restrict use to IDRC employees and grantees taking part in projects funded by. IDRC. It is the responsibility of each user to use these products only for individual, noncommercial use without systematically downloading ...

  10. Research and Implementation of Distributed Database HBase Monitoring System

    Directory of Open Access Journals (Sweden)

    Guo Lisi

    2017-01-01

    Full Text Available With the arrival of large data age, distributed database HBase becomes an important tool for storing data in massive data age. The normal operation of HBase database is an important guarantee to ensure the security of data storage. Therefore designing a reasonable HBase monitoring system is of great significance in practice. In this article, we introduce the solution, which contains the performance monitoring and fault alarm function module, to meet a certain operator’s demand of HBase monitoring database in their actual production projects. We designed a monitoring system which consists of a flexible and extensible monitoring agent, a monitoring server based on SSM architecture, and a concise monitoring display layer. Moreover, in order to deal with the problem that pages renders too slow in the actual operation process, we present a solution: reducing the SQL query. It has been proved that reducing SQL query can effectively improve system performance and user experience. The system work well in monitoring the status of HBase database, flexibly extending the monitoring index, and issuing a warning when a fault occurs, so that it is able to improve the working efficiency of the administrator, and ensure the smooth operation of the project.

  11. On the use of databases about research performance

    NARCIS (Netherlands)

    Rodela, Romina

    2016-01-01

    The accuracy of interdisciplinarity measurements depends on how well the data is used for this purpose and whether it can meaningfully inform about work that crosses disciplinary domains. At present, there are no ad hoc databases compiling information only and exclusively about interdisciplinary

  12. Detecting dissonance in clinical and research workflow for translational psychiatric registries.

    Science.gov (United States)

    Cofiel, Luciana; Bassi, Débora U; Ray, Ryan Kumar; Pietrobon, Ricardo; Brentani, Helena

    2013-01-01

    The interplay between the workflow for clinical tasks and research data collection is often overlooked, ultimately making it ineffective. To the best of our knowledge, no previous studies have developed standards that allow for the comparison of workflow models derived from clinical and research tasks toward the improvement of data collection processes. In this study we used the term dissonance for the occurrences where there was a discord between clinical and research workflows. We developed workflow models for a translational research study in psychiatry and the clinic where its data collection was carried out. After identifying points of dissonance between clinical and research models we derived a corresponding classification system that ultimately enabled us to re-engineer the data collection workflow. We considered (1) the number of patients approached for enrollment and (2) the number of patients enrolled in the study as indicators of efficiency in research workflow. We also recorded the number of dissonances before and after the workflow modification. We identified 22 episodes of dissonance across 6 dissonance categories: actor, communication, information, artifact, time, and space. We were able to eliminate 18 episodes of dissonance and increase the number of patients approached and enrolled in research study trough workflow modification. The classification developed in this study is useful for guiding the identification of dissonances and reveal modifications required to align the workflow of data collection and the clinical setting. The methodology described in this study can be used by researchers to standardize data collection process.

  13. Hydrometeorological Database (HMDB) for Practical Research in Ecology

    OpenAIRE

    Novakovskiy, A; Elsakov, V

    2014-01-01

    The regional HydroMeteorological DataBase (HMDB) was designed for easy access to climate data via the Internet. It contains data on various climatic parameters (temperature, precipitation, pressure, humidity, and wind strength and direction) from 190 meteorological stations in Russia and bordering countries for a period of instrumental observations of over 100 years. Open sources were used to ingest data into HMDB. An analytical block was also developed to perform the most common statistical ...

  14. United States Transuranium Registry summary report to June 30, 1974 to USAEC Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Norwood, W.D.; Newton, C.E. Jr.

    1974-06-01

    This report gives some of the highlights of the US Transuranium Registry since its inception in late 1968 together with more detailed information concerning the activities for the year ending April 30, 1974. Articles are referred to which describe autopsy studies to determine plutonium body content, performed since 1949 for the purpose of evaluating plant health safety programs. The purpose of the Registry is described and its administrative direction is discussed. The Registry is a data collecting agency whose success depends upon how well the data is collected by the cooperating companies is described

  15. The value of trauma registries.

    Science.gov (United States)

    Moore, Lynne; Clark, David E

    2008-06-01

    Trauma registries are databases that document acute care delivered to patients hospitalised with injuries. They are designed to provide information that can be used to improve the efficiency and quality of trauma care. Indeed, the combination of trauma registry data at regional or national levels can produce very large databases that allow unprecedented opportunities for the evaluation of patient outcomes and inter-hospital comparisons. However, the creation and upkeep of trauma registries requires a substantial investment of money, time and effort, data quality is an important challenge and aggregated trauma data sets rarely represent a population-based sample of trauma. In addition, trauma hospitalisations are already routinely documented in administrative hospital discharge databases. The present review aims to provide evidence that trauma registry data can be used to improve the care dispensed to victims of injury in ways that could not be achieved with information from administrative databases alone. In addition, we will define the structure and purpose of contemporary trauma registries, acknowledge their limitations, and discuss possible ways to make them more useful.

  16. USDA food and nutrient databases provide the infrastructure for food and nutrition research, policy, and practice.

    Science.gov (United States)

    Ahuja, Jaspreet K C; Moshfegh, Alanna J; Holden, Joanne M; Harris, Ellen

    2013-02-01

    The USDA food and nutrient databases provide the basic infrastructure for food and nutrition research, nutrition monitoring, policy, and dietary practice. They have had a long history that goes back to 1892 and are unique, as they are the only databases available in the public domain that perform these functions. There are 4 major food and nutrient databases released by the Beltsville Human Nutrition Research Center (BHNRC), part of the USDA's Agricultural Research Service. These include the USDA National Nutrient Database for Standard Reference, the Dietary Supplement Ingredient Database, the Food and Nutrient Database for Dietary Studies, and the USDA Food Patterns Equivalents Database. The users of the databases are diverse and include federal agencies, the food industry, health professionals, restaurants, software application developers, academia and research organizations, international organizations, and foreign governments, among others. Many of these users have partnered with BHNRC to leverage funds and/or scientific expertise to work toward common goals. The use of the databases has increased tremendously in the past few years, especially the breadth of uses. These new uses of the data are bound to increase with the increased availability of technology and public health emphasis on diet-related measures such as sodium and energy reduction. Hence, continued improvement of the databases is important, so that they can better address these challenges and provide reliable and accurate data.

  17. Standardized cardiovascular data for clinical research, registries, and patient care: a report from the Data Standards Workgroup of the National Cardiovascular Research Infrastructure project.

    Science.gov (United States)

    Anderson, H Vernon; Weintraub, William S; Radford, Martha J; Kremers, Mark S; Roe, Matthew T; Shaw, Richard E; Pinchotti, Dana M; Tcheng, James E

    2013-05-07

    Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nonetheless, these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the 2 major technical standards organizations in health care, the Clinical Data Interchange Standards Consortium and Health Level Seven International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care

  18. The Camden & Islington Research Database: Using electronic mental health records for research.

    Science.gov (United States)

    Werbeloff, Nomi; Osborn, David P J; Patel, Rashmi; Taylor, Matthew; Stewart, Robert; Broadbent, Matthew; Hayes, Joseph F

    2018-01-01

    Electronic health records (EHRs) are widely used in mental health services. Case registers using EHRs from secondary mental healthcare have the potential to deliver large-scale projects evaluating mental health outcomes in real-world clinical populations. We describe the Camden and Islington NHS Foundation Trust (C&I) Research Database which uses the Clinical Record Interactive Search (CRIS) tool to extract and de-identify routinely collected clinical information from a large UK provider of secondary mental healthcare, and demonstrate its capabilities to answer a clinical research question regarding time to diagnosis and treatment of bipolar disorder. The C&I Research Database contains records from 108,168 mental health patients, of which 23,538 were receiving active care. The characteristics of the patient population are compared to those of the catchment area, of London, and of England as a whole. The median time to diagnosis of bipolar disorder was 76 days (interquartile range: 17-391) and median time to treatment was 37 days (interquartile range: 5-194). Compulsory admission under the UK Mental Health Act was associated with shorter intervals to diagnosis and treatment. Prior diagnoses of other psychiatric disorders were associated with longer intervals to diagnosis, though prior diagnoses of schizophrenia and related disorders were associated with decreased time to treatment. The CRIS tool, developed by the South London and Maudsley NHS Foundation Trust (SLaM) Biomedical Research Centre (BRC), functioned very well at C&I. It is reassuring that data from different organizations deliver similar results, and that applications developed in one Trust can then be successfully deployed in another. The information can be retrieved in a quicker and more efficient fashion than more traditional methods of health research. The findings support the secondary use of EHRs for large-scale mental health research in naturalistic samples and settings investigated across large

  19. United States transuranium and uranium registries - 25 years of growth, research, and service. Annual report, April 1992--September 1993

    International Nuclear Information System (INIS)

    Kathren, R.L.; Harwick, L.A.; Toohey, R.E.; Russell, J.J.; Filipy, R.E.; Dietert, S.E.; Hunacek, M.M.; Hall, C.A.

    1994-01-01

    The Registries originated in 1968 as the National Plutonium Registry with the name changed to the United States Transuranium Registry the following year to reflect a broader concern with the heavier actinides as well. Initially, the scientific effort of the USTR was directed towards study of the distribution and dose of plutonium and americium in occupationally exposed persons, and to assessment of the effects of exposure to the transuranium elements on health. This latter role was reassessed during the 1970's when it was recognized that the biased cohort of the USTR was inappropriate for epidemiologic analysis. In 1978, the administratively separate but parallel United States Uranium Registry was created to carry out similar work among persons exposed to uranium and its decay products. A seven member scientific advisory committee provided guidance and scientific oversight. In 1992, the two Registries were administratively combined and transferred from the purview of a Department of Energy contractor to Washington State University under the provisions of a grant. Scientific results for the first twenty-five years of the Registries are summarized, including the 1985 publication of the analysis of the first whole body donor. Current scientific work in progress is summarized along with administrative activities for the period

  20. United States transuranium and uranium registries - 25 years of growth, research, and service. Annual report, April 1992--September 1993

    Energy Technology Data Exchange (ETDEWEB)

    Kathren, R.L.; Harwick, L.A.; Toohey, R.E.; Russell, J.J.; Filipy, R.E.; Dietert, S.E.; Hunacek, M.M.; Hall, C.A.

    1994-10-01

    The Registries originated in 1968 as the National Plutonium Registry with the name changed to the United States Transuranium Registry the following year to reflect a broader concern with the heavier actinides as well. Initially, the scientific effort of the USTR was directed towards study of the distribution and dose of plutonium and americium in occupationally exposed persons, and to assessment of the effects of exposure to the transuranium elements on health. This latter role was reassessed during the 1970`s when it was recognized that the biased cohort of the USTR was inappropriate for epidemiologic analysis. In 1978, the administratively separate but parallel United States Uranium Registry was created to carry out similar work among persons exposed to uranium and its decay products. A seven member scientific advisory committee provided guidance and scientific oversight. In 1992, the two Registries were administratively combined and transferred from the purview of a Department of Energy contractor to Washington State University under the provisions of a grant. Scientific results for the first twenty-five years of the Registries are summarized, including the 1985 publication of the analysis of the first whole body donor. Current scientific work in progress is summarized along with administrative activities for the period.

  1. The Danish Testicular Cancer database

    DEFF Research Database (Denmark)

    Daugaard, Gedske; Kier, Maria Gry Gundgaard; Bandak, Mikkel

    2016-01-01

    AIM: The nationwide Danish Testicular Cancer database consists of a retrospective research database (DaTeCa database) and a prospective clinical database (Danish Multidisciplinary Cancer Group [DMCG] DaTeCa database). The aim is to improve the quality of care for patients with testicular cancer (TC......) in Denmark, that is, by identifying risk factors for relapse, toxicity related to treatment, and focusing on late effects. STUDY POPULATION: All Danish male patients with a histologically verified germ cell cancer diagnosis in the Danish Pathology Registry are included in the DaTeCa databases. Data...... collection has been performed from 1984 to 2007 and from 2013 onward, respectively. MAIN VARIABLES AND DESCRIPTIVE DATA: The retrospective DaTeCa database contains detailed information with more than 300 variables related to histology, stage, treatment, relapses, pathology, tumor markers, kidney function...

  2. The Danish Heart Registry

    DEFF Research Database (Denmark)

    Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted

    2016-01-01

    AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...

  3. The validity and reliability of the diagnosis of hyperkinetic disorders in the Danish Psychiatric Central Research Registry

    DEFF Research Database (Denmark)

    Jensen, Christina Mohr; Vinkel Koch, S; Lauritsen, Marlene Briciet

    2016-01-01

    were used to validate the diagnosis. Patient files were systematically scored for the presence of ICD-10 criteria for HD and oppositional defiant disorder/conduct disorder (ODD/CD; F91). Further to this, an inter-rater reliability study was also conducted, whereby two experienced child and adolescent......OBJECTIVE: To validate the diagnosis of hyperkinetic disorders (HD) in the Danish Psychiatric Central Research Registry (DPCRR) for children and adolescents aged 4 to 15 given in the years 1995 to 2005. METHOD: From a total of 4568 participants, a representative random subsample of n=387 patients...... it was not possible to reach a conclusion for 5.1% of the cases, 3.8% of the diagnoses were registration errors, and in 4.3% of the files the diagnosis had to be rejected. Inter-rater agreement was high (κ=0.83, z=10.9, Pvalidity of hyperkinetic disorders, unspecified (F90.9) was lower and comorbid CD...

  4. Challenges of implementation and implementation research: Learning from an intervention study designed to improve tumor registry reporting

    Directory of Open Access Journals (Sweden)

    Ann Scheck McAlearney

    2016-08-01

    Full Text Available Objectives: Implementation of interventions designed to improve the quality of medical care often proceeds differently from what is planned. Improving existing conceptual models to better understand the sources of these differences can help future projects avoid these pitfalls and achieve desired effectiveness. To inform an adaptation of an existing theoretical model, we examined unanticipated changes that occurred in an intervention designed to improve reporting of adjuvant therapies for breast cancer patients at a large, urban academic medical center. Methods: Guided by the complex innovation implementation conceptual framework, our study team observed and evaluated the implementation of an intervention designed to improve reporting to a tumor registry. Findings were assessed against the conceptual framework to identify boundary conditions and modifications that could improve implementation effectiveness. Results: The intervention successfully increased identification of the managing medical oncologist and treatment reporting. During implementation, however, unexpected external challenges including hospital acquisitions of community practices and practices’ responses to government incentives to purchase electronic medical record systems led to unanticipated changes and associated threats to implementation. We present a revised conceptual model that incorporates the sources of these unanticipated challenges. Conclusion: This report of our experience highlights the importance of monitoring implementation over time and accounting for changes that affect both implementation and measurement of intervention impact. In this article, we use our study to examine the challenges of implementation research in health care, and our experience can help future implementation efforts.

  5. The Danish Collaborative Bacteraemia Network (DACOBAN) database

    DEFF Research Database (Denmark)

    Gradel, Kim Oren; Schønheyder, Henrik Carl; Arpi, Magnus

    2014-01-01

    % of the Danish population). The database also includes data on comorbidity from the Danish National Patient Registry, vital status from the Danish Civil Registration System, and clinical data on 31% of nonselected records in the database. Use of the unique civil registration number given to all Danish residents......The Danish Collaborative Bacteraemia Network (DACOBAN) research database includes microbiological data obtained from positive blood cultures from a geographically and demographically well-defined population serviced by three clinical microbiology departments (1.7 million residents, 32...... enables linkage to additional registries for specific research projects. The DACOBAN database is continuously updated, and it currently comprises 39,292 patients with 49,951 bacteremic episodes from 2000 through 2011. The database is part of an international network of population-based bacteremia...

  6. Development of a computational database for application in Probabilistic Safety Analysis of nuclear research reactors

    International Nuclear Information System (INIS)

    Macedo, Vagner dos Santos

    2016-01-01

    The objective of this work is to present the computational database that was developed to store technical information and process data on component operation, failure and maintenance for the nuclear research reactors located at the Nuclear and Energy Research Institute (Instituto de Pesquisas Energéticas e Nucleares, IPEN), in São Paulo, Brazil. Data extracted from this database may be applied in the Probabilistic Safety Analysis of these research reactors or in less complex quantitative assessments related to safety, reliability, availability and maintainability of these facilities. This database may be accessed by users of the corporate network, named IPEN intranet. Professionals who require the access to the database must be duly registered by the system administrator, so that they will be able to consult and handle the information. The logical model adopted to represent the database structure is an entity-relationship model, which is in accordance with the protocols installed in IPEN intranet. The open-source relational database management system called MySQL, which is based on the Structured Query Language (SQL), was used in the development of this work. The PHP programming language was adopted to allow users to handle the database. Finally, the main result of this work was the creation a web application for the component reliability database named PSADB, specifically developed for the research reactors of IPEN; furthermore, the database management system provides relevant information efficiently. (author)

  7. Romanian contribution to research infrastructure database for EPOS

    Science.gov (United States)

    Ionescu, Constantin; Craiu, Andreea; Tataru, Dragos; Balan, Stefan; Muntean, Alexandra; Nastase, Eduard; Oaie, Gheorghe; Asimopolos, Laurentiu; Panaiotu, Cristian

    2014-05-01

    European Plate Observation System - EPOS is a long-term plan to facilitate integrated use of data, models and facilities from mainly distributed existing, but also new, research infrastructures for solid Earth Science. In EPOS Preparatory Phase were integrated the national Research Infrastructures at pan European level in order to create the EPOS distributed research infrastructures, structure in which, at the present time, Romania participates by means of the earth science research infrastructures of the national interest declared on the National Roadmap. The mission of EPOS is to build an efficient and comprehensive multidisciplinary research platform for solid Earth Sciences in Europe and to allow the scientific community to study the same phenomena from different points of view, in different time periods and spatial scales (laboratory and field experiments). At national scale, research and monitoring infrastructures have gathered a vast amount of geological and geophysical data, which have been used by research networks to underpin our understanding of the Earth. EPOS promotes the creation of comprehensive national and regional consortia, as well as the organization of collective actions. To serve the EPOS goals, in Romania a group of National Research Institutes, together with their infrastructures, gathered in an EPOS National Consortium, as follows: 1. National Institute for Earth Physics - Seismic, strong motion, GPS and Geomagnetic network and Experimental Laboratory; 2. National Institute of Marine Geology and Geoecology - Marine Research infrastructure and Euxinus integrated regional Black Sea observation and early-warning system; 3. Geological Institute of Romania - Surlari National Geomagnetic Observatory and National lithoteque (the latter as part of the National Museum of Geology) 4. University of Bucharest - Paleomagnetic Laboratory After national dissemination of EPOS initiative other Research Institutes and companies from the potential

  8. Research in Mobile Database Query Optimization and Processing

    Directory of Open Access Journals (Sweden)

    Agustinus Borgy Waluyo

    2005-01-01

    Full Text Available The emergence of mobile computing provides the ability to access information at any time and place. However, as mobile computing environments have inherent factors like power, storage, asymmetric communication cost, and bandwidth limitations, efficient query processing and minimum query response time are definitely of great interest. This survey groups a variety of query optimization and processing mechanisms in mobile databases into two main categories, namely: (i query processing strategy, and (ii caching management strategy. Query processing includes both pull and push operations (broadcast mechanisms. We further classify push operation into on-demand broadcast and periodic broadcast. Push operation (on-demand broadcast relates to designing techniques that enable the server to accommodate multiple requests so that the request can be processed efficiently. Push operation (periodic broadcast corresponds to data dissemination strategies. In this scheme, several techniques to improve the query performance by broadcasting data to a population of mobile users are described. A caching management strategy defines a number of methods for maintaining cached data items in clients' local storage. This strategy considers critical caching issues such as caching granularity, caching coherence strategy and caching replacement policy. Finally, this survey concludes with several open issues relating to mobile query optimization and processing strategy.

  9. NaKnowBaseTM: The EPA Nanomaterials Research Database

    Science.gov (United States)

    The ability to predict the environmental and health implications of engineered nanomaterials is an important research priority due to the exponential rate at which nanotechnology is being incorporated into consumer, industrial and biomedical applications. To address this need and...

  10. Landslide databases for applied landslide impact research: the example of the landslide database for the Federal Republic of Germany

    Science.gov (United States)

    Damm, Bodo; Klose, Martin

    2014-05-01

    This contribution presents an initiative to develop a national landslide database for the Federal Republic of Germany. It highlights structure and contents of the landslide database and outlines its major data sources and the strategy of information retrieval. Furthermore, the contribution exemplifies the database potentials in applied landslide impact research, including statistics of landslide damage, repair, and mitigation. The landslide database offers due to systematic regional data compilation a differentiated data pool of more than 5,000 data sets and over 13,000 single data files. It dates back to 1137 AD and covers landslide sites throughout Germany. In seven main data blocks, the landslide database stores besides information on landslide types, dimensions, and processes, additional data on soil and bedrock properties, geomorphometry, and climatic or other major triggering events. A peculiarity of this landslide database is its storage of data sets on land use effects, damage impacts, hazard mitigation, and landslide costs. Compilation of landslide data is based on a two-tier strategy of data collection. The first step of information retrieval includes systematic web content mining and exploration of online archives of emergency agencies, fire and police departments, and news organizations. Using web and RSS feeds and soon also a focused web crawler, this enables effective nationwide data collection for recent landslides. On the basis of this information, in-depth data mining is performed to deepen and diversify the data pool in key landslide areas. This enables to gather detailed landslide information from, amongst others, agency records, geotechnical reports, climate statistics, maps, and satellite imagery. Landslide data is extracted from these information sources using a mix of methods, including statistical techniques, imagery analysis, and qualitative text interpretation. The landslide database is currently migrated to a spatial database system

  11. The Use of a Relational Database in Qualitative Research on Educational Computing.

    Science.gov (United States)

    Winer, Laura R.; Carriere, Mario

    1990-01-01

    Discusses the use of a relational database as a data management and analysis tool for nonexperimental qualitative research, and describes the use of the Reflex Plus database in the Vitrine 2001 project in Quebec to study computer-based learning environments. Information systems are also discussed, and the use of a conceptual model is explained.…

  12. Development of a Framework for Multimodal Research: Creation of a Bibliographic Database

    National Research Council Canada - National Science Library

    Coovert, Michael D; Gray, Ashley A; Elliott, Linda R; Redden, Elizabeth S

    2007-01-01

    .... The results of the overall effort, the multimodal framework and article tracking sheet, bibliographic database, and searchable multimodal database make substantial and valuable contributions to the accumulation and interpretation of multimodal research. References collected in this effort are listed in the appendix.

  13. MonetDB: Two Decades of Research in Column-oriented Database Architectures

    NARCIS (Netherlands)

    Idreos, S.; Groffen, F.; Nes, N.; Manegold, S.; Mullender, S.; Kersten, M.

    2012-01-01

    MonetDB is a state-of-the-art open-source column-store database management system targeting applications in need for analytics over large collections of data. MonetDB is actively used nowadays in health care, in telecommunications as well as in scientific databases and in data management research,

  14. USING THE INTERNATIONAL SCIENTOMETRIC DATABASES OF OPEN ACCESS IN SCIENTIFIC RESEARCH

    Directory of Open Access Journals (Sweden)

    O. Galchevska

    2015-05-01

    Full Text Available In the article the problem of the use of international scientometric databases in research activities as web-oriented resources and services that are the means of publication and dissemination of research results is considered. Selection criteria of scientometric platforms of open access in conducting scientific researches (coverage Ukrainian scientific periodicals and publications, data accuracy, general characteristics of international scientometrics database, technical, functional characteristics and their indexes are emphasized. The review of the most popular scientometric databases of open access Google Scholar, Russian Scientific Citation Index (RSCI, Scholarometer, Index Copernicus (IC, Microsoft Academic Search is made. Advantages of usage of International Scientometrics database Google Scholar in conducting scientific researches and prospects of research that are in the separation of cloud information and analytical services of the system are determined.

  15. Development of a marketing strategy for the Coal Research Establishment`s emissions monitoring database

    Energy Technology Data Exchange (ETDEWEB)

    Beer, A.D.; Hughes, I.S.C. [British Coal Corporation, Stoke Orchard (United Kingdom). Coal Research Establishment

    1995-06-01

    A summary is presented of the results of work conducted by the UK`s Coal Research Establishment (CRE) between April 1994 and December 1994 following the completion of a project on the utilisation and publication of an emissions monitoring database. The database contains emissions data for most UK combustion plant, gathered over the past 10 years. The aim of this further work was to identify the strengths and weaknesses of CRE`s database, to investigate potential additional sources of data, and to develop a strategy for marketing the information contained within the database to interested parties. 3 figs.

  16. The Danish National Chronic Lymphocytic Leukemia Registry

    DEFF Research Database (Denmark)

    da Cunha-Bang, Caspar; Geisler, Christian Hartmann; Enggaard, Lisbeth

    2016-01-01

    AIM: In 2008, the Danish National Chronic Lymphocytic Leukemia Registry was founded within the Danish National Hematology Database. The primary aim of the registry is to assure quality of diagnosis and care of patients with chronic lymphocytic leukemia (CLL) in Denmark. Secondarily, to evaluate...

  17. The evaluation of complex clinical trial protocols: resources available to research ethics committees and the use of clinical trial registries--a case study.

    Science.gov (United States)

    Homedes, Núria; Ugalde, Antonio

    2015-06-01

    To assess the potential role of clinical trial (CT) registries and other resources available to research ethics committees (RECs) in the evaluation of complex CT protocols in low-income and middle-income countries. Using a case study approach, the authors examined the decision-making process of a REC in Argentina and its efforts to use available resources to decide on a complex protocol. We also analysed the information in the USA and other CT registries and consulted 24 CT experts in seven countries. Information requested by the Argentinean REC from other national RECs and ethics' experts was not useful to verify the adequacy of the REC's decision whether or not to approve the CT. The responses from the national regulatory agency and the sponsor were not helpful either. The identification of international resources that could assist was beyond the REC's capability. The information in the USA and other CT registries is limited, and at times misleading; and its accuracy is not verified by register keepers. RECs have limited access to experts and institutions that could assist them in their deliberations. Sponsors do not always answer RECs' request for information to properly conduct the ethical and methodological assessment of CT protocols. The usefulness of the CT registries is curtailed by the lack of appropriate codes and by data errors. Information about reasons for rejection, withdrawal or suspension of the trial should be included in the registries. Establishing formal channels of communication among national and foreign RECs and with independent international reference centres could strengthen the ethical review of CT protocols. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  18. A Relational Database of WHO Mortality Data Prepared to Facilitate Global Mortality Research

    Directory of Open Access Journals (Sweden)

    Albert de Roos

    2015-09-01

    Full Text Available Detailed world mortality data such as collected by the World Health Organization gives a wealth of information about causes of death worldwide over a time span of 60 year. However, the raw mortality data in text format as provided by the WHO is not directly suitable for systematic research and data mining. In this Data Paper, a relational database is presented that is created from the raw WHO mortality data set and includes mortality rates, an ICD-code table and country reference data. This enriched database, as a corpus of global mortality data, can be readily imported in relational databases but can also function as the data source for other types of databases. The use of this database can therefore greatly facilitate global epidemiological research that may provide new clues to genetic or environmental factors in the origins of diseases.

  19. A meta-database comparison from various European Research and Monitoring Networks dedicated to forest sites

    Czech Academy of Sciences Publication Activity Database

    Danielewska, A.; Clarke, N.; Olejnik, Janusz; Hansen, K.; de Vries, W.; Lundin, L.; Tuovinen, J-P.; Fischer, R.; Urbaniak, M.; Paoletti, E.

    2013-01-01

    Roč. 6, JAN 2013 (2013), s. 1-9 ISSN 1971-7458 Institutional support: RVO:67179843 Keywords : Research and Monitoring Network * Meta- database * Forest * Monitoring Subject RIV: EH - Ecology, Behaviour Impact factor: 1.150, year: 2013

  20. Review of U.S. registries for psoriasis.

    Science.gov (United States)

    Amin, Mina; No, Daniel J; Wu, Jashin J

    2017-12-01

    Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

  1. Security and Health Research Databases: The Stakeholders and Questions to Be Addressed

    OpenAIRE

    Stewart, Sara

    2006-01-01

    Health research database security issues abound. Issues include subject confidentiality, data ownership, data integrity and data accessibility. There are also various stakeholders in database security. Each of these stakeholders has a different set of concerns and responsibilities when dealing with security issues. There is an obvious need for training in security issues, so that these issues may be addressed and health research will move on without added obstacles based on misunderstanding s...

  2. Security and health research databases: the stakeholders and questions to be addressed.

    Science.gov (United States)

    Stewart, Sara

    2006-01-01

    Health research database security issues abound. Issues include subject confidentiality, data ownership, data integrity and data accessibility. There are also various stakeholders in database security. Each of these stakeholders has a different set of concerns and responsibilities when dealing with security issues. There is an obvious need for training in security issues, so that these issues may be addressed and health research will move on without added obstacles based on misunderstanding security methods and technologies.

  3. eRegistries: Electronic registries for maternal and child health.

    Science.gov (United States)

    Frøen, J Frederik; Myhre, Sonja L; Frost, Michael J; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid K; French, Steve; Jani, Jagrati V; Kaye, Jane; Lewis, John; Lunde, Ane; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J

    2016-01-19

    information. More mature country capacity reflected by published health registry based research is emerging in settings reaching regional or national scale, increasingly with electronic solutions. 66 scientific publications were identified based on 32 registry systems in 23 countries over a period of 10 years; this reflects a challenging experience and capacity gap for delivering sustainable high quality registries. Registries are being developed and used in many high burden countries, but their potential benefits are far from realized as few countries have fully transitioned from paper-based health information to integrated electronic backbone systems. Free tools and frameworks exist to facilitate progress in health information for women and children.

  4. Standardizing terminology and definitions of medication adherence and persistence in research employing electronic databases.

    Science.gov (United States)

    Raebel, Marsha A; Schmittdiel, Julie; Karter, Andrew J; Konieczny, Jennifer L; Steiner, John F

    2013-08-01

    To propose a unifying set of definitions for prescription adherence research utilizing electronic health record prescribing databases, prescription dispensing databases, and pharmacy claims databases and to provide a conceptual framework to operationalize these definitions consistently across studies. We reviewed recent literature to identify definitions in electronic database studies of prescription-filling patterns for chronic oral medications. We then develop a conceptual model and propose standardized terminology and definitions to describe prescription-filling behavior from electronic databases. The conceptual model we propose defines 2 separate constructs: medication adherence and persistence. We define primary and secondary adherence as distinct subtypes of adherence. Metrics for estimating secondary adherence are discussed and critiqued, including a newer metric (New Prescription Medication Gap measure) that enables estimation of both primary and secondary adherence. Terminology currently used in prescription adherence research employing electronic databases lacks consistency. We propose a clear, consistent, broadly applicable conceptual model and terminology for such studies. The model and definitions facilitate research utilizing electronic medication prescribing, dispensing, and/or claims databases and encompasses the entire continuum of prescription-filling behavior. Employing conceptually clear and consistent terminology to define medication adherence and persistence will facilitate future comparative effectiveness research and meta-analytic studies that utilize electronic prescription and dispensing records.

  5. United States Transuranium Registry annual report October 1, 1975-October 1, 1976 to ERDA Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Norwood, W.D.; Newton, C.E. Jr.

    1976-12-01

    The US Transuranium Registry is a center for collecting precise information about the occupational effects of transuranic elements on man. To date 13,943 past and present transuranium workers have been tabulated. Health, mortality, causes of death and transuranic organ depositions are being studied. Bryce D. Breitenstein, Jr., M.D. was named Director of the Registry in July 1976. The Los Alamos Scientific Laboratory is directing the epidemiological portion of a plutonium worker health study with George Voelz, M.D. and Louis Hempelmann, M.D. serving as principal investigators. The USTR is affiliated with this study. USTR statistical data shows progressive acquisition of information for 1975 and 1976. ERDA contractor and NRC licensee activities at participating sited are discussed. Preparation of the input format to record and store USTR data has been completed and is ready for trial operation. USTR educational and informational activities were extensive and varied. Many queries arose from the use of published Registry autopsy data by Ralph Nader's associate Dr. S. Wolfe. There was continued cooperation with representatives of the British Atomic Energy Authority in their efforts to develop a plutonium registry

  6. Improving quality of breast cancer surgery through development of a national breast cancer surgical outcomes (BRCASO research database

    Directory of Open Access Journals (Sweden)

    Aiello Bowles Erin J

    2012-04-01

    Full Text Available Abstract Background Common measures of surgical quality are 30-day morbidity and mortality, which poorly describe breast cancer surgical quality with extremely low morbidity and mortality rates. Several national quality programs have collected additional surgical quality measures; however, program participation is voluntary and results may not be generalizable to all surgeons. We developed the Breast Cancer Surgical Outcomes (BRCASO database to capture meaningful breast cancer surgical quality measures among a non-voluntary sample, and study variation in these measures across providers, facilities, and health plans. This paper describes our study protocol, data collection methods, and summarizes the strengths and limitations of these data. Methods We included 4524 women ≥18 years diagnosed with breast cancer between 2003-2008. All women with initial breast cancer surgery performed by a surgeon employed at the University of Vermont or three Cancer Research Network (CRN health plans were eligible for inclusion. From the CRN institutions, we collected electronic administrative data including tumor registry information, Current Procedure Terminology codes for breast cancer surgeries, surgeons, surgical facilities, and patient demographics. We supplemented electronic data with medical record abstraction to collect additional pathology and surgery detail. All data were manually abstracted at the University of Vermont. Results The CRN institutions pre-filled 30% (22 out of 72 of elements using electronic data. The remaining elements, including detailed pathology margin status and breast and lymph node surgeries, required chart abstraction. The mean age was 61 years (range 20-98 years; 70% of women were diagnosed with invasive ductal carcinoma, 20% with ductal carcinoma in situ, and 10% with invasive lobular carcinoma. Conclusions The BRCASO database is one of the largest, multi-site research resources of meaningful breast cancer surgical quality data

  7. Increasing number of fractured ribs is not predictive of the severity of splenic injury following blunt trauma: an analysis of a National Trauma Registry database.

    Science.gov (United States)

    Boris, Kessel; Forat, Swaid; Itamar, Ashkenazi; Oded, Olsha; Kobi, Peleg; Adi, Givon; Igor, Jeroukhimov; Ricardo, Alfici

    2014-05-01

    Association between rib fractures and incidence of abdominal solid organs injury is well described. However, the correlation between the number of fractured ribs and severity of splenic injury is not clear. The purpose of this study was to assess whether an increasing number of rib fractures predicts the severity of splenic injury in blunt trauma patients. A retrospective cohort study involving blunt trauma patients with concomitant splenic injuries and rib fractures, between the years 1998 and 2012, registered in the Israeli National Trauma Registry. Of 321,618 patients with blunt mechanism of trauma, 57,130 had torso injuries, and of these 14,651 patients sustained rib fractures, and 3691 patients suffered from splenic injury. Concomitant splenic injury occurred in 1326 of the patients with rib fractures (9.1%), as compared to 2365 patients sustaining splenic injury without rib fractures (5.6%). The incidence of splenic injury among patients sustaining 5 or more rib fractures was significantly higher compared to patients suffering from 1 to 4 rib fractures. Among patients with splenic injury, the tendency to sustain associated rib fractures increased steadily with age. Patients with concomitant rib fractures had higher Injury Severity Score (ISS), but similar mortality rates, compared to patients with splenic injury without rib fractures. Among patients with concomitant rib fractures and splenic injury, there was no relation between the number of fractured ribs and the severity of splenic injury, neither as a whole group, nor after stratification according to the mechanism of injury. Although the presence of rib fractures increases the probability of splenic injury in blunt torso trauma, there is no relation between the number of fractured ribs and splenic injury severity. Copyright © 2014 Elsevier Ltd. All rights reserved.

  8. The Brazilian Twin Registry.

    Science.gov (United States)

    Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F

    2016-12-01

    The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.

  9. Towards a national trauma registry for the United Arab Emirates

    Directory of Open Access Journals (Sweden)

    Barka Ezedin

    2010-07-01

    Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

  10. Converged Registries Solution (CRS)

    Data.gov (United States)

    Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...

  11. The Danish Neuro-Oncology Registry

    DEFF Research Database (Denmark)

    Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J

    2016-01-01

    BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...

  12. The Danish Lung Cancer Registry

    DEFF Research Database (Denmark)

    Jakobsen, Erik; Rasmussen, Torben Riis

    2016-01-01

    AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...

  13. The Molecular Registry of Pituitary Adenomas (REMAH): A bet of Spanish Endocrinology for the future of individualized medicine and translational research.

    Science.gov (United States)

    Luque, Raúl M; Ibáñez-Costa, Alejandro; Sánchez-Tejada, Laura; Rivero-Cortés, Esther; Robledo, Mercedes; Madrazo-Atutxa, Ainara; Mora, Mireia; Álvarez, Clara V; Lucas-Morante, Tomás; Álvarez-Escolá, Cristina; Fajardo, Carmen; Castaño, Luis; Gaztambide, Sonia; Venegas-Moreno, Eva; Soto-Moreno, Alfonso; Gálvez, María Ángeles; Salvador, Javier; Valassi, Elena; Webb, Susan M; Picó, Antonio; Puig-Domingo, Manel; Gilabert, Montserrat; Bernabéu, Ignacio; Marazuela, Mónica; Leal-Cerro, Alfonso; Castaño, Justo P

    2016-01-01

    Pituitary adenomas are uncommon, difficult to diagnose tumors whose heterogeneity and low incidence complicate large-scale studies. The Molecular Registry of Pituitary Adenomas (REMAH) was promoted by the Andalusian Society of Endocrinology and Nutrition (SAEN) in 2008 as a cooperative clinical-basic multicenter strategy aimed at improving diagnosis and treatment of pituitary adenomas by combining clinical, pathological, and molecular information. In 2010, the Spanish Society of Endocrinology and Nutrition (SEEN) extended this project to national level and established 6 nodes with common protocols and methods for sample and clinical data collection, molecular analysis, and data recording in a common registry (www.remahnacional.com). The registry combines clinical data with molecular phenotyping of the resected pituitary adenoma using quantitative real-time PCR of expression of 26 genes: Pituitary hormones (GH-PRL-LH-FSH-PRL-ACTH-CGA), receptors (somatostatin, dopamine, GHRH, GnRH, CRH, arginine-vasopressin, ghrelin), other markers (Ki67, PTTG1), and control genes. Until 2015, molecular information has been collected from 704 adenomas, out of 1179 patients registered. This strategy allows for comparative and relational analysis between the molecular profile of the different types of adenoma and the clinical phenotype of patients, which may provide a better understanding of the condition and potentially help in treatment selection. The REMAH is therefore a unique multicenter, interdisciplinary network founded on a shared database that provides a far-reaching translational approach for management of pituitary adenomas, and paves the way for the conduct of combined clinical-basic innovative studies on large patient samples. Copyright © 2016 SEEN. Published by Elsevier España, S.L.U. All rights reserved.

  14. Association between body mass index and outcomes after percutaneous coronary intervention in multiethnic South East Asian population: a retrospective analysis of the Malaysian National Cardiovascular Disease Database-Percutaneous Coronary Intervention (NCVD-PCI) registry.

    Science.gov (United States)

    Azhari, Zaid; Ismail, Muhammad Dzafir; Zuhdi, Ahmad Syadi Mahmood; Md Sari, Norashikin; Zainal Abidin, Imran; Wan Ahmad, Wan Azman

    2017-11-09

    To examine the relationship between body mass index (BMI) and outcomes after percutaneous coronary intervention (PCI) in a multiethnic South East Asian population. Fifteen participating cardiology centres contributed to the Malaysian National Cardiovascular Disease Database-Percutaneous Coronary Intervention (NCVD-PCI) registry. 28 742 patients from the NCVD-PCI registry who had their first PCI between January 2007 and December 2014 were included. Those without their BMI recorded or BMI 70 kg/m 2 were excluded. In-hospital death, major adverse cardiovascular events (MACEs), vascular complications between different BMI groups were examined. Multivariable-adjusted HRs for 1-year mortality after PCI among the BMI groups were also calculated. The patients were divided into four groups; underweight (BMI PCI. Multivariable Cox proportional hazard regression analysis showed that compared with normal BMI group the underweight group had a non-significant difference (HR 1.02, p=0.952), while the overweight group had significantly lower risk of 1-year mortality (HR 0.71, p=0.005). The obese group also showed lower HR but this was non-significant (HR 0.78, p=0.056). Using Asian-specific BMI cut-off points, the overweight group in our study population was independently associated with lower risk of 1-year mortality after PCI compared with the normal BMI group. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  15. Databases and coordinated research projects at the IAEA on atomic processes in plasmas

    Energy Technology Data Exchange (ETDEWEB)

    Braams, Bastiaan J.; Chung, Hyun-Kyung [Nuclear Data Section, NAPC Division, International Atomic Energy Agency P. O. Box 100, Vienna International Centre, AT-1400 Vienna (Austria)

    2012-05-25

    The Atomic and Molecular Data Unit at the IAEA works with a network of national data centres to encourage and coordinate production and dissemination of fundamental data for atomic, molecular and plasma-material interaction (A+M/PMI) processes that are relevant to the realization of fusion energy. The Unit maintains numerical and bibliographical databases and has started a Wiki-style knowledge base. The Unit also contributes to A+M database interface standards and provides a search engine that offers a common interface to multiple numerical A+M/PMI databases. Coordinated Research Projects (CRPs) bring together fusion energy researchers and atomic, molecular and surface physicists for joint work towards the development of new data and new methods. The databases and current CRPs on A+M/PMI processes are briefly described here.

  16. Databases and coordinated research projects at the IAEA on atomic processes in plasmas

    Science.gov (United States)

    Braams, Bastiaan J.; Chung, Hyun-Kyung

    2012-05-01

    The Atomic and Molecular Data Unit at the IAEA works with a network of national data centres to encourage and coordinate production and dissemination of fundamental data for atomic, molecular and plasma-material interaction (A+M/PMI) processes that are relevant to the realization of fusion energy. The Unit maintains numerical and bibliographical databases and has started a Wiki-style knowledge base. The Unit also contributes to A+M database interface standards and provides a search engine that offers a common interface to multiple numerical A+M/PMI databases. Coordinated Research Projects (CRPs) bring together fusion energy researchers and atomic, molecular and surface physicists for joint work towards the development of new data and new methods. The databases and current CRPs on A+M/PMI processes are briefly described here.

  17. Databases and coordinated research projects at the IAEA on atomic processes in plasmas

    International Nuclear Information System (INIS)

    Braams, Bastiaan J.; Chung, Hyun-Kyung

    2012-01-01

    The Atomic and Molecular Data Unit at the IAEA works with a network of national data centres to encourage and coordinate production and dissemination of fundamental data for atomic, molecular and plasma-material interaction (A+M/PMI) processes that are relevant to the realization of fusion energy. The Unit maintains numerical and bibliographical databases and has started a Wiki-style knowledge base. The Unit also contributes to A+M database interface standards and provides a search engine that offers a common interface to multiple numerical A+M/PMI databases. Coordinated Research Projects (CRPs) bring together fusion energy researchers and atomic, molecular and surface physicists for joint work towards the development of new data and new methods. The databases and current CRPs on A+M/PMI processes are briefly described here.

  18. Establishment of the Pediatric Obesity Weight Evaluation Registry: A National Research Collaborative for Identifying the Optimal Assessment and Treatment of Pediatric Obesity.

    Science.gov (United States)

    Kirk, Shelley; Armstrong, Sarah; King, Eileen; Trapp, Christine; Grow, Mollie; Tucker, Jared; Joseph, Madeline; Liu, Lenna; Weedn, Ashley; Sweeney, Brooke; Fox, Claudia; Fathima, Samreen; Williams, Ronald; Kim, Roy; Stratbucker, William

    2017-02-01

    Prospective patient registries have been successfully utilized in several disease states with a goal of improving treatment approaches through multi-institutional collaboration. The prevalence of youth with severe obesity is at a historic high in the United States, yet evidence to guide effective weight management is limited. The Pediatric Obesity Weight Evaluation Registry (POWER) was established in 2013 to identify and promote effective intervention strategies for pediatric obesity. Sites in POWER provide multicomponent pediatric weight management (PWM) care for youth with obesity and collect a defined set of demographic and clinical parameters, which they regularly submit to the POWER Data Coordinating Center. A program profile survey was completed by sites to describe characteristics of the respective PWM programs. From January 2014 through December 2015, 26 US sites were enrolled in POWER and had submitted data on 3643 youth with obesity. Ninety-five percent were 6-18 years of age, 54% female, 32% nonwhite, 32% Hispanic, and 59% publicly insured. Over two-thirds had severe obesity. All sites included a medical provider and used weight status in their referral criteria. Other program characteristics varied widely between sites. POWER is an established national registry representing a diverse sample of youth with obesity participating in multicomponent PWM programs across the United States. Using high-quality data collection and a collaborative research infrastructure, POWER aims to contribute to the development of evidence-based guidelines for multicomponent PWM programs.

  19. The Cardiomyopathy Registry of the EURObservational Research Programme of the European Society of Cardiology: baseline data and contemporary management of adult patients with cardiomyopathies.

    Science.gov (United States)

    Charron, Philippe; Elliott, Perry M; Gimeno, Juan R; Caforio, Alida L P; Kaski, Juan Pablo; Tavazzi, Luigi; Tendera, Michal; Maupain, Carole; Laroche, Cécile; Rubis, Pawel; Jurcut, Ruxandra; Calò, Leonardo; Heliö, Tiina M; Sinagra, Gianfranco; Zdravkovic, Marija; Kavoliuniene, Aušra; Felix, Stephan B; Grzybowski, Jacek; Losi, Maria-Angela; Asselbergs, Folkert W; García-Pinilla, José Manuel; Salazar-Mendiguchia, Joel; Mizia-Stec, Katarzyna; Maggioni, Aldo P

    2018-05-21

    The Cardiomyopathy Registry of the EURObservational Research Programme is a prospective, observational, and multinational registry of consecutive patients with four cardiomyopathy subtypes: hypertrophic cardiomyopathy (HCM), dilated cardiomyopathy (DCM), arrhythmogenic right ventricular cardiomyopathy (ARVC), and restrictive cardiomyopathy (RCM). We report the baseline characteristics and management of adults enrolled in the registry. A total of 3208 patients were enrolled by 69 centres in 18 countries [HCM (n = 1739); DCM (n = 1260); ARVC (n = 143); and RCM (n = 66)]. Differences between cardiomyopathy subtypes (P < 0.001) were observed for age at diagnosis, history of familial disease, history of sustained ventricular arrhythmia, use of magnetic resonance imaging or genetic testing, and implantation of defibrillators. When compared with probands, relatives had a lower age at diagnosis (P < 0.001), but a similar rate of symptoms and defibrillators. When compared with the Long-Term phase, patients of the Pilot phase (enrolled in more expert centres) had a more frequent rate of familial disease (P < 0.001), were more frequently diagnosed with a rare underlying disease (P < 0.001), and more frequently implanted with a defibrillator (P = 0.023). Comparing four geographical areas, patients from Southern Europe had a familial disease more frequently (P < 0.001), were more frequently diagnosed in the context of a family screening (P < 0.001), and more frequently diagnosed with a rare underlying disease (P < 0.001). By providing contemporary observational data on characteristics and management of patients with cardiomyopathies, the registry provides a platform for the evaluation of guideline implementation. Potential gaps with existing recommendations are discussed as well as some suggestions for improvement of health care provision in Europe.

  20. Validation of post-operative atrial fibrillation in the Western Denmark Heart Registry

    DEFF Research Database (Denmark)

    Munkholm, Sarah Bach; Jakobsen, Carl-Johan; Mortensen, Poul Erik

    2015-01-01

    INTRODUCTION: Post-operative new-onset atrial fibrillation and flutter (POAF) is associated with increased morbidity and mortality following cardiac surgery. Registers and databases are important data sources for observational studies in this research area; hence, the aim was to assess the data...... of the registry. FUNDING: none. TRIAL REGISTRATION: not relevant....

  1. Developing a provisional and national renal disease registry for Iran

    Directory of Open Access Journals (Sweden)

    Sima Ajami

    2015-01-01

    Full Text Available Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients′ characteristics as well as risk factors which eventually leads to making better decisions.

  2. WikiPathways: a multifaceted pathway database bridging metabolomics to other omics research.

    Science.gov (United States)

    Slenter, Denise N; Kutmon, Martina; Hanspers, Kristina; Riutta, Anders; Windsor, Jacob; Nunes, Nuno; Mélius, Jonathan; Cirillo, Elisa; Coort, Susan L; Digles, Daniela; Ehrhart, Friederike; Giesbertz, Pieter; Kalafati, Marianthi; Martens, Marvin; Miller, Ryan; Nishida, Kozo; Rieswijk, Linda; Waagmeester, Andra; Eijssen, Lars M T; Evelo, Chris T; Pico, Alexander R; Willighagen, Egon L

    2018-01-04

    WikiPathways (wikipathways.org) captures the collective knowledge represented in biological pathways. By providing a database in a curated, machine readable way, omics data analysis and visualization is enabled. WikiPathways and other pathway databases are used to analyze experimental data by research groups in many fields. Due to the open and collaborative nature of the WikiPathways platform, our content keeps growing and is getting more accurate, making WikiPathways a reliable and rich pathway database. Previously, however, the focus was primarily on genes and proteins, leaving many metabolites with only limited annotation. Recent curation efforts focused on improving the annotation of metabolism and metabolic pathways by associating unmapped metabolites with database identifiers and providing more detailed interaction knowledge. Here, we report the outcomes of the continued growth and curation efforts, such as a doubling of the number of annotated metabolite nodes in WikiPathways. Furthermore, we introduce an OpenAPI documentation of our web services and the FAIR (Findable, Accessible, Interoperable and Reusable) annotation of resources to increase the interoperability of the knowledge encoded in these pathways and experimental omics data. New search options, monthly downloads, more links to metabolite databases, and new portals make pathway knowledge more effortlessly accessible to individual researchers and research communities. © The Author(s) 2017. Published by Oxford University Press on behalf of Nucleic Acids Research.

  3. Use of a Relational Database to Support Clinical Research: Application in a Diabetes Program

    Science.gov (United States)

    Lomatch, Diane; Truax, Terry; Savage, Peter

    1981-01-01

    A database has been established to support conduct of clinical research and monitor delivery of medical care for 1200 diabetic patients as part of the Michigan Diabetes Research and Training Center (MDRTC). Use of an intelligent microcomputer to enter and retrieve the data and use of a relational database management system (DBMS) to store and manage data have provided a flexible, efficient method of achieving both support of small projects and monitoring overall activity of the Diabetes Center Unit (DCU). Simplicity of access to data, efficiency in providing data for unanticipated requests, ease of manipulations of relations, security and “logical data independence” were important factors in choosing a relational DBMS. The ability to interface with an interactive statistical program and a graphics program is a major advantage of this system. Out database currently provides support for the operation and analysis of several ongoing research projects.

  4. Protocol for developing a Database of Zoonotic disease Research in India (DoZooRI).

    Science.gov (United States)

    Chatterjee, Pranab; Bhaumik, Soumyadeep; Chauhan, Abhimanyu Singh; Kakkar, Manish

    2017-12-10

    Zoonotic and emerging infectious diseases (EIDs) represent a public health threat that has been acknowledged only recently although they have been on the rise for the past several decades. On an average, every year since the Second World War, one pathogen has emerged or re-emerged on a global scale. Low/middle-income countries such as India bear a significant burden of zoonotic and EIDs. We propose that the creation of a database of published, peer-reviewed research will open up avenues for evidence-based policymaking for targeted prevention and control of zoonoses. A large-scale systematic mapping of the published peer-reviewed research conducted in India will be undertaken. All published research will be included in the database, without any prejudice for quality screening, to broaden the scope of included studies. Structured search strategies will be developed for priority zoonotic diseases (leptospirosis, rabies, anthrax, brucellosis, cysticercosis, salmonellosis, bovine tuberculosis, Japanese encephalitis and rickettsial infections), and multiple databases will be searched for studies conducted in India. The database will be managed and hosted on a cloud-based platform called Rayyan. Individual studies will be tagged based on key preidentified parameters (disease, study design, study type, location, randomisation status and interventions, host involvement and others, as applicable). The database will incorporate already published studies, obviating the need for additional ethical clearances. The database will be made available online, and in collaboration with multisectoral teams, domains of enquiries will be identified and subsequent research questions will be raised. The database will be queried for these and resulting evidence will be analysed and published in peer-reviewed journals. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise

  5. Pediatric Contact Dermatitis Registry Inaugural Case Data.

    Science.gov (United States)

    Goldenberg, Alina; Mousdicas, Nico; Silverberg, Nanette; Powell, Douglas; Pelletier, Janice L; Silverberg, Jonathan I; Zippin, Jonathan; Fonacier, Luz; Tosti, Antonella; Lawley, Leslie; Wu Chang, Mary; Scheman, Andrew; Kleiner, Gary; Williams, Judith; Watsky, Kalman; Dunnick, Cory A; Frederickson, Rachel; Matiz, Catalina; Chaney, Keri; Estes, Tracy S; Botto, Nina; Draper, Michelle; Kircik, Leon; Lugo-Somolinos, Aida; Machler, Brian; Jacob, Sharon E

    2016-01-01

    Little is known about the epidemiology of allergic contact dermatitis (ACD) in US children. More widespread diagnostic confirmation through epicutaneous patch testing is needed. The aim was to quantify patch test results from providers evaluating US children. The study is a retrospective analysis of deidentified patch test results of children aged 18 years or younger, entered by participating providers in the Pediatric Contact Dermatitis Registry, during the first year of data collection (2015-2016). One thousand one hundred forty-two cases from 34 US states, entered by 84 providers, were analyzed. Sixty-five percent of cases had one or more positive patch test (PPT), with 48% of cases having 1 or more relevant positive patch test (RPPT). The most common PPT allergens were nickel (22%), fragrance mix I (11%), cobalt (9.1%), balsam of Peru (8.4%), neomycin (7.2%), propylene glycol (6.8%), cocamidopropyl betaine (6.4%), bacitracin (6.2%), formaldehyde (5.7%), and gold (5.7%). This US database provides multidisciplinary information on pediatric ACD, rates of PPT, and relevant RPPT reactions, validating the high rates of pediatric ACD previously reported in the literature. The registry database is the largest comprehensive collection of US-only pediatric patch test cases on which future research can be built. Continued collaboration between patients, health care providers, manufacturers, and policy makers is needed to decrease the most common allergens in pediatric consumer products.

  6. Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador.

    Science.gov (United States)

    Kosseim, Patricia; Pullman, Daryl; Perrot-Daley, Astrid; Hodgkinson, Kathy; Street, Catherine; Rahman, Proton

    2013-01-01

    To provide a legal and ethical analysis of some of the implementation challenges faced by the Population Therapeutics Research Group (PTRG) at Memorial University (Canada), in using genealogical information offered by individuals for its genetics research database. This paper describes the unique historical and genetic characteristics of the Newfoundland and Labrador founder population, which gave rise to the opportunity for PTRG to build the Newfoundland Genealogy Database containing digitized records of all pre-confederation (1949) census records of the Newfoundland founder population. In addition to building the database, PTRG has developed the Heritability Analytics Infrastructure, a data management structure that stores genotype, phenotype, and pedigree information in a single database, and custom linkage software (KINNECT) to perform pedigree linkages on the genealogy database. A newly adopted legal regimen in Newfoundland and Labrador is discussed. It incorporates health privacy legislation with a unique research ethics statute governing the composition and activities of research ethics boards and, for the first time in Canada, elevating the status of national research ethics guidelines into law. The discussion looks at this integration of legal and ethical principles which provides a flexible and seamless framework for balancing the privacy rights and welfare interests of individuals, families, and larger societies in the creation and use of research data infrastructures as public goods. The complementary legal and ethical frameworks that now coexist in Newfoundland and Labrador provide the legislative authority, ethical legitimacy, and practical flexibility needed to find a workable balance between privacy interests and public goods. Such an approach may also be instructive for other jurisdictions as they seek to construct and use biobanks and related research platforms for genetic research.

  7. Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador

    Science.gov (United States)

    Pullman, Daryl; Perrot-Daley, Astrid; Hodgkinson, Kathy; Street, Catherine; Rahman, Proton

    2013-01-01

    Objective To provide a legal and ethical analysis of some of the implementation challenges faced by the Population Therapeutics Research Group (PTRG) at Memorial University (Canada), in using genealogical information offered by individuals for its genetics research database. Materials and methods This paper describes the unique historical and genetic characteristics of the Newfoundland and Labrador founder population, which gave rise to the opportunity for PTRG to build the Newfoundland Genealogy Database containing digitized records of all pre-confederation (1949) census records of the Newfoundland founder population. In addition to building the database, PTRG has developed the Heritability Analytics Infrastructure, a data management structure that stores genotype, phenotype, and pedigree information in a single database, and custom linkage software (KINNECT) to perform pedigree linkages on the genealogy database. Discussion A newly adopted legal regimen in Newfoundland and Labrador is discussed. It incorporates health privacy legislation with a unique research ethics statute governing the composition and activities of research ethics boards and, for the first time in Canada, elevating the status of national research ethics guidelines into law. The discussion looks at this integration of legal and ethical principles which provides a flexible and seamless framework for balancing the privacy rights and welfare interests of individuals, families, and larger societies in the creation and use of research data infrastructures as public goods. Conclusion The complementary legal and ethical frameworks that now coexist in Newfoundland and Labrador provide the legislative authority, ethical legitimacy, and practical flexibility needed to find a workable balance between privacy interests and public goods. Such an approach may also be instructive for other jurisdictions as they seek to construct and use biobanks and related research platforms for genetic research. PMID

  8. Appropriateness of the food-pics image database for experimental eating and appetite research with adolescents.

    Science.gov (United States)

    Jensen, Chad D; Duraccio, Kara M; Barnett, Kimberly A; Stevens, Kimberly S

    2016-12-01

    Research examining effects of visual food cues on appetite-related brain processes and eating behavior has proliferated. Recently investigators have developed food image databases for use across experimental studies examining appetite and eating behavior. The food-pics image database represents a standardized, freely available image library originally validated in a large sample primarily comprised of adults. The suitability of the images for use with adolescents has not been investigated. The aim of the present study was to evaluate the appropriateness of the food-pics image library for appetite and eating research with adolescents. Three hundred and seven adolescents (ages 12-17) provided ratings of recognizability, palatability, and desire to eat, for images from the food-pics database. Moreover, participants rated the caloric content (high vs. low) and healthiness (healthy vs. unhealthy) of each image. Adolescents rated approximately 75% of the food images as recognizable. Approximately 65% of recognizable images were correctly categorized as high vs. low calorie and 63% were correctly classified as healthy vs. unhealthy in 80% or more of image ratings. These results suggest that a smaller subset of the food-pics image database is appropriate for use with adolescents. With some modifications to included images, the food-pics image database appears to be appropriate for use in experimental appetite and eating-related research conducted with adolescents. Copyright © 2016 Elsevier Ltd. All rights reserved.

  9. United States Transuranium and Uranium Registries: A human tissue research program. USTUR annual report for October 1, 1997 through January 31, 1999

    Energy Technology Data Exchange (ETDEWEB)

    Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed.)

    1999-10-01

    The United States Transuranium and Uranium Registries (USTUR) are a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This annual report covers October 1, 1997, through January 31, 1999; the reporting period has been extended so that future annual reports will coincide with the period covered by the grant itself.

  10. Immunization registries in the EMR Era

    Science.gov (United States)

    Stevens, Lindsay A.; Palma, Jonathan P.; Pandher, Kiran K.; Longhurst, Christopher A.

    2013-01-01

    Background: The CDC established a national objective to create population-based tracking of immunizations through regional and statewide registries nearly 2 decades ago, and these registries have increased coverage rates and reduced duplicate immunizations. With increased adoption of commercial electronic medical records (EMR), some institutions have used unidirectional links to send immunization data to designated registries. However, access to these registries within a vendor EMR has not been previously reported. Purpose: To develop a visually integrated interface between an EMR and a statewide immunization registry at a previously non-reporting hospital, and to assess subsequent changes in provider use and satisfaction. Methods: A group of healthcare providers were surveyed before and after implementation of the new interface. The surveys addressed access of the California Immunization Registry (CAIR), and satisfaction with the availability of immunization information. Information Technology (IT) teams developed a “smart-link” within the electronic patient chart that provides a single-click interface for visual integration of data within the CAIR database. Results: Use of the tool has increased in the months since its initiation, and over 20,000 new immunizations have been exported successfully to CAIR since the hospital began sharing data with the registry. Survey data suggest that providers find this tool improves workflow and overall satisfaction with availability of immunization data. (p=0.009). Conclusions: Visual integration of external registries into a vendor EMR system is feasible and improves provider satisfaction and registry reporting. PMID:23923096

  11. Danish Pancreatic Cancer Database

    DEFF Research Database (Denmark)

    Fristrup, Claus; Detlefsen, Sönke; Palnæs Hansen, Carsten

    2016-01-01

    : Death is monitored using data from the Danish Civil Registry. This registry monitors the survival status of the Danish population, and the registration is virtually complete. All data in the database are audited by all participating institutions, with respect to baseline characteristics, key indicators......AIM OF DATABASE: The Danish Pancreatic Cancer Database aims to prospectively register the epidemiology, diagnostic workup, diagnosis, treatment, and outcome of patients with pancreatic cancer in Denmark at an institutional and national level. STUDY POPULATION: Since May 1, 2011, all patients...... with microscopically verified ductal adenocarcinoma of the pancreas have been registered in the database. As of June 30, 2014, the total number of patients registered was 2,217. All data are cross-referenced with the Danish Pathology Registry and the Danish Patient Registry to ensure the completeness of registrations...

  12. Nationwide real-world database of 20,462 patients enrolled in the Japanese Acute Myocardial Infarction Registry (JAMIR): Impact of emergency coronary intervention in a super-aging population.

    Science.gov (United States)

    Kojima, Sunao; Nishihira, Kensaku; Takegami, Misa; Nakao, Yoko M; Honda, Satoshi; Takahashi, Jun; Takayama, Morimasa; Shimokawa, Hiroaki; Sumiyoshi, Tetsuya; Ogawa, Hisao; Kimura, Kazuo; Yasuda, Satoshi

    2018-09-01

    Cardiovascular diseases, including acute myocardial infarction (AMI), are leading causes of death among the Japanese, who have the longest life expectancy in the world. Over the past 50 years in Japan, the percentage of elderly individuals has increased 4-fold, from 5.7% in 1960 to 23.1% in 2010. To explore medical practices and emergency care for AMI in this aging society, the Japan Acute Myocardial Infarction Registry (JAMIR) was established as a nationwide real-world database. JAMIR conducted retrospective analysis of 20,462 AMI patients (mean age, 68.8 ± 13.3 years; 15,281 men [74.7%]) hospitalized between January 2011 and December 2013. The rates of ambulance use and emergency PCI were 78.9% and 87.9%, respectively. The median door-to-balloon time was 80 min (interquartile range, 53-143 min). Overall in-hospital mortality was 8.3%, including 6.6% due to cardiac death. JAMIR included 4837 patients aged ≥80 years (23.6%). In this age group, patients who underwent PCI (79.9%) had significantly lower in-hospital mortality than those who did not (11.1% vs. 36.9%, P  < 0.001). The large JAMIR database, with 24% of AMI patients aged ≥80 years, could provide useful information about medical care in an aging society. The reasonable in-hospital outcomes observed may justify consideration of PCI for patients with AMI aged ≥80 years.

  13. Moving to Google Cloud: Renovation of Global Borehole Temperature Database for Climate Research

    Science.gov (United States)

    Xiong, Y.; Huang, S.

    2013-12-01

    Borehole temperature comprises an independent archive of information on climate change which is complementary to the instrumental and other proxy climate records. With support from the international geothermal community, a global database of borehole temperatures has been constructed for the specific purpose of the study on climate change. Although this database has become an important data source in climate research, there are certain limitations partially because the framework of the existing borehole temperature database was hand-coded some twenty years ago. A database renovation work is now underway to take the advantages of the contemporary online database technologies. The major intended improvements include 1) dynamically linking a borehole site to Google Earth to allow for inspection of site specific geographical information; 2) dynamically linking an original key reference of a given borehole site to Google Scholar to allow for a complete list of related publications; and 3) enabling site selection and data download based on country, coordinate range, and contributor. There appears to be a good match between the enhancement requirements for this database and the functionalities of the newly released Google Fusion Tables application. Google Fusion Tables is a cloud-based service for data management, integration, and visualization. This experimental application can consolidate related online resources such as Google Earth, Google Scholar, and Google Drive for sharing and enriching an online database. It is user friendly, allowing users to apply filters and to further explore the internet for additional information regarding the selected data. The users also have ways to map, to chart, and to calculate on the selected data, and to download just the subset needed. The figure below is a snapshot of the database currently under Google Fusion Tables renovation. We invite contribution and feedback from the geothermal and climate research community to make the

  14. Routine health insurance data for scientific research: potential and limitations of the Agis Health Database.

    Science.gov (United States)

    Smeets, Hugo M; de Wit, Niek J; Hoes, Arno W

    2011-04-01

    Observational studies performed within routine health care databases have the advantage of their large size and, when the aim is to assess the effect of interventions, can offer a completion to randomized controlled trials with usually small samples from experimental situations. Institutional Health Insurance Databases (HIDs) are attractive for research because of their large size, their longitudinal perspective, and their practice-based information. As they are based on financial reimbursement, the information is generally reliable. The database of one of the major insurance companies in the Netherlands, the Agis Health Database (AHD), is described in detail. Whether the AHD data sets meet the specific requirements to conduct several types of clinical studies is discussed according to the classification of the four different types of clinical research; that is, diagnostic, etiologic, prognostic, and intervention research. The potential of the AHD for these various types of research is illustrated using examples of studies recently conducted in the AHD. HIDs such as the AHD offer large potential for several types of clinical research, in particular etiologic and intervention studies, but at present the lack of detailed clinical information is an important limitation. Copyright © 2011 Elsevier Inc. All rights reserved.

  15. Development of a computational database for probabilistic safety assessment of nuclear research reactors

    Energy Technology Data Exchange (ETDEWEB)

    Macedo, Vagner S.; Oliveira, Patricia S. Pagetti de; Andrade, Delvonei Alves de, E-mail: vagner.macedo@usp.br, E-mail: patricia@ipen.br, E-mail: delvonei@ipen.br [Instituto de Pesquisas Energeticas e Nucleares (IPEN/CNEN-SP), Sao Paulo, SP (Brazil)

    2015-07-01

    The objective of this work is to describe the database being developed at IPEN - CNEN / SP for application in the Probabilistic Safety Assessment of nuclear research reactors. The database can be accessed by means of a computational program installed in the corporate computer network, named IPEN Intranet, and this access will be allowed only to professionals previously registered. Data updating, editing and searching tasks will be controlled by a system administrator according to IPEN Intranet security rules. The logical model and the physical structure of the database can be represented by an Entity Relationship Model, which is based on the operational routines performed by IPEN - CNEN / SP users. The web application designed for the management of the database is named PSADB. It is being developed with MySQL database software and PHP programming language is being used. Data stored in this database are divided into modules that refer to technical specifications, operating history, maintenance history and failure events associated with the main components of the nuclear facilities. (author)

  16. Development of a computational database for probabilistic safety assessment of nuclear research reactors

    International Nuclear Information System (INIS)

    Macedo, Vagner S.; Oliveira, Patricia S. Pagetti de; Andrade, Delvonei Alves de

    2015-01-01

    The objective of this work is to describe the database being developed at IPEN - CNEN / SP for application in the Probabilistic Safety Assessment of nuclear research reactors. The database can be accessed by means of a computational program installed in the corporate computer network, named IPEN Intranet, and this access will be allowed only to professionals previously registered. Data updating, editing and searching tasks will be controlled by a system administrator according to IPEN Intranet security rules. The logical model and the physical structure of the database can be represented by an Entity Relationship Model, which is based on the operational routines performed by IPEN - CNEN / SP users. The web application designed for the management of the database is named PSADB. It is being developed with MySQL database software and PHP programming language is being used. Data stored in this database are divided into modules that refer to technical specifications, operating history, maintenance history and failure events associated with the main components of the nuclear facilities. (author)

  17. Validation of the Netherlands pacemaker patient registry

    NARCIS (Netherlands)

    Dijk, WA; Kingma, T; Hooijschuur, CAM; Dassen, WRM; Hoorntje, JCA; van Gelder, LM

    1997-01-01

    This paper deals with the validation of the information stored in the Netherlands central pacemaker patient database. At this moment the registry database contains information on more than 70500 patients, 85000 pacemakers and 90000 leads. The validation procedures consisted of an internal

  18. YPED: an integrated bioinformatics suite and database for mass spectrometry-based proteomics research.

    Science.gov (United States)

    Colangelo, Christopher M; Shifman, Mark; Cheung, Kei-Hoi; Stone, Kathryn L; Carriero, Nicholas J; Gulcicek, Erol E; Lam, TuKiet T; Wu, Terence; Bjornson, Robert D; Bruce, Can; Nairn, Angus C; Rinehart, Jesse; Miller, Perry L; Williams, Kenneth R

    2015-02-01

    We report a significantly-enhanced bioinformatics suite and database for proteomics research called Yale Protein Expression Database (YPED) that is used by investigators at more than 300 institutions worldwide. YPED meets the data management, archival, and analysis needs of a high-throughput mass spectrometry-based proteomics research ranging from a single laboratory, group of laboratories within and beyond an institution, to the entire proteomics community. The current version is a significant improvement over the first version in that it contains new modules for liquid chromatography-tandem mass spectrometry (LC-MS/MS) database search results, label and label-free quantitative proteomic analysis, and several scoring outputs for phosphopeptide site localization. In addition, we have added both peptide and protein comparative analysis tools to enable pairwise analysis of distinct peptides/proteins in each sample and of overlapping peptides/proteins between all samples in multiple datasets. We have also implemented a targeted proteomics module for automated multiple reaction monitoring (MRM)/selective reaction monitoring (SRM) assay development. We have linked YPED's database search results and both label-based and label-free fold-change analysis to the Skyline Panorama repository for online spectra visualization. In addition, we have built enhanced functionality to curate peptide identifications into an MS/MS peptide spectral library for all of our protein database search identification results. Copyright © 2015 The Authors. Production and hosting by Elsevier Ltd.. All rights reserved.

  19. Interacting with the National Database for Autism Research (NDAR) via the LONI Pipeline workflow environment.

    Science.gov (United States)

    Torgerson, Carinna M; Quinn, Catherine; Dinov, Ivo; Liu, Zhizhong; Petrosyan, Petros; Pelphrey, Kevin; Haselgrove, Christian; Kennedy, David N; Toga, Arthur W; Van Horn, John Darrell

    2015-03-01

    Under the umbrella of the National Database for Clinical Trials (NDCT) related to mental illnesses, the National Database for Autism Research (NDAR) seeks to gather, curate, and make openly available neuroimaging data from NIH-funded studies of autism spectrum disorder (ASD). NDAR has recently made its database accessible through the LONI Pipeline workflow design and execution environment to enable large-scale analyses of cortical architecture and function via local, cluster, or "cloud"-based computing resources. This presents a unique opportunity to overcome many of the customary limitations to fostering biomedical neuroimaging as a science of discovery. Providing open access to primary neuroimaging data, workflow methods, and high-performance computing will increase uniformity in data collection protocols, encourage greater reliability of published data, results replication, and broaden the range of researchers now able to perform larger studies than ever before. To illustrate the use of NDAR and LONI Pipeline for performing several commonly performed neuroimaging processing steps and analyses, this paper presents example workflows useful for ASD neuroimaging researchers seeking to begin using this valuable combination of online data and computational resources. We discuss the utility of such database and workflow processing interactivity as a motivation for the sharing of additional primary data in ASD research and elsewhere.

  20. Accessing the public MIMIC-II intensive care relational database for clinical research.

    Science.gov (United States)

    Scott, Daniel J; Lee, Joon; Silva, Ikaro; Park, Shinhyuk; Moody, George B; Celi, Leo A; Mark, Roger G

    2013-01-10

    The Multiparameter Intelligent Monitoring in Intensive Care II (MIMIC-II) database is a free, public resource for intensive care research. The database was officially released in 2006, and has attracted a growing number of researchers in academia and industry. We present the two major software tools that facilitate accessing the relational database: the web-based QueryBuilder and a downloadable virtual machine (VM) image. QueryBuilder and the MIMIC-II VM have been developed successfully and are freely available to MIMIC-II users. Simple example SQL queries and the resulting data are presented. Clinical studies pertaining to acute kidney injury and prediction of fluid requirements in the intensive care unit are shown as typical examples of research performed with MIMIC-II. In addition, MIMIC-II has also provided data for annual PhysioNet/Computing in Cardiology Challenges, including the 2012 Challenge "Predicting mortality of ICU Patients". QueryBuilder is a web-based tool that provides easy access to MIMIC-II. For more computationally intensive queries, one can locally install a complete copy of MIMIC-II in a VM. Both publicly available tools provide the MIMIC-II research community with convenient querying interfaces and complement the value of the MIMIC-II relational database.

  1. Data-Based Decision Making at the Policy, Research, and Practice Levels

    NARCIS (Netherlands)

    Schildkamp, Kim; Ebbeler, J.

    2015-01-01

    Data-based decision making (DBDM) can lead to school improvement. However, schools struggle with the implementation of DBDM. In this symposium, we will discuss research and the implementation of DBDM at the national and regional policy level and the classroom level. We will discuss policy issues

  2. On the advancement of highly cited research in China: An analysis of the Highly Cited database.

    Science.gov (United States)

    Li, John Tianci

    2018-01-01

    This study investigates the progress of highly cited research in China from 2001 to 2016 through the analysis of the Highly Cited database. The Highly Cited database, compiled by Clarivate Analytics, is comprised of the world's most influential researchers in the 22 Essential Science Indicator fields as catalogued by the Web of Science. The database is considered an international standard for the measurement of national and institutional highly cited research output. Overall, we found a consistent and substantial increase in Highly Cited Researchers from China during the timespan. The Chinese institutions with the most Highly Cited Researchers- the Chinese Academy of Sciences, Tsinghua University, Peking University, Zhejiang University, the University of Science and Technology of China, and BGI Shenzhen- are all top ten universities or primary government research institutions. Further evaluation of separate fields of research and government funding data from the National Natural Science Foundation of China revealed disproportionate growth efficiencies among the separate divisions of the National Natural Science Foundation. The most development occurred in the fields of Chemistry, Materials Sciences, and Engineering, whereas the least development occurred in Economics and Business, Health Sciences, and Life Sciences.

  3. Current trends and new challenges of databases and web applications for systems driven biological research

    Directory of Open Access Journals (Sweden)

    Pradeep Kumar eSreenivasaiah

    2010-12-01

    Full Text Available Dynamic and rapidly evolving nature of systems driven research imposes special requirements on the technology, approach, design and architecture of computational infrastructure including database and web application. Several solutions have been proposed to meet the expectations and novel methods have been developed to address the persisting problems of data integration. It is important for researchers to understand different technologies and approaches. Having familiarized with the pros and cons of the existing technologies, researchers can exploit its capabilities to the maximum potential for integrating data. In this review we discuss the architecture, design and key technologies underlying some of the prominent databases (DBs and web applications. We will mention their roles in integration of biological data and investigate some of the emerging design concepts and computational technologies that are likely to have a key role in the future of systems driven biomedical research.

  4. The Danish Anaesthesia Database

    Directory of Open Access Journals (Sweden)

    Antonsen K

    2016-10-01

    Full Text Available Kristian Antonsen,1 Charlotte Vallentin Rosenstock,2 Lars Hyldborg Lundstrøm2 1Board of Directors, Copenhagen University Hospital, Bispebjerg and Frederiksberg Hospital, Capital Region of Denmark, Denmark; 2Department of Anesthesiology, Copenhagen University Hospital, Nordsjællands Hospital-Hillerød, Capital Region of Denmark, Denmark Aim of database: The aim of the Danish Anaesthesia Database (DAD is the nationwide collection of data on all patients undergoing anesthesia. Collected data are used for quality assurance, quality development, and serve as a basis for research projects. Study population: The DAD was founded in 2004 as a part of Danish Clinical Registries (Regionernes Kliniske Kvalitetsudviklings Program [RKKP]. Patients undergoing general anesthesia, regional anesthesia with or without combined general anesthesia as well as patients under sedation are registered. Data are retrieved from public and private anesthesia clinics, single-centers as well as multihospital corporations across Denmark. In 2014 a total of 278,679 unique entries representing a national coverage of ~70% were recorded, data completeness is steadily increasing. Main variable: Records are aggregated for determining 13 defined quality indicators and eleven defined complications all covering the anesthetic process from the preoperative assessment through anesthesia and surgery until the end of the postoperative recovery period. Descriptive data: Registered variables include patients' individual social security number (assigned to all Danes and both direct patient-related lifestyle factors enabling a quantification of patients' comorbidity as well as variables that are strictly related to the type, duration, and safety of the anesthesia. Data and specific data combinations can be extracted within each department in order to monitor patient treatment. In addition, an annual DAD report is a benchmark for departments nationwide. Conclusion: The DAD is covering the

  5. The utility of linked cancer registry and health administration data for describing system-wide outcomes and research: a BreastScreen example.

    Science.gov (United States)

    Buckley, Elizabeth S; Sullivan, Tom; Farshid, Gelareh; Hiller, Janet E; Roder, David M

    2016-10-01

    Stratification of women with screen-detected ductal carcinoma in situ (DCIS) by risk of subsequent invasive breast cancer (IBC) could assist treatment planning and selection of surveillance protocols that accord with risk. We assessed the utility of routinely collected administrative data for stratifying by IBC risk following DCIS detection in a population-based screening programme to inform ongoing surveillance protocols. A retrospective cohort design was used, employing linked data from the South Australian breast screening programme and cancer registry. Women entered the study at screening commencement and were followed until IBC diagnosis, death or end of the study period (1 December 2010), whichever came first. Routinely collected administrative data were analyzed to identify predictors of invasive breast cancer. Proportional hazards regression confirmed that the DCIS cohort had an elevated risk of IBC after adjustment for relevant confounders (HR = 4.0 (95% CL 3.4, 4.8)), which accorded with previous study results. Within the DCIS cohort, conservative breast surgery and earlier year of screening commencement were both predictive of an elevated invasive breast cancer risk. These linked cancer registry and administrative data gave plausible estimates of IBC risk following DCIS diagnosis, but were limited in coverage of key items for further risk stratification. It is important that the research utility of administrative datasets is maximized in their design phase in collaboration with researchers. © 2016 John Wiley & Sons, Ltd.

  6. Product- and Process Units in the CRITT Translation Process Research Database

    DEFF Research Database (Denmark)

    Carl, Michael

    than 300 hours of text production. The database provides the raw logging data, as well as Tables of pre-processed product- and processing units. The TPR-DB includes various types of simple and composed product and process units that are intended to support the analysis and modelling of human text......The first version of the "Translation Process Research Database" (TPR DB v1.0) was released In August 2012, containing logging data of more than 400 translation and text production sessions. The current version of the TPR DB, (v1.4), contains data from more than 940 sessions, which represents more...

  7. PeDaB - the personal dosimetry database at the research centre Juelich

    International Nuclear Information System (INIS)

    Geisse, C.; Hill, P.; Paschke, M.; Hille, R.; Schlaeger, M.

    1998-01-01

    In May, 1997 the mainframe based registration, processing and archiving of personal monitoring data at the research centre Juelich (FZJ) was transferred to a client server system. A complex database application was developed. The client user interface is a Windows based Microsoft ACCESS application which is connected to an ORACLE database via ODBC and TCP/IP. The conversion covered all areas of personal dosimetry including internal and external exposition as well as administrative areas. A higher degree of flexibility, data security and integrity was achieved. (orig.) [de

  8. MouldingSandDB – a modern database storing moulding sands properties research results

    Directory of Open Access Journals (Sweden)

    J. Jakubski

    2011-01-01

    Full Text Available The complexity of foundry processes requires the use of modern, advanced IT tools for optimization, storage and analysis of t echnicaldata. Properties of moulding and core sands that are collected in research laboratories, manufacturers, and finally in the foundries, are not in use later on. It seems important to create a database that will allow to use the results stored, along with the possibility of searching according to set criteria, adjusted to casting practice. This paper presents part of the database named „MouldingSandDB”, which allows to collect and search data for synthetic moulding sands.

  9. MonetDB: Two Decades of Research in Column-oriented Database Architectures

    OpenAIRE

    Idreos, Stratos; Groffen, Fabian; Nes, Niels; Manegold, Stefan; Mullender, Sjoerd; Kersten, Martin

    2012-01-01

    textabstractMonetDB is a state-of-the-art open-source column-store database management system targeting applications in need for analytics over large collections of data. MonetDB is actively used nowadays in health care, in telecommunications as well as in scientific databases and in data management research, accumulating on average more than 10,000 downloads on a monthly basis. This paper gives a brief overview of the MonetDB technology as it developed over the past two decades and the main r...

  10. United States Transuranium Registry annual report October 1, 1977-October 1, 1978 to DOE Office of Health and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Norwood, W.D.; Newton, C.E. Jr.

    1979-01-01

    The US Transuranium Registry (USTR) serves as a center for the acquisition and recording of information of the transuranic elements in man and their effects on man. To data 15,045 US transuranium workers have been tabulated, authority for 1048 autopsies obtained, and 93 autopsies granted. Department of Energy contractor and National Regulatory Commission licensee activities at participating sites are discussed. A significant increase in participation from the Savannah River plant has been received during the past year. The low level transuranic measurement laboratory analyzing tissue specimens for the USTR (except Rocky Flats specimens) was transferred from Battelle Pacific Northwest Laboratory to Los Alamos Scientific Laboratory. Dr. Charles W. Mays was appointed Chairman of the USTR Advisory Committee upon the resignation of Dr. James H. Sterner. To improve the quality of autopsy tissue for analysis prosectors were appointed at the Hanford, Rocky Flats, and Los Alamos sites. USTR educational and informational activities were extensive and varied

  11. Research Outputs of England's Hospital Episode Statistics (HES) Database: Bibliometric Analysis.

    Science.gov (United States)

    Chaudhry, Zain; Mannan, Fahmida; Gibson-White, Angela; Syed, Usama; Ahmed, Shirin; Majeed, Azeem

    2017-12-06

    Hospital administrative data, such as those provided by the Hospital Episode Statistics (HES) database in England, are increasingly being used for research and quality improvement. To date, no study has tried to quantify and examine trends in the use of HES for research purposes. To examine trends in the use of HES data for research. Publications generated from the use of HES data were extracted from PubMed and analysed. Publications from 1996 to 2014 were then examined further in the Science Citation Index (SCI) of the Thompson Scientific Institute for Science Information (Web of Science) for details of research specialty area. 520 studies, categorised into 44 specialty areas, were extracted from PubMed. The review showed an increase in publications over the 18-year period with an average of 27 publications per year, however with the majority of output observed in the latter part of the study period. The highest number of publications was in the Health Statistics specialty area. The use of HES data for research is becoming more common. Increase in publications over time shows that researchers are beginning to take advantage of the potential of HES data. Although HES is a valuable database, concerns exist over the accuracy and completeness of the data entered. Clinicians need to be more engaged with HES for the full potential of this database to be harnessed.

  12. GDR (Genome Database for Rosaceae: integrated web resources for Rosaceae genomics and genetics research

    Directory of Open Access Journals (Sweden)

    Ficklin Stephen

    2004-09-01

    Full Text Available Abstract Background Peach is being developed as a model organism for Rosaceae, an economically important family that includes fruits and ornamental plants such as apple, pear, strawberry, cherry, almond and rose. The genomics and genetics data of peach can play a significant role in the gene discovery and the genetic understanding of related species. The effective utilization of these peach resources, however, requires the development of an integrated and centralized database with associated analysis tools. Description The Genome Database for Rosaceae (GDR is a curated and integrated web-based relational database. GDR contains comprehensive data of the genetically anchored peach physical map, an annotated peach EST database, Rosaceae maps and markers and all publicly available Rosaceae sequences. Annotations of ESTs include contig assembly, putative function, simple sequence repeats, and anchored position to the peach physical map where applicable. Our integrated map viewer provides graphical interface to the genetic, transcriptome and physical mapping information. ESTs, BACs and markers can be queried by various categories and the search result sites are linked to the integrated map viewer or to the WebFPC physical map sites. In addition to browsing and querying the database, users can compare their sequences with the annotated GDR sequences via a dedicated sequence similarity server running either the BLAST or FASTA algorithm. To demonstrate the utility of the integrated and fully annotated database and analysis tools, we describe a case study where we anchored Rosaceae sequences to the peach physical and genetic map by sequence similarity. Conclusions The GDR has been initiated to meet the major deficiency in Rosaceae genomics and genetics research, namely a centralized web database and bioinformatics tools for data storage, analysis and exchange. GDR can be accessed at http://www.genome.clemson.edu/gdr/.

  13. GDR (Genome Database for Rosaceae): integrated web resources for Rosaceae genomics and genetics research.

    Science.gov (United States)

    Jung, Sook; Jesudurai, Christopher; Staton, Margaret; Du, Zhidian; Ficklin, Stephen; Cho, Ilhyung; Abbott, Albert; Tomkins, Jeffrey; Main, Dorrie

    2004-09-09

    Peach is being developed as a model organism for Rosaceae, an economically important family that includes fruits and ornamental plants such as apple, pear, strawberry, cherry, almond and rose. The genomics and genetics data of peach can play a significant role in the gene discovery and the genetic understanding of related species. The effective utilization of these peach resources, however, requires the development of an integrated and centralized database with associated analysis tools. The Genome Database for Rosaceae (GDR) is a curated and integrated web-based relational database. GDR contains comprehensive data of the genetically anchored peach physical map, an annotated peach EST database, Rosaceae maps and markers and all publicly available Rosaceae sequences. Annotations of ESTs include contig assembly, putative function, simple sequence repeats, and anchored position to the peach physical map where applicable. Our integrated map viewer provides graphical interface to the genetic, transcriptome and physical mapping information. ESTs, BACs and markers can be queried by various categories and the search result sites are linked to the integrated map viewer or to the WebFPC physical map sites. In addition to browsing and querying the database, users can compare their sequences with the annotated GDR sequences via a dedicated sequence similarity server running either the BLAST or FASTA algorithm. To demonstrate the utility of the integrated and fully annotated database and analysis tools, we describe a case study where we anchored Rosaceae sequences to the peach physical and genetic map by sequence similarity. The GDR has been initiated to meet the major deficiency in Rosaceae genomics and genetics research, namely a centralized web database and bioinformatics tools for data storage, analysis and exchange. GDR can be accessed at http://www.genome.clemson.edu/gdr/.

  14. DOG-SPOT database for comprehensive management of dog genetic research data

    Directory of Open Access Journals (Sweden)

    Sutter Nathan B

    2010-12-01

    Full Text Available Abstract Research laboratories studying the genetics of companion animals have no database tools specifically designed to aid in the management of the many kinds of data that are generated, stored and analyzed. We have developed a relational database, "DOG-SPOT," to provide such a tool. Implemented in MS-Access, the database is easy to extend or customize to suit a lab's particular needs. With DOG-SPOT a lab can manage data relating to dogs, breeds, samples, biomaterials, phenotypes, owners, communications, amplicons, sequences, markers, genotypes and personnel. Such an integrated data structure helps ensure high quality data entry and makes it easy to track physical stocks of biomaterials and oligonucleotides.

  15. The FP4026 Research Database on the fundamental period of RC infilled frame structures.

    Science.gov (United States)

    Asteris, Panagiotis G

    2016-12-01

    The fundamental period of vibration appears to be one of the most critical parameters for the seismic design of buildings because it strongly affects the destructive impact of the seismic forces. In this article, important research data (entitled FP4026 Research Database (Fundamental Period-4026 cases of infilled frames) based on a detailed and in-depth analytical research on the fundamental period of reinforced concrete structures is presented. In particular, the values of the fundamental period which have been analytically determined are presented, taking into account the majority of the involved parameters. This database can be extremely valuable for the development of new code proposals for the estimation of the fundamental period of reinforced concrete structures fully or partially infilled with masonry walls.

  16. The FP4026 Research Database on the fundamental period of RC infilled frame structures

    Directory of Open Access Journals (Sweden)

    Panagiotis G. Asteris

    2016-12-01

    Full Text Available The fundamental period of vibration appears to be one of the most critical parameters for the seismic design of buildings because it strongly affects the destructive impact of the seismic forces. In this article, important research data (entitled FP4026 Research Database (Fundamental Period-4026 cases of infilled frames based on a detailed and in-depth analytical research on the fundamental period of reinforced concrete structures is presented. In particular, the values of the fundamental period which have been analytically determined are presented, taking into account the majority of the involved parameters. This database can be extremely valuable for the development of new code proposals for the estimation of the fundamental period of reinforced concrete structures fully or partially infilled with masonry walls.

  17. Astronomy Education Research Observations from the iSTAR international Study of Astronomical Reasoning Database

    Science.gov (United States)

    Tatge, C. B.; Slater, S. J.; Slater, T. F.; Schleigh, S.; McKinnon, D.

    2016-12-01

    Historically, an important part of the scientific research cycle is to situate any research project within the landscape of the existing scientific literature. In the field of discipline-based astronomy education research, grappling with the existing literature base has proven difficult because of the difficulty in obtaining research reports from around the world, particularly early ones. In order to better survey and efficiently utilize the wide and fractured range and domain of astronomy education research methods and results, the iSTAR international Study of Astronomical Reasoning database project was initiated. The project aims to host a living, online repository of dissertations, theses, journal articles, and grey literature resources to serve the world's discipline-based astronomy education research community. The first domain of research artifacts ingested into the iSTAR database were doctoral dissertations. To the authors' great surprise, nearly 300 astronomy education research dissertations were found from the last 100-years. Few, if any, of the literature reviews from recent astronomy education dissertations surveyed even come close to summarizing this many dissertations, most of which have not been published in traditional journals, as re-publishing one's dissertation research as a journal article was not a widespread custom in the education research community until recently. A survey of the iSTAR database dissertations reveals that the vast majority of work has been largely quantitative in nature until the last decade. We also observe that modern-era astronomy education research writings reaches as far back as 1923 and that the majority of dissertations come from the same eight institutions. Moreover, most of the astronomy education research work has been done covering learners' grasp of broad knowledge of astronomy rather than delving into specific learning targets, which has been more in vogue during the last two decades. The surprisingly wide breadth

  18. Respiratory infections research in afghanistan: bibliometric analysis with the database pubmed

    International Nuclear Information System (INIS)

    Pilsezek, F.H.

    2015-01-01

    Infectious diseases research in a low-income country like Afghanistan is important. Methods: In this study an internet-based database Pubmed was used for bibliometric analysis of infectious diseases research activity. Research publications entries in PubMed were analysed according to number of publications, topic, publication type, and country of investigators. Results: Between 2002-2011, 226 (77.7%) publications with the following research topics were identified: respiratory infections 3 (1.3%); parasites 8 (3.5%); diarrhoea 10 (4.4%); tuberculosis 10 (4.4%); human immunodeficiency virus (HIV) 11(4.9%); multi-drug resistant bacteria (MDR) 18(8.0%); polio 31(13.7%); leishmania 31(13.7%); malaria 46(20.4%). From 2002-2011, 11 (4.9%) publications were basic science laboratory-based research studies. Between 2002-2011, 8 (3.5%) publications from Afghan institutions were identified. Conclusion: In conclusion, the internet-based database Pubmed can be consulted to collect data for guidance of infectious diseases research activity of low-income countries. The presented data suggest that infectious diseases research in Afghanistan is limited for respiratory infections research, has few studies conducted by Afghan institutions, and limited laboratory-based research contributions. (author)

  19. RESPIRATORY INFECTIONS RESEARCH IN AFGHANISTAN: BIBLIOMETRIC ANALYSIS WITH THE DATABASE PUBMED.

    Science.gov (United States)

    Pilsczek, Florian H

    2015-01-01

    Infectious diseases research in a low-income country like Afghanistan is important. In this study an internet-based database Pubmed was used for bibliometric analysis of infectious diseases research activity. Research publications entries in PubMed were analysed according to number of publications, topic, publication type, and country of investigators. Between 2002-2011, 226 (77.7%) publications with the following research topics were identified: respiratory infections 3 (1.3%); parasites 8 (3.5%); diarrhoea 10 (4.4%); tuberculosis 10 (4.4%); human immunodeficiency virus (HIV) 11 (4.9%); multi-drug resistant bacteria (MDR) 18 (8.0%); polio 31 (13.7%); leishmania 31 (13.7%); malaria 46 (20.4%). From 2002-2011, 11 (4.9%) publications were basic science laboratory-based research studies. Between 2002-2011, 8 (3.5%) publications from Afghan institutions were identified. In conclusion, the internet-based database Pubmed can be consulted to collect data for guidance of infectious diseases research activity of low-income countries. The presented data suggest that infectious diseases research in Afghanistan is limited for respiratory infections research, has few studies conducted by Afghan institutions, and limited laboratory-based research contributions.

  20. EMI Registry Design

    CERN Document Server

    Memon, S

    2011-01-01

    Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

  1. Registry of EPA Applications, Models, and Databases

    Data.gov (United States)

    U.S. Environmental Protection Agency — READ is EPA's authoritative source for information about Agency information resources, including applications/systems, datasets and models. READ is one component of...

  2. MIPS PlantsDB: a database framework for comparative plant genome research.

    Science.gov (United States)

    Nussbaumer, Thomas; Martis, Mihaela M; Roessner, Stephan K; Pfeifer, Matthias; Bader, Kai C; Sharma, Sapna; Gundlach, Heidrun; Spannagl, Manuel

    2013-01-01

    The rapidly increasing amount of plant genome (sequence) data enables powerful comparative analyses and integrative approaches and also requires structured and comprehensive information resources. Databases are needed for both model and crop plant organisms and both intuitive search/browse views and comparative genomics tools should communicate the data to researchers and help them interpret it. MIPS PlantsDB (http://mips.helmholtz-muenchen.de/plant/genomes.jsp) was initially described in NAR in 2007 [Spannagl,M., Noubibou,O., Haase,D., Yang,L., Gundlach,H., Hindemitt, T., Klee,K., Haberer,G., Schoof,H. and Mayer,K.F. (2007) MIPSPlantsDB-plant database resource for integrative and comparative plant genome research. Nucleic Acids Res., 35, D834-D840] and was set up from the start to provide data and information resources for individual plant species as well as a framework for integrative and comparative plant genome research. PlantsDB comprises database instances for tomato, Medicago, Arabidopsis, Brachypodium, Sorghum, maize, rice, barley and wheat. Building up on that, state-of-the-art comparative genomics tools such as CrowsNest are integrated to visualize and investigate syntenic relationships between monocot genomes. Results from novel genome analysis strategies targeting the complex and repetitive genomes of triticeae species (wheat and barley) are provided and cross-linked with model species. The MIPS Repeat Element Database (mips-REdat) and Catalog (mips-REcat) as well as tight connections to other databases, e.g. via web services, are further important components of PlantsDB.

  3. EsPRit: ethics committee proposals for Long Term Medical Data Registries in rapidly evolving research fields - a future-proof best practice approach.

    Science.gov (United States)

    Oberbichler, S; Hackl, W O; Hörbst, A

    2017-10-18

    Long-term data collection is a challenging task in the domain of medical research. Many effects in medicine require long periods of time to become traceable e.g. the development of secondary malignancies based on a given radiotherapeutic treatment of the primary disease. Nevertheless, long-term studies often suffer from an initial lack of available information, thus disallowing a standardized approach for their approval by the ethics committee. This is due to several factors, such as the lack of existing case report forms or an explorative research approach in which data elements may change over time. In connection with current medical research and the ongoing digitalization in medicine, Long Term Medical Data Registries (MDR-LT) have become an important means of collecting and analyzing study data. As with any clinical study, ethical aspects must be taken into account when setting up such registries. This work addresses the problem of creating a valid, high-quality ethics committee proposal for medical registries by suggesting groups of tasks (building blocks), information sources and appropriate methods for collecting and analyzing the information, as well as a process model to compile an ethics committee proposal (EsPRit). To derive the building blocks and associated methods software and requirements engineering approaches were utilized. Furthermore, a process-oriented approach was chosen, as information required in the creating process of ethics committee proposals remain unknown in the beginning of planning an MDR-LT. Here, we derived the needed steps from medical product certification. This was done as the medical product certification itself also communicates a process-oriented approach rather than merely focusing on content. A proposal was created for validation and inspection of applicability by using the proposed building blocks. The proposed best practice was tested and refined within SEMPER (Secondary Malignoma - Prospective Evaluation of the

  4. Status of research reactor spent fuel world-wide: Database summary

    International Nuclear Information System (INIS)

    Ritchie, I.G.

    1996-01-01

    Results complied in the research reactor spent fuel database are used to assess the status of research reactor spent fuel world-wide. Fuel assemblies, their types, enrichment, origin of enrichment and geological distribution among the industrialized and developed countries of the world are discussed. Fuel management practices in wet and dry storage facilities and the concerns of reactor operators about long-term storage of their spent fuel are presented and some of the activities carried out by the International Atomic Energy Agency to address the issues associated with research reactor spent fuel are outlined. (author). 4 refs, 17 figs, 4 tabs

  5. The Danish Testicular Cancer database.

    Science.gov (United States)

    Daugaard, Gedske; Kier, Maria Gry Gundgaard; Bandak, Mikkel; Mortensen, Mette Saksø; Larsson, Heidi; Søgaard, Mette; Toft, Birgitte Groenkaer; Engvad, Birte; Agerbæk, Mads; Holm, Niels Vilstrup; Lauritsen, Jakob

    2016-01-01

    The nationwide Danish Testicular Cancer database consists of a retrospective research database (DaTeCa database) and a prospective clinical database (Danish Multidisciplinary Cancer Group [DMCG] DaTeCa database). The aim is to improve the quality of care for patients with testicular cancer (TC) in Denmark, that is, by identifying risk factors for relapse, toxicity related to treatment, and focusing on late effects. All Danish male patients with a histologically verified germ cell cancer diagnosis in the Danish Pathology Registry are included in the DaTeCa databases. Data collection has been performed from 1984 to 2007 and from 2013 onward, respectively. The retrospective DaTeCa database contains detailed information with more than 300 variables related to histology, stage, treatment, relapses, pathology, tumor markers, kidney function, lung function, etc. A questionnaire related to late effects has been conducted, which includes questions regarding social relationships, life situation, general health status, family background, diseases, symptoms, use of medication, marital status, psychosocial issues, fertility, and sexuality. TC survivors alive on October 2014 were invited to fill in this questionnaire including 160 validated questions. Collection of questionnaires is still ongoing. A biobank including blood/sputum samples for future genetic analyses has been established. Both samples related to DaTeCa and DMCG DaTeCa database are included. The prospective DMCG DaTeCa database includes variables regarding histology, stage, prognostic group, and treatment. The DMCG DaTeCa database has existed since 2013 and is a young clinical database. It is necessary to extend the data collection in the prospective database in order to answer quality-related questions. Data from the retrospective database will be added to the prospective data. This will result in a large and very comprehensive database for future studies on TC patients.

  6. Development of the Database for Environmental Sound Research and Application (DESRA: Design, Functionality, and Retrieval Considerations

    Directory of Open Access Journals (Sweden)

    Brian Gygi

    2010-01-01

    Full Text Available Theoretical and applied environmental sounds research is gaining prominence but progress has been hampered by the lack of a comprehensive, high quality, accessible database of environmental sounds. An ongoing project to develop such a resource is described, which is based upon experimental evidence as to the way we listen to sounds in the world. The database will include a large number of sounds produced by different sound sources, with a thorough background for each sound file, including experimentally obtained perceptual data. In this way DESRA can contain a wide variety of acoustic, contextual, semantic, and behavioral information related to an individual sound. It will be accessible on the Internet and will be useful to researchers, engineers, sound designers, and musicians.

  7. Third research coordination meeting on reference database for neutron activation analysis. Summary report

    International Nuclear Information System (INIS)

    Kellett, M.A.

    2009-12-01

    The third meeting of the Co-ordinated Research Project on 'Reference Database for Neutron Activation Analysis' was held at the IAEA, Vienna from 17-19 November 2008. A summary of presentations made by participants is given, reports on specific tasks and subsequent discussions. With the aim of finalising the work of this CRP and in order to meet initial objectives, outputs were discussed and detailed task assignments agreed upon. (author)

  8. Second generation registry framework.

    Science.gov (United States)

    Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

    2014-01-01

    Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that

  9. CmMDb: a versatile database for Cucumis melo microsatellite markers and other horticulture crop research.

    Science.gov (United States)

    Bhawna; Chaduvula, Pavan K; Bonthala, Venkata S; Manjusha, Verma; Siddiq, Ebrahimali A; Polumetla, Ananda K; Prasad, Gajula M N V

    2015-01-01

    Cucumis melo L. that belongs to Cucurbitaceae family ranks among one of the highest valued horticulture crops being cultivated across the globe. Besides its economical and medicinal importance, Cucumis melo L. is a valuable resource and model system for the evolutionary studies of cucurbit family. However, very limited numbers of molecular markers were reported for Cucumis melo L. so far that limits the pace of functional genomic research in melon and other similar horticulture crops. We developed the first whole genome based microsatellite DNA marker database of Cucumis melo L. and comprehensive web resource that aids in variety identification and physical mapping of Cucurbitaceae family. The Cucumis melo L. microsatellite database (CmMDb: http://65.181.125.102/cmmdb2/index.html) encompasses 39,072 SSR markers along with its motif repeat, motif length, motif sequence, marker ID, motif type and chromosomal locations. The database is featured with novel automated primer designing facility to meet the needs of wet lab researchers. CmMDb is a freely available web resource that facilitates the researchers to select the most appropriate markers for marker-assisted selection in melons and to improve breeding strategies.

  10. Validating the extract, transform, load process used to populate a large clinical research database.

    Science.gov (United States)

    Denney, Michael J; Long, Dustin M; Armistead, Matthew G; Anderson, Jamie L; Conway, Baqiyyah N

    2016-10-01

    Informaticians at any institution that are developing clinical research support infrastructure are tasked with populating research databases with data extracted and transformed from their institution's operational databases, such as electronic health records (EHRs). These data must be properly extracted from these source systems, transformed into a standard data structure, and then loaded into the data warehouse while maintaining the integrity of these data. We validated the correctness of the extract, load, and transform (ETL) process of the extracted data of West Virginia Clinical and Translational Science Institute's Integrated Data Repository, a clinical data warehouse that includes data extracted from two EHR systems. Four hundred ninety-eight observations were randomly selected from the integrated data repository and compared with the two source EHR systems. Of the 498 observations, there were 479 concordant and 19 discordant observations. The discordant observations fell into three general categories: a) design decision differences between the IDR and source EHRs, b) timing differences, and c) user interface settings. After resolving apparent discordances, our integrated data repository was found to be 100% accurate relative to its source EHR systems. Any institution that uses a clinical data warehouse that is developed based on extraction processes from operational databases, such as EHRs, employs some form of an ETL process. As secondary use of EHR data begins to transform the research landscape, the importance of the basic validation of the extracted EHR data cannot be underestimated and should start with the validation of the extraction process itself. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  11. A European Flood Database: facilitating comprehensive flood research beyond administrative boundaries

    Directory of Open Access Journals (Sweden)

    J. Hall

    2015-06-01

    Full Text Available The current work addresses one of the key building blocks towards an improved understanding of flood processes and associated changes in flood characteristics and regimes in Europe: the development of a comprehensive, extensive European flood database. The presented work results from ongoing cross-border research collaborations initiated with data collection and joint interpretation in mind. A detailed account of the current state, characteristics and spatial and temporal coverage of the European Flood Database, is presented. At this stage, the hydrological data collection is still growing and consists at this time of annual maximum and daily mean discharge series, from over 7000 hydrometric stations of various data series lengths. Moreover, the database currently comprises data from over 50 different data sources. The time series have been obtained from different national and regional data sources in a collaborative effort of a joint European flood research agreement based on the exchange of data, models and expertise, and from existing international data collections and open source websites. These ongoing efforts are contributing to advancing the understanding of regional flood processes beyond individual country boundaries and to a more coherent flood research in Europe.

  12. An attempt to develop a database for epidemiological research in Semipalatinsk

    International Nuclear Information System (INIS)

    Katayama, Hiroaki; Apsalikov, K.N.; Gusev, B.I.; Galich, B.; Madieva, M.; Koshpessova, G.; Abdikarimova, A.; Hoshi, Masaharu

    2006-01-01

    The present paper reports progress and problems in our development of a database for comprehensive epidemiological research in Semipalatinsk whose ultimate aim is to examine the effects of low dose radiation exposure on the human body. The database was constructed and set up at the Scientific Research Institute of Radiation Medicine Ecology in 2003, and the number of data entries into the database reached 110,000 on 31 January 2005. However, we face some problems concerning size, accuracy and reliability of data which hinder full epidemiological analysis. Firstly we need fuller bias free data. The second task is to establish a committee for a discussion of the analysis, which should be composed of statisticians and epidemiologists, to conduct a research project from a long-term perspective, and carry out the collection of data effectively, along the lines of the project. Due to the insufficiency of data collected so far, our analysis is limited to showing the trends in mortality rates in the high and low dose areas. (author)

  13. Towards efficient use of research resources: a nationwide database of ongoing primary care research projects in the Netherlands.

    Science.gov (United States)

    Kortekaas, Marlous F; van de Pol, Alma C; van der Horst, Henriëtte E; Burgers, Jako S; Slort, Willemjan; de Wit, Niek J

    2014-04-01

    PURPOSE. Although in the last decades primary care research has evolved with great success, there is a growing need to prioritize the topics given the limited resources available. Therefore, we constructed a nationwide database of ongoing primary care research projects in the Netherlands, and we assessed if the distribution of research topics matched with primary care practice. We conducted a survey among the main primary care research centres in the Netherlands and gathered details of all ongoing primary care research projects. We classified the projects according to research topic, relation to professional guidelines and knowledge deficits, collaborative partners and funding source. Subsequently, we compared the frequency distribution of clinical topics of research projects to the prevalence of problems in primary care practice. We identified 296 ongoing primary care research projects from 11 research centres. Most projects were designed as randomized controlled trial (35%) or observational cohort (34%), and government funded mostly (60%). Thematically, most research projects addressed chronic diseases, mainly cardiovascular risk management (8%), depressive disorders (8%) and diabetes mellitus (7%). One-fifth of the projects was related to defined knowledge deficits in primary care guidelines. From a clinical primary care perspective, research projects on dermatological problems were significantly underrepresented (P = 0.01). This survey of ongoing projects demonstrates that primary care research has a firm basis in the Netherlands, with a strong focus on chronic disease. The fit with primary care practice can improve, and future research should address knowledge deficits in professional guidelines more.

  14. A DICOM based radiotherapy plan database for research collaboration and reporting

    International Nuclear Information System (INIS)

    Westberg, J; Krogh, S; Brink, C; Vogelius, I R

    2014-01-01

    Purpose: To create a central radiotherapy (RT) plan database for dose analysis and reporting, capable of calculating and presenting statistics on user defined patient groups. The goal is to facilitate multi-center research studies with easy and secure access to RT plans and statistics on protocol compliance. Methods: RT institutions are able to send data to the central database using DICOM communications on a secure computer network. The central system is composed of a number of DICOM servers, an SQL database and in-house developed software services to process the incoming data. A web site within the secure network allows the user to manage their submitted data. Results: The RT plan database has been developed in Microsoft .NET and users are able to send DICOM data between RT centers in Denmark. Dose-volume histogram (DVH) calculations performed by the system are comparable to those of conventional RT software. A permission system was implemented to ensure access control and easy, yet secure, data sharing across centers. The reports contain DVH statistics for structures in user defined patient groups. The system currently contains over 2200 patients in 14 collaborations. Conclusions: A central RT plan repository for use in multi-center trials and quality assurance was created. The system provides an attractive alternative to dummy runs by enabling continuous monitoring of protocol conformity and plan metrics in a trial.

  15. A DICOM based radiotherapy plan database for research collaboration and reporting

    Science.gov (United States)

    Westberg, J.; Krogh, S.; Brink, C.; Vogelius, I. R.

    2014-03-01

    Purpose: To create a central radiotherapy (RT) plan database for dose analysis and reporting, capable of calculating and presenting statistics on user defined patient groups. The goal is to facilitate multi-center research studies with easy and secure access to RT plans and statistics on protocol compliance. Methods: RT institutions are able to send data to the central database using DICOM communications on a secure computer network. The central system is composed of a number of DICOM servers, an SQL database and in-house developed software services to process the incoming data. A web site within the secure network allows the user to manage their submitted data. Results: The RT plan database has been developed in Microsoft .NET and users are able to send DICOM data between RT centers in Denmark. Dose-volume histogram (DVH) calculations performed by the system are comparable to those of conventional RT software. A permission system was implemented to ensure access control and easy, yet secure, data sharing across centers. The reports contain DVH statistics for structures in user defined patient groups. The system currently contains over 2200 patients in 14 collaborations. Conclusions: A central RT plan repository for use in multi-center trials and quality assurance was created. The system provides an attractive alternative to dummy runs by enabling continuous monitoring of protocol conformity and plan metrics in a trial.

  16. MIMIC II: a massive temporal ICU patient database to support research in intelligent patient monitoring

    Science.gov (United States)

    Saeed, M.; Lieu, C.; Raber, G.; Mark, R. G.

    2002-01-01

    Development and evaluation of Intensive Care Unit (ICU) decision-support systems would be greatly facilitated by the availability of a large-scale ICU patient database. Following our previous efforts with the MIMIC (Multi-parameter Intelligent Monitoring for Intensive Care) Database, we have leveraged advances in networking and storage technologies to develop a far more massive temporal database, MIMIC II. MIMIC II is an ongoing effort: data is continuously and prospectively archived from all ICU patients in our hospital. MIMIC II now consists of over 800 ICU patient records including over 120 gigabytes of data and is growing. A customized archiving system was used to store continuously up to four waveforms and 30 different parameters from ICU patient monitors. An integrated user-friendly relational database was developed for browsing of patients' clinical information (lab results, fluid balance, medications, nurses' progress notes). Based upon its unprecedented size and scope, MIMIC II will prove to be an important resource for intelligent patient monitoring research, and will support efforts in medical data mining and knowledge-discovery.

  17. Creating a sampling frame for population-based veteran research: representativeness and overlap of VA and Department of Defense databases.

    Science.gov (United States)

    Washington, Donna L; Sun, Su; Canning, Mark

    2010-01-01

    Most veteran research is conducted in Department of Veterans Affairs (VA) healthcare settings, although most veterans obtain healthcare outside the VA. Our objective was to determine the adequacy and relative contributions of Veterans Health Administration (VHA), Veterans Benefits Administration (VBA), and Department of Defense (DOD) administrative databases for representing the U.S. veteran population, using as an example the creation of a sampling frame for the National Survey of Women Veterans. In 2008, we merged the VHA, VBA, and DOD databases. We identified the number of unique records both overall and from each database. The combined databases yielded 925,946 unique records, representing 51% of the 1,802,000 U.S. women veteran population. The DOD database included 30% of the population (with 8% overlap with other databases). The VHA enrollment database contributed an additional 20% unique women veterans (with 6% overlap with VBA databases). VBA databases contributed an additional 2% unique women veterans (beyond 10% overlap with other databases). Use of VBA and DOD databases substantially expands access to the population of veterans beyond those in VHA databases, regardless of VA use. Adoption of these additional databases would enhance the value and generalizability of a wide range of studies of both male and female veterans.

  18. Building a recruitment database for asthma trials: a conceptual framework for the creation of the UK Database of Asthma Research Volunteers.

    Science.gov (United States)

    Nwaru, Bright I; Soyiri, Ireneous N; Simpson, Colin R; Griffiths, Chris; Sheikh, Aziz

    2016-05-26

    Randomised clinical trials are the 'gold standard' for evaluating the effectiveness of healthcare interventions. However, successful recruitment of participants remains a key challenge for many trialists. In this paper, we present a conceptual framework for creating a digital, population-based database for the recruitment of asthma patients into future asthma trials in the UK. Having set up the database, the goal is to then make it available to support investigators planning asthma clinical trials. The UK Database of Asthma Research Volunteers will comprise a web-based front-end that interactively allows participant registration, and a back-end that houses the database containing participants' key relevant data. The database will be hosted and maintained at a secure server at the Asthma UK Centre for Applied Research based at The University of Edinburgh. Using a range of invitation strategies, key demographic and clinical data will be collected from those pre-consenting to consider participation in clinical trials. These data will, with consent, in due course, be linkable to other healthcare, social, economic, and genetic datasets. To use the database, asthma investigators will send their eligibility criteria for participant recruitment; eligible participants will then be informed about the new trial and asked if they wish to participate. A steering committee will oversee the running of the database, including approval of usage access. Novel communication strategies will be utilised to engage participants who are recruited into the database in order to avoid attrition as a result of waiting time to participation in a suitable trial, and to minimise the risk of their being approached when already enrolled in a trial. The value of this database will be whether it proves useful and usable to researchers in facilitating recruitment into clinical trials on asthma and whether patient privacy and data security are protected in meeting this aim. Successful recruitment is

  19. A Systematic Review of Coding Systems Used in Pharmacoepidemiology and Database Research.

    Science.gov (United States)

    Chen, Yong; Zivkovic, Marko; Wang, Tongtong; Su, Su; Lee, Jianyi; Bortnichak, Edward A

    2018-02-01

    Clinical coding systems have been developed to translate real-world healthcare information such as prescriptions, diagnoses and procedures into standardized codes appropriate for use in large healthcare datasets. Due to the lack of information on coding system characteristics and insufficient uniformity in coding practices, there is a growing need for better understanding of coding systems and their use in pharmacoepidemiology and observational real world data research. To determine: 1) the number of available coding systems and their characteristics, 2) which pharmacoepidemiology databases are they adopted in, 3) what outcomes and exposures can be identified from each coding system, and 4) how robust they are with respect to consistency and validity in pharmacoepidemiology and observational database studies. Electronic literature database and unpublished literature searches, as well as hand searching of relevant journals were conducted to identify eligible articles discussing characteristics and applications of coding systems in use and published in the English language between 1986 and 2016. Characteristics considered included type of information captured by codes, clinical setting(s) of use, adoption by a pharmacoepidemiology database, region, and available mappings. Applications articles describing the use and validity of specific codes, code lists, or algorithms were also included. Data extraction was performed independently by two reviewers and a narrative synthesis was performed. A total of 897 unique articles and 57 coding systems were identified, 17% of which included country-specific modifications or multiple versions. Procedures (55%), diagnoses (36%), drugs (38%), and site of disease (39%) were most commonly and directly captured by these coding systems. The systems were used to capture information from the following clinical settings: inpatient (63%), ambulatory (55%), emergency department (ED, 34%), and pharmacy (13%). More than half of all coding

  20. Chess databases as a research vehicle in psychology: Modeling large data.

    Science.gov (United States)

    Vaci, Nemanja; Bilalić, Merim

    2017-08-01

    The game of chess has often been used for psychological investigations, particularly in cognitive science. The clear-cut rules and well-defined environment of chess provide a model for investigations of basic cognitive processes, such as perception, memory, and problem solving, while the precise rating system for the measurement of skill has enabled investigations of individual differences and expertise-related effects. In the present study, we focus on another appealing feature of chess-namely, the large archive databases associated with the game. The German national chess database presented in this study represents a fruitful ground for the investigation of multiple longitudinal research questions, since it collects the data of over 130,000 players and spans over 25 years. The German chess database collects the data of all players, including hobby players, and all tournaments played. This results in a rich and complete collection of the skill, age, and activity of the whole population of chess players in Germany. The database therefore complements the commonly used expertise approach in cognitive science by opening up new possibilities for the investigation of multiple factors that underlie expertise and skill acquisition. Since large datasets are not common in psychology, their introduction also raises the question of optimal and efficient statistical analysis. We offer the database for download and illustrate how it can be used by providing concrete examples and a step-by-step tutorial using different statistical analyses on a range of topics, including skill development over the lifetime, birth cohort effects, effects of activity and inactivity on skill, and gender differences.

  1. Fine-grained policy control in U.S. Army Research Laboratory (ARL) multimodal signatures database

    Science.gov (United States)

    Bennett, Kelly; Grueneberg, Keith; Wood, David; Calo, Seraphin

    2014-06-01

    The U.S. Army Research Laboratory (ARL) Multimodal Signatures Database (MMSDB) consists of a number of colocated relational databases representing a collection of data from various sensors. Role-based access to this data is granted to external organizations such as DoD contractors and other government agencies through a client Web portal. In the current MMSDB system, access control is only at the database and firewall level. In order to offer finer grained security, changes to existing user profile schemas and authentication mechanisms are usually needed. In this paper, we describe a software middleware architecture and implementation that allows fine-grained access control to the MMSDB at a dataset, table, and row level. Result sets from MMSDB queries issued in the client portal are filtered with the use of a policy enforcement proxy, with minimal changes to the existing client software and database. Before resulting data is returned to the client, policies are evaluated to determine if the user or role is authorized to access the data. Policies can be authored to filter data at the row, table or column level of a result set. The system uses various technologies developed in the International Technology Alliance in Network and Information Science (ITA) for policy-controlled information sharing and dissemination1. Use of the Policy Management Library provides a mechanism for the management and evaluation of policies to support finer grained access to the data in the MMSDB system. The GaianDB is a policy-enabled, federated database that acts as a proxy between the client application and the MMSDB system.

  2. Knowledge production status of Iranian researchers in the gastric cancer area: based on the medline database.

    Science.gov (United States)

    Ghojazadeh, Morteza; Naghavi-Behzad, Mohammad; Nasrolah-Zadeh, Raheleh; Bayat-Khajeh, Parvaneh; Piri, Reza; Mirnia, Keyvan; Azami-Aghdash, Saber

    2014-01-01

    Scientometrics is a useful method for management of financial and human resources and has been applied many times in medical sciences during recent years. The aim of this study was to investigate the status of science production by Iranian scientists in the gastric cancer field based on the Medline database. In this descriptive-cross sectional study Iranian science production concerning gastric cancer during 2000-2011 was investigated based on Medline. After two stages of searching, 121 articles were found, then we reviewed publication date, authors names, journal title, impact factor (IF), and cooperation coefficient between researchers. SPSS.19 was used for statistical analysis. There was a significant increase in published articles about gastric cancer by Iranian researchers in Medline database during 2006-2011. Mean cooperation coefficient between researchers was 6.14±3.29 person per article. Articles of this field were published in 19 countries and 56 journals. Those basex in Thailand, England, and America had the most published Iranian articles. Tehran University of Medical Sciences and Mohammadreza Zali had the most outstanding role in publishing scientific articles. According to results of this study, improving cooperation of researchers in conducting research and scientometric studies about other fields may have an important role in increasing both quality and quantity of published studies.

  3. Open-access MIMIC-II database for intensive care research.

    Science.gov (United States)

    Lee, Joon; Scott, Daniel J; Villarroel, Mauricio; Clifford, Gari D; Saeed, Mohammed; Mark, Roger G

    2011-01-01

    The critical state of intensive care unit (ICU) patients demands close monitoring, and as a result a large volume of multi-parameter data is collected continuously. This represents a unique opportunity for researchers interested in clinical data mining. We sought to foster a more transparent and efficient intensive care research community by building a publicly available ICU database, namely Multiparameter Intelligent Monitoring in Intensive Care II (MIMIC-II). The data harnessed in MIMIC-II were collected from the ICUs of Beth Israel Deaconess Medical Center from 2001 to 2008 and represent 26,870 adult hospital admissions (version 2.6). MIMIC-II consists of two major components: clinical data and physiological waveforms. The clinical data, which include patient demographics, intravenous medication drip rates, and laboratory test results, were organized into a relational database. The physiological waveforms, including 125 Hz signals recorded at bedside and corresponding vital signs, were stored in an open-source format. MIMIC-II data were also deidentified in order to remove protected health information. Any interested researcher can gain access to MIMIC-II free of charge after signing a data use agreement and completing human subjects training. MIMIC-II can support a wide variety of research studies, ranging from the development of clinical decision support algorithms to retrospective clinical studies. We anticipate that MIMIC-II will be an invaluable resource for intensive care research by stimulating fair comparisons among different studies.

  4. The long term effects of early analysis of a trauma registry

    Directory of Open Access Journals (Sweden)

    Ashour Mazen

    2009-01-01

    Full Text Available Abstract Background We established a trauma registry in 2003 to collect data on trauma patients, which is a major cause of death in the United Arab Emirates (UAE. The aim of this paper is to report on the long term effects of our early analysis of this registry. Methods Data in the early stages of this trauma registry were collected for 503 patients during a period of 6 months in 2003. Data was collected on a paper form and then entered into the trauma registry using a self-developed Access database. Descriptive analysis was performed. Results Most were males (87%, the mean age (SD was 30.5 (14.9. UAE citizens formed 18.5%. Road traffic collisions caused an overwhelming 34.2% of injuries with 29.7% of those involving UAE citizens while work-related injuries were 26.2%. The early analysis of this registry had two major impacts. Firstly, the alarmingly high rate of UAE nationals in road traffic collisions standardized to the population led to major concerns and to the development of a specialized road traffic collision registry three years later. Second, the equally alarming high rate of work-related injuries led to collaboration with a Preventive Medicine team who helped with refining data elements of the trauma registry to include data important for research in trauma prevention. Conclusion Analysis of a trauma registry as early as six months can lead to useful information which has long term effects on the progress of trauma research and prevention.

  5. A database for reproducible manipulation research: CapriDB – Capture, Print, Innovate

    Directory of Open Access Journals (Sweden)

    Florian T. Pokorny

    2017-04-01

    Full Text Available We present a novel approach and database which combines the inexpensive generation of 3D object models via monocular or RGB-D camera images with 3D printing and a state of the art object tracking algorithm. Unlike recent efforts towards the creation of 3D object databases for robotics, our approach does not require expensive and controlled 3D scanning setups and aims to enable anyone with a camera to scan, print and track complex objects for manipulation research. The proposed approach results in detailed textured mesh models whose 3D printed replicas provide close approximations of the originals. A key motivation for utilizing 3D printed objects is the ability to precisely control and vary object properties such as the size, material properties and mass distribution in the 3D printing process to obtain reproducible conditions for robotic manipulation research. We present CapriDB – an extensible database resulting from this approach containing initially 40 textured and 3D printable mesh models together with tracking features to facilitate the adoption of the proposed approach.

  6. Computer-Aided Systems Engineering for Flight Research Projects Using a Workgroup Database

    Science.gov (United States)

    Mizukami, Masahi

    2004-01-01

    An online systems engineering tool for flight research projects has been developed through the use of a workgroup database. Capabilities are implemented for typical flight research systems engineering needs in document library, configuration control, hazard analysis, hardware database, requirements management, action item tracking, project team information, and technical performance metrics. Repetitive tasks are automated to reduce workload and errors. Current data and documents are instantly available online and can be worked on collaboratively. Existing forms and conventional processes are used, rather than inventing or changing processes to fit the tool. An integrated tool set offers advantages by automatically cross-referencing data, minimizing redundant data entry, and reducing the number of programs that must be learned. With a simplified approach, significant improvements are attained over existing capabilities for minimal cost. By using a workgroup-level database platform, personnel most directly involved in the project can develop, modify, and maintain the system, thereby saving time and money. As a pilot project, the system has been used to support an in-house flight experiment. Options are proposed for developing and deploying this type of tool on a more extensive basis.

  7. Human health risk assessment database, "the NHSRC toxicity value database": supporting the risk assessment process at US EPA's National Homeland Security Research Center.

    Science.gov (United States)

    Moudgal, Chandrika J; Garrahan, Kevin; Brady-Roberts, Eletha; Gavrelis, Naida; Arbogast, Michelle; Dun, Sarah

    2008-11-15

    The toxicity value database of the United States Environmental Protection Agency's (EPA) National Homeland Security Research Center has been in development since 2004. The toxicity value database includes a compilation of agent property, toxicity, dose-response, and health effects data for 96 agents: 84 chemical and radiological agents and 12 biotoxins. The database is populated with multiple toxicity benchmark values and agent property information from secondary sources, with web links to the secondary sources, where available. A selected set of primary literature citations and associated dose-response data are also included. The toxicity value database offers a powerful means to quickly and efficiently gather pertinent toxicity and dose-response data for a number of agents that are of concern to the nation's security. This database, in conjunction with other tools, will play an important role in understanding human health risks, and will provide a means for risk assessors and managers to make quick and informed decisions on the potential health risks and determine appropriate responses (e.g., cleanup) to agent release. A final, stand alone MS ACESSS working version of the toxicity value database was completed in November, 2007.

  8. Human health risk assessment database, 'the NHSRC toxicity value database': Supporting the risk assessment process at US EPA's National Homeland Security Research Center

    International Nuclear Information System (INIS)

    Moudgal, Chandrika J.; Garrahan, Kevin; Brady-Roberts, Eletha; Gavrelis, Naida; Arbogast, Michelle; Dun, Sarah

    2008-01-01

    The toxicity value database of the United States Environmental Protection Agency's (EPA) National Homeland Security Research Center has been in development since 2004. The toxicity value database includes a compilation of agent property, toxicity, dose-response, and health effects data for 96 agents: 84 chemical and radiological agents and 12 biotoxins. The database is populated with multiple toxicity benchmark values and agent property information from secondary sources, with web links to the secondary sources, where available. A selected set of primary literature citations and associated dose-response data are also included. The toxicity value database offers a powerful means to quickly and efficiently gather pertinent toxicity and dose-response data for a number of agents that are of concern to the nation's security. This database, in conjunction with other tools, will play an important role in understanding human health risks, and will provide a means for risk assessors and managers to make quick and informed decisions on the potential health risks and determine appropriate responses (e.g., cleanup) to agent release. A final, stand alone MS ACESSS working version of the toxicity value database was completed in November, 2007

  9. Medical research using governments' health claims databases: with or without patients' consent?

    Science.gov (United States)

    Tsai, Feng-Jen; Junod, Valérie

    2018-03-01

    Taking advantage of its single-payer, universal insurance system, Taiwan has leveraged its exhaustive database of health claims data for research purposes. Researchers can apply to receive access to pseudonymized (coded) medical data about insured patients, notably their diagnoses, health status and treatments. In view of the strict safeguards implemented, the Taiwanese government considers that this research use does not require patients' consent (either in the form of an opt-in or in the form of an opt-out). A group of non-governmental organizations has challenged this view in the Taiwanese Courts, but to no avail. The present article reviews the arguments both against and in favor of patients' consent for re-use of their data in research. It concludes that offering patients an opt-out would be appropriate as it would best balance the important interests at issue.

  10. Evolution of primary care databases in UK: a scientometric analysis of research output.

    Science.gov (United States)

    Vezyridis, Paraskevas; Timmons, Stephen

    2016-10-11

    To identify publication and citation trends, most productive institutions and countries, top journals, most cited articles and authorship networks from articles that used and analysed data from primary care databases (CPRD, THIN, QResearch) of pseudonymised electronic health records (EHRs) in UK. Descriptive statistics and scientometric tools were used to analyse a SCOPUS data set of 1891 articles. Open access software was used to extract networks from the data set (Table2Net), visualise and analyse coauthorship networks of scholars and countries (Gephi) and density maps (VOSviewer) of research topics co-occurrence and journal cocitation. Research output increased overall at a yearly rate of 18.65%. While medicine is the main field of research, studies in more specialised areas include biochemistry and pharmacology. Researchers from UK, USA and Spanish institutions have published the most papers. Most of the journals that publish this type of research and most cited papers come from UK and USA. Authorship varied between 3 and 6 authors. Keyword analyses show that smoking, diabetes, cardiovascular diseases and mental illnesses, as well as medication that can treat such medical conditions, such as non-steroid anti-inflammatory agents, insulin and antidepressants constitute the main topics of research. Coauthorship network analyses show that lead scientists, directors or founders of these databases are, to various degrees, at the centre of clusters in this scientific community. There is a considerable increase of publications in primary care research from EHRs. The UK has been well placed at the centre of an expanding global scientific community, facilitating international collaborations and bringing together international expertise in medicine, biochemical and pharmaceutical research. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  11. The virtual microscopy database-sharing digital microscope images for research and education.

    Science.gov (United States)

    Lee, Lisa M J; Goldman, Haviva M; Hortsch, Michael

    2018-02-14

    Over the last 20 years, virtual microscopy has become the predominant modus of teaching the structural organization of cells, tissues, and organs, replacing the use of optical microscopes and glass slides in a traditional histology or pathology laboratory setting. Although virtual microscopy image files can easily be duplicated, creating them requires not only quality histological glass slides but also an expensive whole slide microscopic scanner and massive data storage devices. These resources are not available to all educators and researchers, especially at new institutions in developing countries. This leaves many schools without access to virtual microscopy resources. The Virtual Microscopy Database (VMD) is a new resource established to address this problem. It is a virtual image file-sharing website that allows researchers and educators easy access to a large repository of virtual histology and pathology image files. With the support from the American Association of Anatomists (Bethesda, MD) and MBF Bioscience Inc. (Williston, VT), registration and use of the VMD are currently free of charge. However, the VMD site is restricted to faculty and staff of research and educational institutions. Virtual Microscopy Database users can upload their own collection of virtual slide files, as well as view and download image files for their own non-profit educational and research purposes that have been deposited by other VMD clients. Anat Sci Educ. © 2018 American Association of Anatomists. © 2018 American Association of Anatomists.

  12. Secondary analysis of a marketing research database reveals patterns in dairy product purchases over time.

    Science.gov (United States)

    Van Wave, Timothy W; Decker, Michael

    2003-04-01

    Development of a method using marketing research data to assess food purchase behavior and consequent nutrient availability for purposes of nutrition surveillance, evaluation of intervention effects, and epidemiologic studies of diet-health relationships. Data collected on household food purchases accrued over a 13-week period were selected by using Universal Product Code numbers and household characteristics from a marketing research database. Universal Product Code numbers for 39,408 dairy product purchases were linked to a standard reference for food composition to estimate the nutrient content of foods purchased over time. Two thousand one hundred sixty-one households located in Victoria, Texas, and surrounding communities who were active members of a frequent shopper program. Demographic characteristics of sample households and the nutrient content of their dairy product purchases were analyzed using frequency distribution, cross tabulation, analysis of variance, and t test procedures. A method for using marketing research data was successfully used to estimate household purchases of specific foods and their nutrient content from a marketing database containing hundreds of thousands of records. Distribution of dairy product purchases and their concomitant nutrients between Hispanic and non-Hispanic households were significant (P<.01, P<.001, respectively) and sustained over time. Purchase records from large, nationally representative panels of shoppers, such as those maintained by major market research companies, might be used to accomplish detailed longitudinal epidemiologic studies or surveillance of national food- and nutrient-purchasing patterns within and between countries and segments of their respective populations.

  13. Identifying potentially eligible subjects for research: paper-based logs versus the hospital administrative database.

    Science.gov (United States)

    Magee, L A; Massey, K; von Dadelszen, P; Fazio, M; Payne, B; Liston, R

    2011-12-01

    The Canadian Perinatal Network (CPN) is a national database focused on threatened very pre-term birth. Women with one or more conditions most commonly associated with very pre-term birth are included if admitted to a participating tertiary perinatal unit at 22 weeks and 0 days to 28 weeks and 6 days. At BC Women's Hospital and Health Centre, we compared traditional paper-based ward logs and a search of the Canadian Institute for Health Information (CIHI) electronic database of inpatient discharges to identify patients. The study identified 244 women potentially eligible for inclusion in the CPN admitted between April and December 2007. Of the 155 eligible women entered into the CPN database, each method identified a similar number of unique records (142 and 147) not ascertained by the other: 10 (6.4%) by CIHI search and 5 (3.2%) by ward log review. However, CIHI search achieved these results after reviewing fewer records (206 vs. 223) in less time (0.67 vs. 13.6 hours for ward logs). Either method is appropriate for identification of potential research subjects using gestational age criteria. Although electronic methods are less time-consuming, they cannot be performed until after the patient is discharged and records and charts are reviewed. Each method's advantages and disadvantages will dictate use for a specific project.

  14. FmMDb: a versatile database of foxtail millet markers for millets and bioenergy grasses research.

    Directory of Open Access Journals (Sweden)

    Venkata Suresh B

    Full Text Available The prominent attributes of foxtail millet (Setaria italica L. including its small genome size, short life cycle, inbreeding nature, and phylogenetic proximity to various biofuel crops have made this crop an excellent model system to investigate various aspects of architectural, evolutionary and physiological significances in Panicoid bioenergy grasses. After release of its whole genome sequence, large-scale genomic resources in terms of molecular markers were generated for the improvement of both foxtail millet and its related species. Hence it is now essential to congregate, curate and make available these genomic resources for the benefit of researchers and breeders working towards crop improvement. In view of this, we have constructed the Foxtail millet Marker Database (FmMDb; http://www.nipgr.res.in/foxtail.html, a comprehensive online database for information retrieval, visualization and management of large-scale marker datasets with unrestricted public access. FmMDb is the first database which provides complete marker information to the plant science community attempting to produce elite cultivars of millet and bioenergy grass species, thus addressing global food insecurity.

  15. SeqHound: biological sequence and structure database as a platform for bioinformatics research

    Directory of Open Access Journals (Sweden)

    Dumontier Michel

    2002-10-01

    Full Text Available Abstract Background SeqHound has been developed as an integrated biological sequence, taxonomy, annotation and 3-D structure database system. It provides a high-performance server platform for bioinformatics research in a locally-hosted environment. Results SeqHound is based on the National Center for Biotechnology Information data model and programming tools. It offers daily updated contents of all Entrez sequence databases in addition to 3-D structural data and information about sequence redundancies, sequence neighbours, taxonomy, complete genomes, functional annotation including Gene Ontology terms and literature links to PubMed. SeqHound is accessible via a web server through a Perl, C or C++ remote API or an optimized local API. It provides functionality necessary to retrieve specialized subsets of sequences, structures and structural domains. Sequences may be retrieved in FASTA, GenBank, ASN.1 and XML formats. Structures are available in ASN.1, XML and PDB formats. Emphasis has been placed on complete genomes, taxonomy, domain and functional annotation as well as 3-D structural functionality in the API, while fielded text indexing functionality remains under development. SeqHound also offers a streamlined WWW interface for simple web-user queries. Conclusions The system has proven useful in several published bioinformatics projects such as the BIND database and offers a cost-effective infrastructure for research. SeqHound will continue to develop and be provided as a service of the Blueprint Initiative at the Samuel Lunenfeld Research Institute. The source code and examples are available under the terms of the GNU public license at the Sourceforge site http://sourceforge.net/projects/slritools/ in the SLRI Toolkit.

  16. From Population Databases to Research and Informed Health Decisions and Policy.

    Science.gov (United States)

    Machluf, Yossy; Tal, Orna; Navon, Amir; Chaiter, Yoram

    2017-01-01

    In the era of big data, the medical community is inspired to maximize the utilization and processing of the rapidly expanding medical datasets for clinical-related and policy-driven research. This requires a medical database that can be aggregated, interpreted, and integrated at both the individual and population levels. Policymakers seek data as a lever for wise, evidence-based decision-making and information-driven policy. Yet, bridging the gap between data collection, research, and policymaking, is a major challenge. To bridge this gap, we propose a four-step model: (A) creating a conjoined task force of all relevant parties to declare a national program to promote collaborations; (B) promoting a national digital records project, or at least a network of synchronized and integrated databases, in an accessible transparent manner; (C) creating an interoperative national research environment to enable the analysis of the organized and integrated data and to generate evidence; and (D) utilizing the evidence to improve decision-making, to support a wisely chosen national policy. For the latter purpose, we also developed a novel multidimensional set of criteria to illuminate insights and estimate the risk for future morbidity based on current medical conditions. Used by policymakers, providers of health plans, caregivers, and health organizations, we presume this model will assist transforming evidence generation to support the design of health policy and programs, as well as improved decision-making about health and health care, at all levels: individual, communal, organizational, and national.

  17. The Government Finance Database: A Common Resource for Quantitative Research in Public Financial Analysis.

    Science.gov (United States)

    Pierson, Kawika; Hand, Michael L; Thompson, Fred

    2015-01-01

    Quantitative public financial management research focused on local governments is limited by the absence of a common database for empirical analysis. While the U.S. Census Bureau distributes government finance data that some scholars have utilized, the arduous process of collecting, interpreting, and organizing the data has led its adoption to be prohibitive and inconsistent. In this article we offer a single, coherent resource that contains all of the government financial data from 1967-2012, uses easy to understand natural-language variable names, and will be extended when new data is available.

  18. Analysis and visualization of disease courses in a semantically-enabled cancer registry.

    Science.gov (United States)

    Esteban-Gil, Angel; Fernández-Breis, Jesualdo Tomás; Boeker, Martin

    2017-09-29

    Regional and epidemiological cancer registries are important for cancer research and the quality management of cancer treatment. Many technological solutions are available to collect and analyse data for cancer registries nowadays. However, the lack of a well-defined common semantic model is a problem when user-defined analyses and data linking to external resources are required. The objectives of this study are: (1) design of a semantic model for local cancer registries; (2) development of a semantically-enabled cancer registry based on this model; and (3) semantic exploitation of the cancer registry for analysing and visualising disease courses. Our proposal is based on our previous results and experience working with semantic technologies. Data stored in a cancer registry database were transformed into RDF employing a process driven by OWL ontologies. The semantic representation of the data was then processed to extract semantic patient profiles, which were exploited by means of SPARQL queries to identify groups of similar patients and to analyse the disease timelines of patients. Based on the requirements analysis, we have produced a draft of an ontology that models the semantics of a local cancer registry in a pragmatic extensible way. We have implemented a Semantic Web platform that allows transforming and storing data from cancer registries in RDF. This platform also permits users to formulate incremental user-defined queries through a graphical user interface. The query results can be displayed in several customisable ways. The complex disease timelines of individual patients can be clearly represented. Different events, e.g. different therapies and disease courses, are presented according to their temporal and causal relations. The presented platform is an example of the parallel development of ontologies and applications that take advantage of semantic web technologies in the medical field. The semantic structure of the representation renders it easy to

  19. Consumer attitudes towards the establishment of a national Australian familial cancer research database by the Inherited Cancer Connect (ICCon) Partnership.

    Science.gov (United States)

    Forrest, Laura; Mitchell, Gillian; Thrupp, Letitia; Petelin, Lara; Richardson, Kate; Mascarenhas, Lyon; Young, Mary-Anne

    2018-01-01

    Clinical genetics units hold large amounts of information which could be utilised to benefit patients and their families. In Australia, a national research database, the Inherited Cancer Connect (ICCon) database, is being established that comprises clinical genetic data held for all carriers of mutations in cancer predisposition genes. Consumer input was sought to establish the acceptability of the inclusion of clinical genetic data into a research database. A qualitative approach using a modified nominal group technique was used to collect data through consumer forums conducted in three Australian states. Individuals who had previously received care from Familial Cancer Centres were invited to participate. Twenty-four consumers participated in three forums. Participants expressed positive attitudes about the establishment of the ICCon database, which were informed by the perceived benefits of the database including improved health outcomes for individuals with inherited cancer syndromes. Most participants were comfortable to waive consent for their clinical information to be included in the research database in a de-identified format. As major stakeholders, consumers have an integral role in contributing to the development and conduct of the ICCon database. As an initial step in the development of the ICCon database, the forums demonstrated consumers' acceptance of important aspects of the database including waiver of consent.

  20. Fiscal 1997 research report. Basic research project on improving energy consumption efficiency in developing countries (Database construction); 1998 nendo hatten tojokoku energy shohi koritsuka kiso chosa jigyo hokokusho. Database kochiku jigyo

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1999-09-01

    The New Energy and Industrial Technology Development Organization (NEDO) in fiscal 1993 started a database construction project, which involves energy conservation related primary information on the 11 countries concerned, for encouraging 11 Asian countries, namely, Japan, China, Indonesia, the Philippines, Thailand, Malaysia, Taiwan, Korea, Vietnam, Myanmar, and Pakistan, to promote their energy conservation endeavors. As part of the database construction effort under this research project, the so-far accomplished collection of and analysis into energy related information about the countries, surveys of the utilization and popularization of databases, and development of database systems are taken into consideration. On the basis of these efforts to improve on the database systems for enhanced operability, a program is formulated for database diffusion under which data are collected and updated for storage in databases. Also exerted under the program are endeavors to make use of the above-said database systems and to disseminate the constructed databases into the 11 countries for effective utilization. In the future, it is desired that the NEDO database will win popularity in the 11 countries and be utilized in their formulation of domestic energy conservation policies. (NEDO)

  1. Facility Registry Service (FRS)

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) provides an integrated source of comprehensive (air, water, and waste) environmental information about facilities across EPA,...

  2. The Danish National Chronic Myeloid Neoplasia Registry

    Directory of Open Access Journals (Sweden)

    Bak M

    2016-10-01

    Full Text Available Marie Bak,1 Else Helene Ibfelt,2 Thomas Stauffer Larsen,3 Dorthe Rønnov-Jessen,4 Niels Pallisgaard,5 Ann Madelung,6 Lene Udby,1 Hans Carl Hasselbalch,1 Ole Weis Bjerrum,7 Christen Lykkegaard Andersen1,7 1Department of Hematology, Zealand University Hospital, University of Copenhagen, Roskilde, 2Research Centre for Prevention and Health, Rigshospitalet Glostrup, University of Copenhagen, Glostrup, 3Department of Hematology, Odense University Hospital, Odense, 4Department of Hematology, Vejle Hospital, Vejle, 5Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Roskilde, 6Department of Surgical Pathology, Zealand University Hospital, University of Copenhagen, Næstved, 7Department of Hematology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark Aim: The Danish National Chronic Myeloid Neoplasia Registry (DCMR is a population-based clinical quality database, introduced to evaluate diagnosis and treatment of patients with chronic myeloid malignancies. The aim is to monitor the clinical quality at the national, regional, and hospital departmental levels and serve as a platform for research. Study population: The DCMR has nationwide coverage and contains information on patients diagnosed at hematology departments from January 2010 onward, including patients with essential thrombocythemia, polycythemia vera, myelofibrosis, unclassifiable myeloproliferative neoplasms, chronic myelomonocytic leukemia, and chronic myeloid leukemia. Main variables: Data are collected using standardized registration forms (so far up to four forms per patient, which are consecutively filled out online at time of diagnosis, after 2-year and 5-year follow-ups, and at end of follow-up. The forms include variables that describe clinical/paraclinical assessments, treatment, disease progression, and survival – disease-specific variables – as well as variables that are identical for all chronic myeloid malignancies. Descriptive

  3. The Danish Heart Failure Registry

    DEFF Research Database (Denmark)

    Schjødt, Inge; Nakano, Anne; Egstrup, Kenneth

    2016-01-01

    AIM OF DATABASE: The aim of the Danish Heart Failure Registry (DHFR) is to monitor and improve the care of patients with incident heart failure (HF) in Denmark. STUDY POPULATION: The DHFR includes inpatients and outpatients (≥18 years) with incident HF. Reporting to the DHFR is mandatory......: The main variables recorded in the DHFR are related to the indicators for quality of care in patients with incident HF: performance of echocardiography, functional capacity (New York Heart Association functional classification), pharmacological therapy (angiotensin converting enzyme/angiotensin II...

  4. Scientific Research Database of the 2008 Ms8.0 Wenchuan Earthquake

    Science.gov (United States)

    Liang, C.; Yang, Y.; Yu, Y.

    2013-12-01

    Nearly 5 years after the 2008 Ms8.0 Wenchuan Earthquake, the Ms7.0 Lushan earthquake stroke 70km away along the same fault system. Given the tremendous life loss and property damages as well as the short time and distance intervals between the two large magnitude events, the scientific probing into their causing factors and future seismic activities in the nearby region will continue to be in the center of earthquake research in China and even the world for years to come. In the past five years, scientists have made significant efforts to study the Wenchuan earthquake from various aspects using different datasets and methods. Their studies cover a variety of topics including seismogenic environment, earthquake precursors, rupture process, co-seismic phenomenon, hazard relief, reservoir induced seismicity and more. These studies have been published in numerous journals in Chinese, English and many other languages. In addition, 54 books regarding to this earthquake have been published. The extremely diversified nature of all publications makes it very difficult and time-consuming, if not impossible, to sort out information needed by individual researcher in an efficient way. An information platform that collects relevant scientific information and makes them accessible in various ways can be very handy. With this mission in mind, the Earthquake Research Group in the Chengdu University of Technology has developed a website www.wceq.org to attack this target: (1) articles published by major journals and books are recorded into a database. Researchers will be able to find articles by topics, journals, publication dates, authors and keywords e.t.c by a few clicks; (2) to fast track the latest developments, researchers can also follow upon updates in the current month, last 90days, 180 days and 365 days by clicking on corresponding links; (3) the modern communication tools such as Facebook, Twitter and their Chinese counterparts are accommodated in this site to share

  5. The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

    Directory of Open Access Journals (Sweden)

    Christopher J. Ryerson

    2016-01-01

    Full Text Available Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1 describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2 determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.

  6. National Database for Autism Research (NDAR): Big Data Opportunities for Health Services Research and Health Technology Assessment.

    Science.gov (United States)

    Payakachat, Nalin; Tilford, J Mick; Ungar, Wendy J

    2016-02-01

    The National Database for Autism Research (NDAR) is a US National Institutes of Health (NIH)-funded research data repository created by integrating heterogeneous datasets through data sharing agreements between autism researchers and the NIH. To date, NDAR is considered the largest neuroscience and genomic data repository for autism research. In addition to biomedical data, NDAR contains a large collection of clinical and behavioral assessments and health outcomes from novel interventions. Importantly, NDAR has a global unique patient identifier that can be linked to aggregated individual-level data for hypothesis generation and testing, and for replicating research findings. As such, NDAR promotes collaboration and maximizes public investment in the original data collection. As screening and diagnostic technologies as well as interventions for children with autism are expensive, health services research (HSR) and health technology assessment (HTA) are needed to generate more evidence to facilitate implementation when warranted. This article describes NDAR and explains its value to health services researchers and decision scientists interested in autism and other mental health conditions. We provide a description of the scope and structure of NDAR and illustrate how data are likely to grow over time and become available for HSR and HTA.

  7. Construction of a bibliographic information database and development of retrieval system for research reports in nuclear science and technology (II)

    International Nuclear Information System (INIS)

    Han, Duk Haeng; Kim, Tae Whan; Choi, Kwang; Yoo, An Na; Keum, Jong Yong; Kim, In Kwon

    1996-05-01

    The major goal of this project is to construct a bibliographic information database in nuclear engineering and to develop a prototype retrieval system. To give an easy access to microfiche research report, this project has accomplished the construction of microfiche research reports database and the development of retrieval system. The results of the project are as follows; 1. Microfiche research reports database was constructed by downloading from DOE Energy, NTIS, INIS. 2. The retrieval system was developed in host and web version using access point such as title, abstracts, keyword, report number. 6 tabs., 8 figs., 11 refs. (Author) .new

  8. Construction of a bibliographic information database and development of retrieval system for research reports in nuclear science and technology (II)

    Energy Technology Data Exchange (ETDEWEB)

    Han, Duk Haeng; Kim, Tae Whan; Choi, Kwang; Yoo, An Na; Keum, Jong Yong; Kim, In Kwon [Korea Atomic Energy Research Institute, Taejon (Korea, Republic of)

    1996-05-01

    The major goal of this project is to construct a bibliographic information database in nuclear engineering and to develop a prototype retrieval system. To give an easy access to microfiche research report, this project has accomplished the construction of microfiche research reports database and the development of retrieval system. The results of the project are as follows; 1. Microfiche research reports database was constructed by downloading from DOE Energy, NTIS, INIS. 2. The retrieval system was developed in host and web version using access point such as title, abstracts, keyword, report number. 6 tabs., 8 figs., 11 refs. (Author) .new.

  9. Clinical disease registries in acute myocardial infarction.

    Science.gov (United States)

    Ashrafi, Reza; Hussain, Hussain; Brisk, Robert; Boardman, Leanne; Weston, Clive

    2014-06-26

    Disease registries, containing systematic records of cases, have for nearly 100 years been valuable in exploring and understanding various aspects of cardiology. This is particularly true for myocardial infarction, where such registries have provided both epidemiological and clinical information that was not readily available from randomised controlled trials in highly-selected populations. Registries, whether mandated or voluntary, prospective or retrospective in their analysis, have at their core a common study population and common data definitions. In this review we highlight how registries have diversified to offer information on epidemiology, risk modelling, quality assurance/improvement and original research-through data mining, transnational comparisons and the facilitation of enrolment in, and follow-up during registry-based randomised clinical trials.

  10. The Contextual Database of the Generations and Gender Programme: Concept, content, and research examples

    Directory of Open Access Journals (Sweden)

    Arianna Caporali

    2016-08-01

    Full Text Available Background: Differences in demographic behaviours across countries and subnational regions have stimulated interest in studying the relationships between individual characteristics and the contexts in which individuals are embedded. Analytical approaches that include contextual indicators in statistical analyses of demographic behaviour need well-documented comparative data at the national and the subnational regional level. The Contextual Database (CDB of the Generations and Gender Programme (GGP; http://www.ggp-i.org/data/ggp-contextual-database supports such analyses by providing comparative data on demographic and socio-economic contexts in up to 60 countries in Europe, North America, Asia, and Oceania. Objective: This paper presents conceptual considerations and an overview of the content and the functionality of the CDB. Research examples illustrate how data from this database can increase the analytical potential of demographic analyses. Conclusions: The CDB is a state-of-the-art research tool that provides well-documented comparative data at the national and the subnational regional level. Although it is conceptually linked to the Generations and Gender Survey (GGS, it can also be used to analyse data from other surveys, to study macro developments, and for teaching and lecturing. The CDB has a number of valuable features. First, it has a large number of indicators specifically geared towards demographic analyses, which provide extensive temporal and geographic coverage. Second, its dynamic web environment provides a high degree of transparency on data sources, as it offers meta-data for each individual entry. Finally, the CDB supports geocoding schemes that are used by the GGS and other surveys to denote region and country of residence.

  11. Advances in Parallel Computing and Databases for Digital Pathology in Cancer Research

    Science.gov (United States)

    2016-11-13

    databases. The advent of NewSQL and NoSQL (Not Only SQL) databases has led to the development of new technologies that are well suited for applications... NoSQL graph databases are tuned to support graph operations and NoSQL key-value databases excel at rapid ingest of unstructured data. Recent NewSQL

  12. Food-pics: an image database for experimental research on eating and appetite.

    Science.gov (United States)

    Blechert, Jens; Meule, Adrian; Busch, Niko A; Ohla, Kathrin

    2014-01-01

    Our current environment is characterized by the omnipresence of food cues. The sight and smell of real foods, but also graphically depictions of appetizing foods, can guide our eating behavior, for example, by eliciting food craving and influencing food choice. The relevance of visual food cues on human information processing has been demonstrated by a growing body of studies employing food images across the disciplines of psychology, medicine, and neuroscience. However, currently used food image sets vary considerably across laboratories and image characteristics (contrast, brightness, etc.) and food composition (calories, macronutrients, etc.) are often unspecified. These factors might have contributed to some of the inconsistencies of this research. To remedy this, we developed food-pics, a picture database comprising 568 food images and 315 non-food images along with detailed meta-data. A total of N = 1988 individuals with large variance in age and weight from German speaking countries and North America provided normative ratings of valence, arousal, palatability, desire to eat, recognizability and visual complexity. Furthermore, data on macronutrients (g), energy density (kcal), and physical image characteristics (color composition, contrast, brightness, size, complexity) are provided. The food-pics image database is freely available under the creative commons license with the hope that the set will facilitate standardization and comparability across studies and advance experimental research on the determinants of eating behavior.

  13. Epidemiological considerations for the use of databases in transfusion research: a Scandinavian perspective.

    Science.gov (United States)

    Edgren, Gustaf; Hjalgrim, Henrik

    2010-11-01

    At current safety levels, with adverse events from transfusions being relatively rare, further progress in risk reductions will require large-scale investigations. Thus, truly prospective studies may prove unfeasible and other alternatives deserve consideration. In this review, we will try to give an overview of recent and historical developments in the use of blood donation and transfusion databases in research. In addition, we will go over important methodological issues. There are at least three nationwide or near-nationwide donation/transfusion databases with the possibility for long-term follow-up of donors and recipients. During the past few years, a large number of reports have been published utilizing such data sources to investigate transfusion-associated risks. In addition, numerous clinics systematically collect and use such data on a smaller scale. Combining systematically recorded donation and transfusion data with long-term health follow-up opens up exciting opportunities for transfusion medicine research. However, the correct analysis of such data requires close attention to methodological issues, especially including the indication for transfusion and reverse causality.

  14. Research on Construction of Road Network Database Based on Video Retrieval Technology

    Directory of Open Access Journals (Sweden)

    Wang Fengling

    2017-01-01

    Full Text Available Based on the characteristics of the video database and the basic structure of the video database and several typical video data models, the segmentation-based multi-level data model is used to describe the landscape information video database, the network database model and the road network management database system. Landscape information management system detailed design and implementation of a detailed preparation.

  15. The role of patent and non-patent databases in patent research in universities

    Science.gov (United States)

    Tolstaya, A. M.; Suslina, I. V.; Tolstaya, P. M.

    2017-01-01

    This studies deal with the description and systematization of the popular patent retrieval resources. The importance of the non-patent information when conducting patent research for the intellectual property created in educational and scientific activity of the university is highlighted. The differences in the patent and non-patent information are found out. Based on the databases` analysis the authors conducted the patent research on "Wireless endoscopic capsules" (development of the NRNU MEPhI). This study can be used to facilitate the university work on the new product development in order to improve the efficiency of the process of the commercialization of the intellectual activity results, including the entering the international market.

  16. Danish Gynecological Cancer Database

    DEFF Research Database (Denmark)

    Sørensen, Sarah Mejer; Bjørn, Signe Frahm; Jochumsen, Kirsten Marie

    2016-01-01

    AIM OF DATABASE: The Danish Gynecological Cancer Database (DGCD) is a nationwide clinical cancer database and its aim is to monitor the treatment quality of Danish gynecological cancer patients, and to generate data for scientific purposes. DGCD also records detailed data on the diagnostic measures...... data forms as follows: clinical data, surgery, pathology, pre- and postoperative care, complications, follow-up visits, and final quality check. DGCD is linked with additional data from the Danish "Pathology Registry", the "National Patient Registry", and the "Cause of Death Registry" using the unique...... Danish personal identification number (CPR number). DESCRIPTIVE DATA: Data from DGCD and registers are available online in the Statistical Analysis Software portal. The DGCD forms cover almost all possible clinical variables used to describe gynecological cancer courses. The only limitation...

  17. Dementia registries around the globe and their applications: A systematic review.

    Science.gov (United States)

    Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

    2017-09-01

    Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

  18. The quality of severe mental disorder diagnoses in a national health registry as compared to research diagnoses based on structured interview.

    Science.gov (United States)

    Nesvåg, Ragnar; Jönsson, Erik G; Bakken, Inger Johanne; Knudsen, Gun Peggy; Bjella, Thomas D; Reichborn-Kjennerud, Ted; Melle, Ingrid; Andreassen, Ole A

    2017-03-14

    Utilization of diagnostic information from national patient registries rests on the quality of the registered diagnoses. We aimed to investigate the agreement and consistency of diagnoses of psychotic and bipolar disorders in the Norwegian Patient Registry (NPR) compared to structured interview-based diagnoses given as part of a clinical research project. Diagnostic data from NPR were obtained for the period 01.01.2008-31.12.2013 for all patients who had been included in the Thematically Organized Psychosis (TOP) study between 18.10.2002 and 01.09.2014 with a Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) diagnosis of schizophrenia (n = 537), delusional disorder (n = 48), schizoaffective disorder (n = 118) or bipolar disorder (n = 408). Diagnostic agreement between the primary DSM-IV diagnosis in TOP and the International Classification of Diseases, 10th revision (ICD-10) diagnoses in NPR was evaluated using Cohen's unweighted nominal kappa (κ). Diagnostic consistency was calculated as the proportion of all registered severe mental disorder diagnoses in NPR that were equivalent to the primary diagnosis given in the TOP study. The proportion of patients registered with the equivalent ICD-10 diagnosis as the primary DSM-IV diagnosis given in TOP was 84.2% for the schizophrenia group, 68.8% for the delusional disorder group, 76.3% for the schizoaffective disorder group, and 78.4% for the bipolar disorder group. Diagnostic agreement was good for schizophrenia (κ = 0.74) and bipolar disorder (κ = 0.72), fair for schizoaffective disorder (κ = 0.63), and poor for delusional disorder (κ = 0.39). Among patients with DSM-IV schizophrenia, 4.7% were diagnosed with ICD-10 bipolar disorder, and among patients with DSM-IV bipolar disorder, 2.5% were diagnosed with ICD-10 schizophrenia. Diagnostic consistency was 84.9% for schizophrenia, 59.1% for delusional disorder, 65.9% for schizoaffective disorder, and 91

  19. EMI Registry Development Plan

    CERN Document Server

    Memon, S.; Szigeti, G.; Field, L.

    2012-01-01

    This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.

  20. The Qingdao Twin Registry

    DEFF Research Database (Denmark)

    Duan, Haiping; Ning, Feng; Zhang, Dongfeng

    2013-01-01

    In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of me...

  1. Segregation, Jim Crow, Racism, Embodied History & the People’s Health: Implications for Cancer Registries, Research & Prevention

    Science.gov (United States)

    Dr. Nancy Krieger is Professor of Social Epidemiology, in the Department of Social and Behavioral Sciences at the Harvard T.H. Chan School of Public Health and Director of the HSPH Interdisciplinary Concentration on Women, Gender, and Health.  She is an internationally recognized social epidemiologist, with a background in biochemistry, philosophy of science, and the history of public health, combined with over 30 years of activism linking issues involving social justice, science, and health.  In 2004, she became an ISI highly cited scientist (reaffirmed: 2015 ISI update), a group comprising “less than one-half of one percent of all publishing researchers,” and in 2013 was the recipient of the Wade Hampton Frost Award from the Epidemiology Section of the American Public Health Association; in 2015, she was awarded the American Cancer Society Clinical Research Professorship. Dr. Krieger’s work addresses three topics: (1) conceptual frameworks to understand, analyze, and improve the people’s health, including the ecosocial theory of disease distribution she has been developing since 1994 and its focus on embodiment and equity; (2) etiologic research on societal determinants of population health and health inequities; and (3) methodologic research on improving monitoring of health inequities.  She is author of Epidemiology and The People’s Health: Theory and Context (Oxford University Press, 2011), editor of Embodying Inequality: Epidemiologic Perspectives (Baywood Press, 2004) and co-editor, with Glen Margo, of AIDS: The Politics of Survival (Baywood Publishers, 1994), and, with Elizabeth Fee, of Women’s Health, Politics, and Power:  Essays on Sex/Gender, Medicine, and Public Health (Baywood Publishers, 1994).  In 1994, she co-founded, and still chairs, the Spirit of 1848 Caucus of the American Public Health Association, which is concerned with the links between social justice and public health.  Dr. Krieger received her PhD in Epidemiology from the

  2. The Danish Neuro-Oncology Registry

    Directory of Open Access Journals (Sweden)

    Hansen S

    2016-10-01

    Full Text Available Steinbjørn Hansen Department of Oncology, Odense University Hospital and Institute of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark Aim of database: The Danish Neuro-Oncology Registry (DNOR was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark. Study population: DNOR has registered clinical data on diagnostics and treatment of all adult patients diagnosed with glioma since January 1, 2009, which numbers approximately 400 patients each year. Main variables: The database contains information about symptoms, presurgical magnetic resonance imaging (MRI characteristics, performance status, surgical procedures, residual tumor on postsurgical MRI, postsurgical complications, diagnostic and histology codes, radiotherapy, and chemotherapy. Descriptive data: DNOR publishes annual reports on descriptive data. During the period of registration, postoperative MRI is performed in a higher proportion of the patients (Indicator II, and a higher proportion of patients have no residual tumor after surgical resection of the primary tumor (Indicator IV. Further data are available in the annual reports. The indicators reflect only minor elements of handling brain tumor patients. Another advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group. Conclusion: The establishment of DNOR has optimized the quality in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research. Keywords: brain neoplasms, brain cancer, glioma, clinical quality indicators

  3. The Danish Testicular Cancer database

    Directory of Open Access Journals (Sweden)

    Daugaard G

    2016-10-01

    Full Text Available Gedske Daugaard,1 Maria Gry Gundgaard Kier,1 Mikkel Bandak,1 Mette Saksø Mortensen,1 Heidi Larsson,2 Mette Søgaard,2 Birgitte Groenkaer Toft,3 Birte Engvad,4 Mads Agerbæk,5 Niels Vilstrup Holm,6 Jakob Lauritsen1 1Department of Oncology 5073, Copenhagen University Hospital, Rigshospitalet, Copenhagen, 2Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, 3Department of Pathology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, 4Department of Pathology, Odense University Hospital, Odense, 5Department of Oncology, Aarhus University Hospital, Aarhus, 6Department of Oncology, Odense University Hospital, Odense, Denmark Aim: The nationwide Danish Testicular Cancer database consists of a retrospective research database (DaTeCa database and a prospective clinical database (Danish Multidisciplinary Cancer Group [DMCG] DaTeCa database. The aim is to improve the quality of care for patients with testicular cancer (TC in Denmark, that is, by identifying risk factors for relapse, toxicity related to treatment, and focusing on late effects. Study population: All Danish male patients with a histologically verified germ cell cancer diagnosis in the Danish Pathology Registry are included in the DaTeCa databases. Data collection has been performed from 1984 to 2007 and from 2013 onward, respectively. Main variables and descriptive data: The retrospective DaTeCa database contains detailed information with more than 300 variables related to histology, stage, treatment, relapses, pathology, tumor markers, kidney function, lung function, etc. A questionnaire related to late effects has been conducted, which includes questions regarding social relationships, life situation, general health status, family background, diseases, symptoms, use of medication, marital status, psychosocial issues, fertility, and sexuality. TC survivors alive on October 2014 were invited to fill in this questionnaire including 160 validated questions

  4. From Population Databases to Research and Informed Health Decisions and Policy

    Directory of Open Access Journals (Sweden)

    Yossy Machluf

    2017-09-01

    Full Text Available BackgroundIn the era of big data, the medical community is inspired to maximize the utilization and processing of the rapidly expanding medical datasets for clinical-related and policy-driven research. This requires a medical database that can be aggregated, interpreted, and integrated at both the individual and population levels. Policymakers seek data as a lever for wise, evidence-based decision-making and information-driven policy. Yet, bridging the gap between data collection, research, and policymaking, is a major challenge.The modelTo bridge this gap, we propose a four-step model: (A creating a conjoined task force of all relevant parties to declare a national program to promote collaborations; (B promoting a national digital records project, or at least a network of synchronized and integrated databases, in an accessible transparent manner; (C creating an interoperative national research environment to enable the analysis of the organized and integrated data and to generate evidence; and (D utilizing the evidence to improve decision-making, to support a wisely chosen national policy. For the latter purpose, we also developed a novel multidimensional set of criteria to illuminate insights and estimate the risk for future morbidity based on current medical conditions.ConclusionUsed by policymakers, providers of health plans, caregivers, and health organizations, we presume this model will assist transforming evidence generation to support the design of health policy and programs, as well as improved decision-making about health and health care, at all levels: individual, communal, organizational, and national.

  5. Fiscal 1998 research report. Construction model project of the human sensory database; 1998 nendo ningen kankaku database kochiku model jigyo seika hokokusho

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    2000-03-01

    This report summarizes the fiscal 1998 research result on construction of the human sensory database. The human sensory database for evaluating working environment was constructed on the basis of the measurement result on human sensory data (stress and fatigue) of 400 examinees at fields (transport field, control room and office) and in a laboratory. By using the newly developed standard measurement protocol for evaluating summer clothing (shirt, slacks and underwear), the database composed of the evaluation experiment results and the comparative experiment results on human physiological and sensory data of aged and young people was constructed. The database is featured by easy retrieval of various information concerned corresponding to requirements of tasks and use purposes. For evaluating the mass data with large time variation read corresponding to use purposes for every scene, the data detection support technique was adopted paying attention to physical and psychological variable phases, and mind and body events. A meaning of reaction and a hint for necessary measures are showed for every phase and event. (NEDO)

  6. Application of bioinformatics tools and databases in microbial dehalogenation research (a review).

    Science.gov (United States)

    Satpathy, R; Konkimalla, V B; Ratha, J

    2015-01-01

    Microbial dehalogenation is a biochemical process in which the halogenated substances are catalyzed enzymatically in to their non-halogenated form. The microorganisms have a wide range of organohalogen degradation ability both explicit and non-specific in nature. Most of these halogenated organic compounds being pollutants need to be remediated; therefore, the current approaches are to explore the potential of microbes at a molecular level for effective biodegradation of these substances. Several microorganisms with dehalogenation activity have been identified and characterized. In this aspect, the bioinformatics plays a key role to gain deeper knowledge in this field of dehalogenation. To facilitate the data mining, many tools have been developed to annotate these data from databases. Therefore, with the discovery of a microorganism one can predict a gene/protein, sequence analysis, can perform structural modelling, metabolic pathway analysis, biodegradation study and so on. This review highlights various methods of bioinformatics approach that describes the application of various databases and specific tools in the microbial dehalogenation fields with special focus on dehalogenase enzymes. Attempts have also been made to decipher some recent applications of in silico modeling methods that comprise of gene finding, protein modelling, Quantitative Structure Biodegradibility Relationship (QSBR) study and reconstruction of metabolic pathways employed in dehalogenation research area.

  7. Delivering research output to the user using ICT services: Marine contamination database web interface

    International Nuclear Information System (INIS)

    Abdul Muin Abdul Rahman; Abdul Khalik Wood; Zaleha Hashim; Burhanuddin Ahmad; Saaidi Ismail; Mohamad Safuan Sulaiman; Md Suhaimi Elias

    2010-01-01

    This project is about developing a web-based interface for accessing the Marine Contamination database records. The system contains of information pertaining to the occurrence of contaminants and natural elements in the marine eco-system based on samples taken at various locations within the shores of Malaysia in the form of sediment, seawater and marine biota. It represents a systematic approach for recording, storing and managing the vast amount of marine environmental data collected as output of the Marine Contamination and Transport Phenomena Research Project since 1990. The resultant collection of data is to form the background information (or baseline data) which could later be used to monitor the level of marine environmental pollutions around the country. Data collected from the various sampling and related laboratory activities are previously kept in conventional forms such as Excel worksheets and other documents, both in digital and/or paper form. With the help of modern database storage and retrieval techniques, the task of storage and retrieval of data has been made easier and manageable. It can also provide easy access to other parties who are interested in the data. (author)

  8. Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database.

    Science.gov (United States)

    Miller, Robert G; Anderson, Fred; Brooks, Benjamin Rix; Mitsumoto, Hiroshi; Bradley, Walter G; Ringel, Steven P

    2009-01-01

    To examine the care of patients with ALS following the publication of the standardized recommendations for the management of patients with amyotrophic lateral sclerosis (ALS) published in 1999 by the American Academy of Neurology. Specific aspects of ALS patient management have been evaluated serially using a national Amyotrophic Lateral Sclerosis Clinical Assessment, Research, and Education (ALS CARE) database to encourage compliance with these recommendations and to assure continuing quality improvement. The most recent analysis of 5,600 patients shows interesting epidemiological observations and treatment trends. Proper management of many ALS symptoms has increased substantially since the first publication of the guidelines, and awareness of pseudobulbar affect has increased. Other recommendations are underutilized: Only 9% undergo percutaneous endoscopic gastrostomy, although this procedure was recommended in 22% of patients; and noninvasive positive pressure ventilation was used by only 21% of patients despite being associated with improved 5-year survival rates. This observational database has been a useful tool in monitoring compliance with the standard of care for patients with ALS and may have resulted in greater adherence to guidelines.

  9. PlantDB – a versatile database for managing plant research

    Directory of Open Access Journals (Sweden)

    Gruissem Wilhelm

    2008-01-01

    Full Text Available Abstract Background Research in plant science laboratories often involves usage of many different species, cultivars, ecotypes, mutants, alleles or transgenic lines. This creates a great challenge to keep track of the identity of experimental plants and stored samples or seeds. Results Here, we describe PlantDB – a Microsoft® Office Access database – with a user-friendly front-end for managing information relevant for experimental plants. PlantDB can hold information about plants of different species, cultivars or genetic composition. Introduction of a concise identifier system allows easy generation of pedigree trees. In addition, all information about any experimental plant – from growth conditions and dates over extracted samples such as RNA to files containing images of the plants – can be linked unequivocally. Conclusion We have been using PlantDB for several years in our laboratory and found that it greatly facilitates access to relevant information.

  10. Developing a survey instrument to assess the readiness of primary care data, genetic and disease registries to conduct linked research: TRANSFoRm International Research Readiness (TIRRE survey instrument

    Directory of Open Access Journals (Sweden)

    Emily Leppenwell

    2013-05-01

    Full Text Available Background Clinical data are collected for routine care in family practice; there are also a growing number of genetic and cancer registry data repositories. The Translational Research and Patient Safety in Europe (TRANSFoRm project seeks to facilitate research using linked data from more than one source. We performed a requirements analysis which identified a wide range of data and business process requirements that need to be met before linking primary care and either genetic or disease registry data.Objectives To develop a survey to assess the readiness of data repositories to participate in linked research – the Transform International Research Readiness (TIRRE survey.Method We develop the questionnaire based on our requirement analysis; with questions at micro-, meso- and macro levels of granularity, study-specific questions about diabetes and gastro-oesophageal reflux disease (GORD, and research track record. The scope of the data required was extensive. We piloted this instrument, conducting ten preliminary telephone interviews to evaluate the response to the questionnaire.Results Using feedback gained from these interviews we revised the questionnaire; clarifying questions that were difficult to answer and utilising skip logic to create different series of questions for the various types of data repository. We simplified the questionnaire replacing free-text responses with yes/no or picking list options, wherever possible. We placed the final questionnaire online and encouraged its use (www.clininf.eu/jointirre/info.html.Conclusion Limited field testing suggests that TIRRE is capable of collecting comprehensive and relevant data about the suitability and readiness of data repositories to participate in linked data research.

  11. Pediatric Clinical Trials Conducted in South Korea from 2006 to 2015: An Analysis of the South Korean Clinical Research Information Service, US ClinicalTrials.gov and European Clinical Trials Registries.

    Science.gov (United States)

    Choi, Sheung-Nyoung; Lee, Ji-Hyun; Song, In-Kyung; Kim, Eun-Hee; Kim, Jin-Tae; Kim, Hee-Soo

    2017-12-01

    The status of pediatric clinical trials performed in South Korea in the last decade, including clinical trials of drugs with unapproved indications for children, has not been previously examined. The aim was to provide information regarding the current state of pediatric clinical trials and create a basis for future trials performed in South Korea by reviewing three databases of clinical trials registrations. We searched for pediatric clinical studies (participants South Korea between 2006 and 2015 registered on the Clinical Research Information Service (CRIS), ClinicalTrials.gov, and the European Clinical Trials Registry (EuCTR). Additionally, we reviewed whether unapproved indications were involved in each trial by comparing the trials with a list of authorized trials provided by the Ministry of Food and Drug Safety (MFDS). The primary and secondary outcomes were to determine the change in number of pediatric clinical trials with unapproved indications over time and to assess the status of unauthorized pediatric clinical trials from the MFDS and the publication of articles after these clinical trials, respectively. We identified 342 clinical studies registered in the CRIS (n = 81), ClinicalTrials.gov (n = 225), and EuCTR (n = 36), of which 306 were reviewed after excluding duplicate registrations. Among them, 181 studies were interventional trials dealing with drugs and biological agents, of which 129 (71.3%) involved unapproved drugs. Of these 129 trials, 107 (82.9%) were authorized by the MFDS. Pediatric clinical trials in South Korea aiming to establish the safety and efficacy of drugs in children are increasing; however, non-MFDS-authorized studies remain an issue.

  12. FishPathogens.eu a new database in the research of aquatic animal diseases

    DEFF Research Database (Denmark)

    Jonstrup, Søren Peter; Gray, T.; Olesen, Niels Jørgen

    Virus (KHV). The database design is based on freeware and could easily be implemented to include pathogens relevant for other species than fish. We present the database using the data on the different fish pathogens as example. However if some are interested in the platform we are happy to cooperate...... and share the database structure with other Epizone members....

  13. The Impact of Online Bibliographic Databases on Teaching and Research in Political Science.

    Science.gov (United States)

    Reichel, Mary

    The availability of online bibliographic databases greatly facilitates literature searching in political science. The advantages to searching databases online include combination of concepts, comprehensiveness, multiple database searching, free-text searching, currency, current awareness services, document delivery service, and convenience.…

  14. Creating a data exchange strategy for radiotherapy research: Towards federated databases and anonymised public datasets

    International Nuclear Information System (INIS)

    Skripcak, Tomas; Belka, Claus; Bosch, Walter; Brink, Carsten; Brunner, Thomas; Budach, Volker; Büttner, Daniel; Debus, Jürgen; Dekker, Andre; Grau, Cai; Gulliford, Sarah; Hurkmans, Coen; Just, Uwe

    2014-01-01

    Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate translational research in radiation therapy and oncology. The exchange of study data is one of the fundamental principles behind data aggregation and data mining. The possibilities of reproducing the original study results, performing further analyses on existing research data to generate new hypotheses or developing computational models to support medical decisions (e.g. risk/benefit analysis of treatment options) represent just a fraction of the potential benefits of medical data-pooling. Distributed machine learning and knowledge exchange from federated databases can be considered as one beyond other attractive approaches for knowledge generation within “Big Data”. Data interoperability between research institutions should be the major concern behind a wider collaboration. Information captured in electronic patient records (EPRs) and study case report forms (eCRFs), linked together with medical imaging and treatment planning data, are deemed to be fundamental elements for large multi-centre studies in the field of radiation therapy and oncology. To fully utilise the captured medical information, the study data have to be more than just an electronic version of a traditional (un-modifiable) paper CRF. Challenges that have to be addressed are data interoperability, utilisation of standards, data quality and privacy concerns, data ownership, rights to publish, data pooling architecture and storage. This paper discusses a framework for conceptual packages of ideas focused on a strategic development for international research data exchange in the field of radiation therapy and oncology

  15. Creating a data exchange strategy for radiotherapy research: towards federated databases and anonymised public datasets.

    Science.gov (United States)

    Skripcak, Tomas; Belka, Claus; Bosch, Walter; Brink, Carsten; Brunner, Thomas; Budach, Volker; Büttner, Daniel; Debus, Jürgen; Dekker, Andre; Grau, Cai; Gulliford, Sarah; Hurkmans, Coen; Just, Uwe; Krause, Mechthild; Lambin, Philippe; Langendijk, Johannes A; Lewensohn, Rolf; Lühr, Armin; Maingon, Philippe; Masucci, Michele; Niyazi, Maximilian; Poortmans, Philip; Simon, Monique; Schmidberger, Heinz; Spezi, Emiliano; Stuschke, Martin; Valentini, Vincenzo; Verheij, Marcel; Whitfield, Gillian; Zackrisson, Björn; Zips, Daniel; Baumann, Michael

    2014-12-01

    Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate translational research in radiation therapy and oncology. The exchange of study data is one of the fundamental principles behind data aggregation and data mining. The possibilities of reproducing the original study results, performing further analyses on existing research data to generate new hypotheses or developing computational models to support medical decisions (e.g. risk/benefit analysis of treatment options) represent just a fraction of the potential benefits of medical data-pooling. Distributed machine learning and knowledge exchange from federated databases can be considered as one beyond other attractive approaches for knowledge generation within "Big Data". Data interoperability between research institutions should be the major concern behind a wider collaboration. Information captured in electronic patient records (EPRs) and study case report forms (eCRFs), linked together with medical imaging and treatment planning data, are deemed to be fundamental elements for large multi-centre studies in the field of radiation therapy and oncology. To fully utilise the captured medical information, the study data have to be more than just an electronic version of a traditional (un-modifiable) paper CRF. Challenges that have to be addressed are data interoperability, utilisation of standards, data quality and privacy concerns, data ownership, rights to publish, data pooling architecture and storage. This paper discusses a framework for conceptual packages of ideas focused on a strategic development for international research data exchange in the field of radiation therapy and oncology. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

  16. Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management

    Science.gov (United States)

    Backus, Lisa I.; Gavrilov, Sergey; Loomis, Timothy P.; Halloran, James P.; Phillips, Barbara R.; Belperio, Pamela S.; Mole, Larry A.

    2009-01-01

    The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated. PMID:19717794

  17. Validation of Surgical Intensive Care-Infection Registry: a medical informatics system for intensive care unit research, quality of care improvement, and daily patient care.

    Science.gov (United States)

    Golob, Joseph F; Fadlalla, Adam M A; Kan, Justin A; Patel, Nilam P; Yowler, Charles J; Claridge, Jeffrey A

    2008-08-01

    We developed a prototype electronic clinical information system called the Surgical Intensive Care-Infection Registry (SIC-IR) to prospectively study infectious complications and monitor quality of care improvement programs in the surgical and trauma intensive care unit. The objective of this study was to validate SIC-IR as a successful health information technology with an accurate clinical data repository. Using the DeLone and McLean Model of Information Systems Success as a framework, we evaluated SIC-IR in a 3-month prospective crossover study of physician use in one of our two surgical and trauma intensive care units (SIC-IR unit versus non SIC-IR unit). Three simultaneous research methodologies were used: a user survey study, a pair of time-motion studies, and an accuracy study of SIC-IR's clinical data repository. The SIC-IR user survey results were positive for system reliability, graphic user interface, efficiency, and overall benefit to patient care. There was a significant decrease in prerounding time of nearly 4 minutes per patient on the SIC-IR unit compared with the non SIC-IR unit. The SIC-IR documentation and data archiving was accurate 74% to 100% of the time depending on the data entry method used. This accuracy was significantly improved compared with normal hand-written documentation on the non SIC-IR unit. SIC-IR proved to be a useful application both at individual user and organizational levels and will serve as an accurate tool to conduct prospective research and monitor quality of care improvement programs.

  18. Possibility of Database Research as a Means of Pharmacovigilance in Japan Based on a Comparison with Sertraline Postmarketing Surveillance.

    Science.gov (United States)

    Hirano, Yoko; Asami, Yuko; Kuribayashi, Kazuhiko; Kitazaki, Shigeru; Yamamoto, Yuji; Fujimoto, Yoko

    2018-05-01

    Many pharmacoepidemiologic studies using large-scale databases have recently been utilized to evaluate the safety and effectiveness of drugs in Western countries. In Japan, however, conventional methodology has been applied to postmarketing surveillance (PMS) to collect safety and effectiveness information on new drugs to meet regulatory requirements. Conventional PMS entails enormous costs and resources despite being an uncontrolled observational study method. This study is aimed at examining the possibility of database research as a more efficient pharmacovigilance approach by comparing a health care claims database and PMS with regard to the characteristics and safety profiles of sertraline-prescribed patients. The characteristics of sertraline-prescribed patients recorded in a large-scale Japanese health insurance claims database developed by MinaCare Co. Ltd. were scanned and compared with the PMS results. We also explored the possibility of detecting signals indicative of adverse reactions based on the claims database by using sequence symmetry analysis. Diabetes mellitus, hyperlipidemia, and hyperthyroidism served as exploratory events, and their detection criteria for the claims database were reported by the Pharmaceuticals and Medical Devices Agency in Japan. Most of the characteristics of sertraline-prescribed patients in the claims database did not differ markedly from those in the PMS. There was no tendency for higher risks of the exploratory events after exposure to sertraline, and this was consistent with sertraline's known safety profile. Our results support the concept of using database research as a cost-effective pharmacovigilance tool that is free of selection bias . Further investigation using database research is required to confirm our preliminary observations. Copyright © 2018. Published by Elsevier Inc.

  19. Survey on utilization of database for research and development of global environmental industry technology; Chikyu kankyo sangyo gijutsu kenkyu kaihatsu no tame no database nado no riyo ni kansuru chosa

    Energy Technology Data Exchange (ETDEWEB)

    1993-03-01

    To optimize networks and database systems for promotion of the industry technology development contributing to the solution of the global environmental problem, studies are made on reusable information resource and its utilization methods. As reusable information resource, there are external database and network system for researchers` information exchange and for computer use. The external database includes commercial database and academic database. As commercial database, 6 agents and 13 service systems are selected. As academic database, there are NACSIS-IR and the database which is connected with INTERNET in the U.S. These are used in connection with the UNIX academic research network called INTERNET. For connection with INTERNET, a commercial UNIX network service called IIJ which starts service in April 1993 can be used. However, personal computer communication network is used for the time being. 6 figs., 4 tabs.

  20. Data Element Registry Services

    Data.gov (United States)

    U.S. Environmental Protection Agency — Data Element Registry Services (DERS) is a resource for information about value lists (aka code sets / pick lists), data dictionaries, data elements, and EPA data...

  1. Danish Hip Arthroscopy Registry

    DEFF Research Database (Denmark)

    Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels

    2016-01-01

    Danish Hip Arthroscopy Registry (DHAR) was initiated in 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the epidemiologic and perioperative data of the first 2000 procedures in a Danish hip arthroscopy population and to describe the development of DHAR...... was 0.65 and HAGOS sub-scores were 51 (pain), 49 (symptoms), 53 (ADL), 35 (sport), 20 (physical activity) and 29, respectively. We conclude that patients undergoing hip arthroscopy report considerable pain, loss of function, reduced level of activity and reduced quality-of-life prior to surgery....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...

  2. 911 Master PSAP Registry

    Data.gov (United States)

    Federal Communications Commission — Updated as of 5Oct2017. The Registry lists PSAPs by an FCC assigned identification number, PSAP Name, State, County, City, and provides information on any type of...

  3. NOAA's Integrated Tsunami Database: Data for improved forecasts, warnings, research, and risk assessments

    Science.gov (United States)

    Stroker, Kelly; Dunbar, Paula; Mungov, George; Sweeney, Aaron; McCullough, Heather; Carignan, Kelly

    2015-04-01

    The National Oceanic and Atmospheric Administration (NOAA) has primary responsibility in the United States for tsunami forecast, warning, research, and supports community resiliency. NOAA's National Geophysical Data Center (NGDC) and co-located World Data Service for Geophysics provide a unique collection of data enabling communities to ensure preparedness and resilience to tsunami hazards. Immediately following a damaging or fatal tsunami event there is a need for authoritative data and information. The NGDC Global Historical Tsunami Database (http://www.ngdc.noaa.gov/hazard/) includes all tsunami events, regardless of intensity, as well as earthquakes and volcanic eruptions that caused fatalities, moderate damage, or generated a tsunami. The long-term data from these events, including photographs of damage, provide clues to what might happen in the future. NGDC catalogs the information on global historical tsunamis and uses these data to produce qualitative tsunami hazard assessments at regional levels. In addition to the socioeconomic effects of a tsunami, NGDC also obtains water level data from the coasts and the deep-ocean at stations operated by the NOAA/NOS Center for Operational Oceanographic Products and Services, the NOAA Tsunami Warning Centers, and the National Data Buoy Center (NDBC) and produces research-quality data to isolate seismic waves (in the case of the deep-ocean sites) and the tsunami signal. These water-level data provide evidence of sea-level fluctuation and possible inundation events. NGDC is also building high-resolution digital elevation models (DEMs) to support real-time forecasts, implemented at 75 US coastal communities. After a damaging or fatal event NGDC begins to collect and integrate data and information from many organizations into the hazards databases. Sources of data include our NOAA partners, the U.S. Geological Survey, the UNESCO Intergovernmental Oceanographic Commission (IOC) and International Tsunami Information Center

  4. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten

    2016-01-01

    AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...

  5. Food-pics: an image database for experimental research on eating and appetite

    Directory of Open Access Journals (Sweden)

    Jens eBlechert

    2014-06-01

    Full Text Available Our current environment is characterized by the omnipresence of food cues. The sight and smell of real foods, but also graphically depictions of appetizing foods, can guide our eating behavior, for example, by eliciting food craving and influencing food choice. The relevance of visual food cues on human information processing has been demonstrated by a growing body of studies employing food images across the disciplines of psychology, medicine, and neuroscience. However, currently used food image sets vary considerably across laboratories and image characteristics (contrast, brightness, etc. and food composition (calories, macronutrients, etc. are often unspecified. These factors might have contributed to some of the inconsistencies of this research. To remedy this, we developed food-pics, a picture database comprising 568 food images and 315 non-food images along with detailed meta-data. A total of N = 1988 individuals with large variance in age and weight from German speaking countries and North America provided normative ratings of valence, arousal, palatability, desire to eat, recognizability and visual complexity. Furthermore, data on macronutrients (g, energy density (kcal, and physical image characteristics (color composition, contrast, brightness, size, complexity are provided. The food-pics image data base is freely available under the creative commons license with the hope that the set will facilitate standardization and comparability across studies and advance experimental research on the determinants of eating behavior.

  6. The Developmental Brain Disorders Database (DBDB): a curated neurogenetics knowledge base with clinical and research applications.

    Science.gov (United States)

    Mirzaa, Ghayda M; Millen, Kathleen J; Barkovich, A James; Dobyns, William B; Paciorkowski, Alex R

    2014-06-01

    The number of single genes associated with neurodevelopmental disorders has increased dramatically over the past decade. The identification of causative genes for these disorders is important to clinical outcome as it allows for accurate assessment of prognosis, genetic counseling, delineation of natural history, inclusion in clinical trials, and in some cases determines therapy. Clinicians face the challenge of correctly identifying neurodevelopmental phenotypes, recognizing syndromes, and prioritizing the best candidate genes for testing. However, there is no central repository of definitions for many phenotypes, leading to errors of diagnosis. Additionally, there is no system of levels of evidence linking genes to phenotypes, making it difficult for clinicians to know which genes are most strongly associated with a given condition. We have developed the Developmental Brain Disorders Database (DBDB: https://www.dbdb.urmc.rochester.edu/home), a publicly available, online-curated repository of genes, phenotypes, and syndromes associated with neurodevelopmental disorders. DBDB contains the first referenced ontology of developmental brain phenotypes, and uses a novel system of levels of evidence for gene-phenotype associations. It is intended to assist clinicians in arriving at the correct diagnosis, select the most appropriate genetic test for that phenotype, and improve the care of patients with developmental brain disorders. For researchers interested in the discovery of novel genes for developmental brain disorders, DBDB provides a well-curated source of important genes against which research sequencing results can be compared. Finally, DBDB allows novel observations about the landscape of the neurogenetics knowledge base. © 2014 Wiley Periodicals, Inc.

  7. Development of a database for prompt γ-ray neutron activation analysis. Summary report of the second research coordination meeting

    International Nuclear Information System (INIS)

    Lone, M.A.; Mughabghab, S.F.; Paviotti-Corcuera, R.

    2001-06-01

    This report summarizes the presentations, recommendations and conclusions of the Second Research Co-ordination Meeting on Development of a Database for Prompt γ-ray Neutron Activation Analysis. The purpose of this meeting was to review results achieved on the development of the database, discuss further developments and planning of the products ol this CRP. Actions to be taken were agreed upon with the aim to complete the project by the end of 2002. (author)

  8. [Project evidência [evidence]: research and education about accessing scientific databases in Azores].

    Science.gov (United States)

    Soares, Hélia; Pereira, Sandra M; Neves, Ajuda; Gomes, Amy; Teixeira, Bruno; Oliveira, Carolina; Sousa, Fábio; Tavares, Márcio; Tavares, Patrícia; Dutra, Raquel; Pereira, Hélder Rocha

    2013-04-01

    Project Evidência [Evidence] intends to promote the use of scientific databases among nurses. This study aims to design educational interventions that facilitate nurses' access to these databases, to determine nurses' habits regarding the use of scientific databases, and to determine the impact that educational interventions on scientific databases have on Azorean nurses who volunteered for this project. An intervention project was conducted, and a quantitative descriptive survey was designed to evaluate the impact two and five months after the educational intervention. This impact was investigated considering certain aspects, namely, the nurses' knowledge, habits and reasons for using scientific databases. A total of 192 nurses participated in this study, and the primary results indicate that the educational intervention had a positive impact based not only on the increased frequency of using platforms or databases of scientific information (DSIs) s but also on the competence and self-awareness regarding its use and consideration of the reasons for accessing this information.

  9. Free access to INIS database provides a gateway to nuclear energy research results

    International Nuclear Information System (INIS)

    Tolonen, E.; Malmgren, M.

    2009-01-01

    Free access to INIS database was opened to all the Internet users around the world on May, 2009. The article reviews the history of INIS (the International Nuclear Information System), data aquisition process, database content and search possibilities. INIS is focused on the worldwide literature of the peaceful uses of nuclear energy and the database is produced in close collaboration with the IEA/ETDE World Energy Base (ETDEWEB), a database focusing on all aspects of energy. Nuclear Science Abstracts database (NSA), which is a comprehensive collection of international nuclear science and technology literature for the period 1948 through 1976, is also briefly discussed in the article. In Finland, the recently formed Aalto University is responsible for collecting and disseminating information (literature) and for the preparation of input to the INIS and IEA/ETDE Databases on the national level

  10. Development of a reference database for ion beam analysis. Summary report of the first research coordination meeting

    International Nuclear Information System (INIS)

    Vickridge, I.; Schwerer, O.

    2006-01-01

    A summary is given of the First Research Coordination Meeting on the Development of a Reference Database for Ion Beam Analysis, including background information, objectives, recommendations for measurements, and a list of tasks assigned to participants. The next research co-ordination meeting will be held in May 2007. (author)

  11. The research of network database security technology based on web service

    Science.gov (United States)

    Meng, Fanxing; Wen, Xiumei; Gao, Liting; Pang, Hui; Wang, Qinglin

    2013-03-01

    Database technology is one of the most widely applied computer technologies, its security is becoming more and more important. This paper introduced the database security, network database security level, studies the security technology of the network database, analyzes emphatically sub-key encryption algorithm, applies this algorithm into the campus-one-card system successfully. The realization process of the encryption algorithm is discussed, this method is widely used as reference in many fields, particularly in management information system security and e-commerce.

  12. [Types of medical registries - definitions, methodological aspects and quality of the scientific work with registries].

    Science.gov (United States)

    Mathis-Edenhofer, Stefan; Piso, Brigitte

    2011-12-01

    This work presents a comprehensive list of registry definitions including broader and narrower definitions. Compared to each other different methodological issues can be identified. Some of these issues are common for all registry types; some can be assigned more easily to a specific registry type. Instruments for evaluating the quality of registers reflect many of the mentioned aspects. Generally, and especially at registers with a descriptive or exploratory research dimension it is important to consider their intended purpose and in about it was achieved. This includes, for instance, whether the purpose and the methodology are coordinated. From the start of registration an initiator should be - based on the purpose - aware of the methodological dimension of the registry. This helps to apply the correct type of the registry, the appropriate guidance and, ultimately, the arguments for the effort (cost-benefit ratio).

  13. Post-Discharge Bleeding after Percutaneous Coronary Intervention and Subsequent Mortality and Myocardial Infarction: Insights from the HMO Research Network-Stent Registry

    Science.gov (United States)

    Valle, Javier A.; Shetterly, Susan; Maddox, Thomas M.; Ho, P. Michael; Bradley, Steven M.; Sandhu, Amneet; Magid, David; Tsai, Thomas T.

    2016-01-01

    Background Bleeding following hospital discharge from percutaneous coronary intervention (PCI) is associated with increased risk of subsequent myocardial infarction (MI) and death, however the timing of adverse events following these bleeding events is poorly understood. Defining this relationship may help clinicians identify critical periods when patients are at highest risk. Methods and Results All patients undergoing PCI from 2004–2007 who survived to hospital discharge without a bleeding event were identified from the HMO Research Network-Stent Registry. Post-discharge rates and timing of bleeding-related hospitalizations, MI and death were defined. We then assessed the association between post-discharge bleeding-related hospitalizations with death and MI using Cox proportional hazards models. Among 8,137 post-PCI patients surviving to hospital discharge without in-hospital bleeding, 391 (4.8%) suffered bleeding-related hospitalization after discharge, with the highest incidence of bleeding-related hospitalizations occurring within 30 days of discharge (n=79, 20.2%). Post-discharge bleeding-related hospitalization after PCI was associated with subsequent death or MI (hazard ratio [HR] 3.09; 95% confidence interval [CI] 2.41–3.96), with the highest risk for death or MI occurring in the first 60 days after bleeding-related hospitalization (HR 7.16, CI 3.93–13.05). Conclusions Approximately 1 in 20 post-PCI patients are readmitted for bleeding, with the highest incidence occurring within 30 days of discharge. Patients suffering post-discharge bleeding are at increased risk for subsequent death or MI, with the highest risk occurring within the first 60 days following a bleeding-related hospitalization. These findings suggest a critical period after bleeding events when patients are most vulnerable for further adverse events. PMID:27301394

  14. Integrated image data and medical record management for rare disease registries. A general framework and its instantiation to theGerman Calciphylaxis Registry.

    Science.gov (United States)

    Deserno, Thomas M; Haak, Daniel; Brandenburg, Vincent; Deserno, Verena; Classen, Christoph; Specht, Paula

    2014-12-01

    Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future.

  15. There Is a Significant Discrepancy Between "Big Data" Database and Original Research Publications on Hip Arthroscopy Outcomes: A Systematic Review.

    Science.gov (United States)

    Sochacki, Kyle R; Jack, Robert A; Safran, Marc R; Nho, Shane J; Harris, Joshua D

    2018-06-01

    The purpose of this study was to compare (1) major complication, (2) revision, and (3) conversion to arthroplasty rates following hip arthroscopy between database studies and original research peer-reviewed publications. A systematic review was performed using PRISMA guidelines. PubMed, SCOPUS, SportDiscus, and Cochrane Central Register of Controlled Trials were searched for studies that investigated major complication (dislocation, femoral neck fracture, avascular necrosis, fluid extravasation, septic arthritis, death), revision, and hip arthroplasty conversion rates following hip arthroscopy. Major complication, revision, and conversion to hip arthroplasty rates were compared between original research (single- or multicenter therapeutic studies) and database (insurance database using ICD-9/10 and/or current procedural terminology coding terminology) publishing studies. Two hundred seven studies (201 original research publications [15,780 subjects; 54% female] and 6 database studies [20,825 subjects; 60% female]) were analyzed (mean age, 38.2 ± 11.6 years old; mean follow-up, 2.7 ± 2.9 years). The database studies had a significantly higher age (40.6 + 2.8 vs 35.4 ± 11.6), body mass index (27.4 ± 5.6 vs 24.9 ± 3.1), percentage of females (60.1% vs 53.8%), and longer follow-up (3.1 ± 1.6 vs 2.7 ± 3.0) compared with original research (P database studies (P = .029; relative risk [RR], 1.3). There was a significantly higher rate of femoral neck fracture (0.24% vs 0.03%; P database studies. Reoperations occurred at a significantly higher rate in the database studies (11.1% vs 7.3%; P database studies (8.0% vs 3.7%; P Database studies report significantly increased major complication, revision, and conversion to hip arthroplasty rates compared with original research investigations of hip arthroscopy outcomes. Level IV, systematic review of Level I-IV studies. Copyright © 2018 Arthroscopy Association of North America. Published by Elsevier Inc. All rights

  16. Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

    Science.gov (United States)

    Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

    2017-11-28

    Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

  17. The Research Potential of the Electronic OED Database at the University of Waterloo: A Case Study.

    Science.gov (United States)

    Berg, Donna Lee

    1991-01-01

    Discusses the history and structure of the online database of the second edition of the Oxford English Dictionary (OED) and the software tools developed at the University of Waterloo to manipulate the unusually complex database. Four sample searches that indicate some types of problems that might be encountered are appended. (DB)

  18. Prerequisites for data-based decision making in the classroom: Research evidence and practical illustrations

    NARCIS (Netherlands)

    Hoogland, Inge; Schildkamp, Kim; van der Kleij, Fabienne; Heitink, Maaike Christine; Kippers, Wilma Berdien; Veldkamp, Bernard P.; Dijkstra, Anne M.

    2016-01-01

    Data-based decision making can lead to increased student learning. The desired effects of increased student learning can only be realized if data-based decision making is implemented successfully. Therefore, a systematic literature review was conducted to identify prerequisites of such successful

  19. Patterns of Undergraduates' Use of Scholarly Databases in a Large Research University

    Science.gov (United States)

    Mbabu, Loyd Gitari; Bertram, Albert; Varnum, Ken

    2013-01-01

    Authentication data was utilized to explore undergraduate usage of subscription electronic databases. These usage patterns were linked to the information literacy curriculum of the library. The data showed that out of the 26,208 enrolled undergraduate students, 42% of them accessed a scholarly database at least once in the course of the entire…

  20. MonetDB: Two Decades of Research in Column-oriented Database Architectures

    NARCIS (Netherlands)

    S. Idreos (Stratos); F.E. Groffen (Fabian); N.J. Nes (Niels); S. Manegold (Stefan); K.S. Mullender (Sjoerd); M.L. Kersten (Martin)

    2012-01-01

    textabstractMonetDB is a state-of-the-art open-source column-store database management system targeting applications in need for analytics over large collections of data. MonetDB is actively used nowadays in health care, in telecommunications as well as in scientific databases and in data management

  1. Governance and oversight of researcher access to electronic health data: the role of the Independent Scientific Advisory Committee for MHRA database research, 2006-2015.

    Science.gov (United States)

    Waller, P; Cassell, J A; Saunders, M H; Stevens, R

    2017-03-01

    In order to promote understanding of UK governance and assurance relating to electronic health records research, we present and discuss the role of the Independent Scientific Advisory Committee (ISAC) for MHRA database research in evaluating protocols proposing the use of the Clinical Practice Research Datalink. We describe the development of the Committee's activities between 2006 and 2015, alongside growth in data linkage and wider national electronic health records programmes, including the application and assessment processes, and our approach to undertaking this work. Our model can provide independence, challenge and support to data providers such as the Clinical Practice Research Datalink database which has been used for well over 1,000 medical research projects. ISAC's role in scientific oversight ensures feasible and scientifically acceptable plans are in place, while having both lay and professional membership addresses governance issues in order to protect the integrity of the database and ensure that public confidence is maintained.

  2. Research on spatio-temporal database techniques for spatial information service

    Science.gov (United States)

    Zhao, Rong; Wang, Liang; Li, Yuxiang; Fan, Rongshuang; Liu, Ping; Li, Qingyuan

    2007-06-01

    Geographic data should be described by spatial, temporal and attribute components, but the spatio-temporal queries are difficult to be answered within current GIS. This paper describes research into the development and application of spatio-temporal data management system based upon GeoWindows GIS software platform which was developed by Chinese Academy of Surveying and Mapping (CASM). Faced the current and practical requirements of spatial information application, and based on existing GIS platform, one kind of spatio-temporal data model which integrates vector and grid data together was established firstly. Secondly, we solved out the key technique of building temporal data topology, successfully developed a suit of spatio-temporal database management system adopting object-oriented methods. The system provides the temporal data collection, data storage, data management and data display and query functions. Finally, as a case study, we explored the application of spatio-temporal data management system with the administrative region data of multi-history periods of China as the basic data. With all the efforts above, the GIS capacity of management and manipulation in aspect of time and attribute of GIS has been enhanced, and technical reference has been provided for the further development of temporal geographic information system (TGIS).

  3. Unraveling the web of viroinformatics: computational tools and databases in virus research.

    Science.gov (United States)

    Sharma, Deepak; Priyadarshini, Pragya; Vrati, Sudhanshu

    2015-02-01

    The beginning of the second century of research in the field of virology (the first virus was discovered in 1898) was marked by its amalgamation with bioinformatics, resulting in the birth of a new domain--viroinformatics. The availability of more than 100 Web servers and databases embracing all or specific viruses (for example, dengue virus, influenza virus, hepatitis virus, human immunodeficiency virus [HIV], hemorrhagic fever virus [HFV], human papillomavirus [HPV], West Nile virus, etc.) as well as distinct applications (comparative/diversity analysis, viral recombination, small interfering RNA [siRNA]/short hairpin RNA [shRNA]/microRNA [miRNA] studies, RNA folding, protein-protein interaction, structural analysis, and phylotyping and genotyping) will definitely aid the development of effective drugs and vaccines. However, information about their access and utility is not available at any single source or on any single platform. Therefore, a compendium of various computational tools and resources dedicated specifically to virology is presented in this article. Copyright © 2015, American Society for Microbiology. All Rights Reserved.

  4. Aurorasaurus Database of Real-Time, Soft-Sensor Sourced Aurora Data for Space Weather Research

    Science.gov (United States)

    Kosar, B.; MacDonald, E.; Heavner, M.

    2017-12-01

    Aurorasaurus is an innovative citizen science project focused on two fundamental objectives i.e., collecting real-time, ground-based signals of auroral visibility from citizen scientists (soft-sensors) and incorporating this new type of data into scientific investigations pertaining to aurora. The project has been live since the Fall of 2014, and as of Summer 2017, the database compiled approximately 12,000 observations (5295 direct reports and 6413 verified tweets). In this presentation, we will focus on demonstrating the utility of this robust science quality data for space weather research needs. These data scale with the size of the event and are well-suited to capture the largest, rarest events. Emerging state-of-the-art computational methods based on statistical inference such as machine learning frameworks and data-model integration methods can offer new insights that could potentially lead to better real-time assessment and space weather prediction when citizen science data are combined with traditional sources.

  5. Collaborative research between academia and industry using a large clinical trial database: a case study in Alzheimer's disease

    DEFF Research Database (Denmark)

    Jones, Roy; Wilkinson, David; Lopez, Oscar L

    2011-01-01

    Large clinical trials databases, developed over the course of a comprehensive clinical trial programme, represent an invaluable resource for clinical researchers. Data mining projects sponsored by industry that use these databases, however, are often not viewed favourably in the academic medical...... community because of concerns that commercial, rather than scientific, goals are the primary purpose of such endeavours. Thus, there are few examples of sustained collaboration between leading academic clinical researchers and industry professionals in a large-scale data mining project. We present here...

  6. The Danish adult diabetes registry

    DEFF Research Database (Denmark)

    Jørgensen, Marit Eika; Kristensen, Jette K.; Husted, Gitte Reventlov

    2016-01-01

    Aim of the database: The aim of the Danish Adult Diabetes Registry (DADR) is to provide data from both the primary health care sector (general practice [GP]) and the secondary sector (specialized outpatient clinics) to assess the quality of treatment given to patients with diabetes. The indicators...... represent process and outcome indicators selected from the literature. Study population: The total diabetes population in Denmark is estimated to be ∼300,000 adult diabetes patients. Approximately 10% have type 1 diabetes, which is managed mainly in the secondary sector, and 90% have type 2 diabetes......, glucose-, blood pressure-, and lipid-lowering treatment (yes/no), insulin pump treatment (yes/ no), and date of last eye and foot examination. Descriptive data: In 2014, the annual report included data regarding over 38,000 patients from outpatient clinics, which is assumed to have included almost all...

  7. Design and Implementation of the Intensive Care Unit Quality Management Registry: Monitoring Quality and Cost of an Adult Intensive Care Unit in a Greek State Hospital.

    Science.gov (United States)

    Kosmidis, Dimitrios; Koutsouki, Sotiria; Lampiri, Klairi; Nagy, Eva Ottilia; Papaioannou, Vasilios; Pneumatikos, Ioannis; Anastassopoulos, George

    2017-11-01

    Intensive care electronic registries have been instrumental in quality measurement, improvement, and assurance of intensive care. In this article, the development and pilot implementation of the Intensive Care Unit Quality Management Registry are described, with a particular focus on monitoring the quality and operational cost in an adult ICU at a northern Greek state hospital. A relational database was developed for a hospital ICU so that qualitative and financial data are recorded for further analysis needed for planning quality care improvement and enhanced efficiency. Key features of this database registry were low development cost, user friendliness, maximum data security, and interoperability in existing hospital information systems. The database included patient demographics, nursing and medical parameters, and quality and performance indicators as established in many national registries worldwide. Cost recording was based on a mixed approach: at patient level ("bottom-up" method) and at department level ("top-down" method). During the pilot phase of the database operation, regular monitoring of quality and cost data revealed several fields of quality excellence, while indicating room for improvement for others. Parallel recording and trending of multiple parameters showed that the database can be utilized for optimum ICU quality and cost management and also for further research purposes by nurses, physicians, and administrators.

  8. The Danish Cardiac Rehabilitation Database

    Directory of Open Access Journals (Sweden)

    Zwisler AD

    2016-10-01

    The Regional Research Unit, Region Zealand, Roskilde, 19Department of Medicine, Cardiovascular Research Unit, Regional Hospital Herning, Herning, Denmark Aim of database: The Danish Cardiac Rehabilitation Database (DHRD aims to improve the quality of cardiac rehabilitation (CR to the benefit of patients with coronary heart disease (CHD.Study population: Hospitalized patients with CHD with stenosis on coronary angiography treated with percutaneous coronary intervention, coronary artery bypass grafting, or medication alone. Reporting is mandatory for all hospitals in Denmark delivering CR. The database was initially implemented in 2013 and was fully running from August 14, 2015, thus comprising data at a patient level from the latter date onward.Main variables: Patient-level data are registered by clinicians at the time of entry to CR directly into an online system with simultaneous linkage to other central patient registers. Follow-up data are entered after 6 months. The main variables collected are related to key outcome and performance indicators of CR: referral and adherence, lifestyle, patient-related outcome measures, risk factor control, and medication. Program-level online data are collected every third year.Descriptive data: Based on administrative data, approximately 14,000 patients with CHD are hospitalized at 35 hospitals annually, with 75% receiving one or more outpatient rehabilitation services by 2015. The database has not yet been running for a full year, which explains the use of approximations.Conclusion: The DHRD is an online, national quality improvement database on CR, aimed at patients with CHD. Mandatory registration of data at both patient level as well as program level is done on the database. DHRD aims to systematically monitor the quality of CR over time, in order to improve the quality of CR throughout Denmark to benefit patients. Keywords: secondary prevention, coronary heart disease, cardiovascular prevention, clinical quality registry

  9. Development and Feasibility Testing of a Critical Care EEG Monitoring Database for Standardized Clinical Reporting and Multicenter Collaborative Research.

    Science.gov (United States)

    Lee, Jong Woo; LaRoche, Suzette; Choi, Hyunmi; Rodriguez Ruiz, Andres A; Fertig, Evan; Politsky, Jeffrey M; Herman, Susan T; Loddenkemper, Tobias; Sansevere, Arnold J; Korb, Pearce J; Abend, Nicholas S; Goldstein, Joshua L; Sinha, Saurabh R; Dombrowski, Keith E; Ritzl, Eva K; Westover, Michael B; Gavvala, Jay R; Gerard, Elizabeth E; Schmitt, Sarah E; Szaflarski, Jerzy P; Ding, Kan; Haas, Kevin F; Buchsbaum, Richard; Hirsch, Lawrence J; Wusthoff, Courtney J; Hopp, Jennifer L; Hahn, Cecil D

    2016-04-01

    The rapid expansion of the use of continuous critical care electroencephalogram (cEEG) monitoring and resulting multicenter research studies through the Critical Care EEG Monitoring Research Consortium has created the need for a collaborative data sharing mechanism and repository. The authors describe the development of a research database incorporating the American Clinical Neurophysiology Society standardized terminology for critical care EEG monitoring. The database includes flexible report generation tools that allow for daily clinical use. Key clinical and research variables were incorporated into a Microsoft Access database. To assess its utility for multicenter research data collection, the authors performed a 21-center feasibility study in which each center entered data from 12 consecutive intensive care unit monitoring patients. To assess its utility as a clinical report generating tool, three large volume centers used it to generate daily clinical critical care EEG reports. A total of 280 subjects were enrolled in the multicenter feasibility study. The duration of recording (median, 25.5 hours) varied significantly between the centers. The incidence of seizure (17.6%), periodic/rhythmic discharges (35.7%), and interictal epileptiform discharges (11.8%) was similar to previous studies. The database was used as a clinical reporting tool by 3 centers that entered a total of 3,144 unique patients covering 6,665 recording days. The Critical Care EEG Monitoring Research Consortium database has been successfully developed and implemented with a dual role as a collaborative research platform and a clinical reporting tool. It is now available for public download to be used as a clinical data repository and report generating tool.

  10. Research on Big Data Attribute Selection Method in Submarine Optical Fiber Network Fault Diagnosis Database

    Directory of Open Access Journals (Sweden)

    Chen Ganlang

    2017-11-01

    Full Text Available At present, in the fault diagnosis database of submarine optical fiber network, the attribute selection of large data is completed by detecting the attributes of the data, the accuracy of large data attribute selection cannot be guaranteed. In this paper, a large data attribute selection method based on support vector machines (SVM for fault diagnosis database of submarine optical fiber network is proposed. Mining large data in the database of optical fiber network fault diagnosis, and calculate its attribute weight, attribute classification is completed according to attribute weight, so as to complete attribute selection of large data. Experimental results prove that ,the proposed method can improve the accuracy of large data attribute selection in fault diagnosis database of submarine optical fiber network, and has high use value.

  11. RDD Databases

    Data.gov (United States)

    National Oceanic and Atmospheric Administration, Department of Commerce — This database was established to oversee documents issued in support of fishery research activities including experimental fishing permits (EFP), letters of...

  12. The Method of Analysis Derived Coefficients of Database as a New Method of Historical Research (for Example, a Database of Ballistic Parameters of Naval Artillery

    Directory of Open Access Journals (Sweden)

    Nicholas W. Mitiukov

    2015-12-01

    Full Text Available In paper there is proposed a new method of historical research, based on analysis of derivatives coefficients of database (for example, the form factor in the database of ballistic data. This method has a much greater protection from subjectivism and direct falsification, compared with the analysis obtained directly from the source of the numerical series, as any intentional or unintentional distortion of the raw data provides a significant contrast ratio derived from the average sample values. Application of this method to the analysis of ballistic data base of naval artillery allowed to find the facts, forcing a new look at some of the events in the history data on the German naval artillery before World War I, probably overpriced for disinformation opponents of the Entente; during the First World War, Spain, apparently held secret talks with the firm Bofors ended purchase of Swedish shells; the first Russian naval rifled guns were created obvious based on the project Blackly, not Krupp as traditionally considered.

  13. Comprehensive research synopsis and systematic meta-analyses in Parkinson's disease genetics: The PDGene database.

    Directory of Open Access Journals (Sweden)

    Christina M Lill

    Full Text Available More than 800 published genetic association studies have implicated dozens of potential risk loci in Parkinson's disease (PD. To facilitate the interpretation of these findings, we have created a dedicated online resource, PDGene, that comprehensively collects and meta-analyzes all published studies in the field. A systematic literature screen of -27,000 articles yielded 828 eligible articles from which relevant data were extracted. In addition, individual-level data from three publicly available genome-wide association studies (GWAS were obtained and subjected to genotype imputation and analysis. Overall, we performed meta-analyses on more than seven million polymorphisms originating either from GWAS datasets and/or from smaller scale PD association studies. Meta-analyses on 147 SNPs were supplemented by unpublished GWAS data from up to 16,452 PD cases and 48,810 controls. Eleven loci showed genome-wide significant (P < 5 × 10(-8 association with disease risk: BST1, CCDC62/HIP1R, DGKQ/GAK, GBA, LRRK2, MAPT, MCCC1/LAMP3, PARK16, SNCA, STK39, and SYT11/RAB25. In addition, we identified novel evidence for genome-wide significant association with a polymorphism in ITGA8 (rs7077361, OR 0.88, P  =  1.3 × 10(-8. All meta-analysis results are freely available on a dedicated online database (www.pdgene.org, which is cross-linked with a customized track on the UCSC Genome Browser. Our study provides an exhaustive and up-to-date summary of the status of PD genetics research that can be readily scaled to include the results of future large-scale genetics projects, including next-generation sequencing studies.

  14. The Western Denmark Heart Registry

    DEFF Research Database (Denmark)

    Schmidt, Morten; Maeng, Michael; Madsen, Morten

    2018-01-01

    The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary interven......The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary...

  15. Summary Report of 1st Research Coordination Meeting on Development of Reference Database for Beta-delayed Neutron Emission

    International Nuclear Information System (INIS)

    Dillmann, Iris; Dimitriou, Paraskevi; Singh, Balraj

    2014-03-01

    A summary is given of the 1st Research Coordination Meeting of the new IAEA Coordinated Research Project (CRP) on Development of a Reference Database for Beta-delayed neutron emission data. Participants presented their work, reviewed the current status of the field with regards to individual precursors and aggregate data, and discussed the scope of the work to be undertaken. A list of priorities and task assignments was produced. (author)

  16. United States Transuranium Registry summary report, July 1, 1974 to October 1, 1975 to ERDA Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Norwood, W.D.; Newton, C.E. Jr.

    1975-11-01

    The primary purpose of the Registry is to protect the interests of workers, employers and the public by serving as a national focal point for the acquisition and provision of the latest and most precise information about the effects of the transuranic elements on man. This is being done by establishing the population at risk. To date some 9063 transuranium workers have been so identified. On a continuing basis, the best current estimates of the amount and location of any internal deposition of any of the transuranium elements in employees are being accumulated. These determinations have been improved by reconciliation with actual burdens found in various organs at autopsy or by alternate methods. Such employees are followed clinically and by epidemiological methods to determine whether there may be any adverse effects on such desposits on health or longevity. Registry statistics are given for the following sites: Hanford, Rocky Flats, Los Alamos, Savannah River, Mount, and Oak Ridge. The seven appendces contain information related to the Registry activities

  17. Cancer Registry Data

    Centers for Disease Control (CDC) Podcasts

    2017-05-24

    Dr. Loria Pollack, a Senior Medical Epidemiologist, talks about the importance of cancer registry data to understanding how cancer affects the United States–now and in the future.  Created: 5/24/2017 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 5/24/2017.

  18. Danish Hip Arthroscopy Registry

    DEFF Research Database (Denmark)

    Mygind-Klavsen, Bjarne; Lund, Bent; Nielsen, Torsten Grønbech

    2018-01-01

    PURPOSE: Predictors of outcome after femoroacetabular impingement (FAI) surgery are not well-documented. This study presents data from the Danish Hip Arthroscopy Registry (DHAR) for such analyses. The purpose of this study was to identify predictors of poor outcome after FAI surgery in a Danish FAI...

  19. The Danish Twin Registry

    DEFF Research Database (Denmark)

    Skytthe, Axel; Ohm Kyvik, Kirsten; Vilstrup Holm, Niels

    2011-01-01

    Introduction: The Danish Twin Registry is a unique source for studies of genetic, familial and environmental factors on life events, health conditions and diseases. Content: More than 85,000 twin pairs born 1870-2008 in Denmark. Validity and coverage: Four main ascertainment methods have been emp...

  20. A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

    Science.gov (United States)

    Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

    2017-08-01

    Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

  1. Current situation and challenge of registry in China.

    Science.gov (United States)

    Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

    2014-09-01

    Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

  2. Iranian Joint Registry(Iranian National Hip and Knee Arthroplasty Registry

    Directory of Open Access Journals (Sweden)

    Hamidreza Aslani

    2016-04-01

    Full Text Available Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR with a joint collaboration of the Social Security Organization (SSO and academic research departments considering the requirements of the Iran’s Ministry of Health and Education.

  3. The Danish Fetal Medicine Database

    Directory of Open Access Journals (Sweden)

    Ekelund CK

    2016-10-01

    Full Text Available Charlotte Kvist Ekelund,1 Tine Iskov Kopp,2 Ann Tabor,1 Olav Bjørn Petersen3 1Department of Obstetrics, Center of Fetal Medicine, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark; 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Glostrup, Denmark; 3Fetal Medicine Unit, Aarhus University Hospital, Aarhus Nord, Denmark Aim: The aim of this study is to set up a database in order to monitor the detection rates and false-positive rates of first-trimester screening for chromosomal abnormalities and prenatal detection rates of fetal malformations in Denmark. Study population: Pregnant women with a first or second trimester ultrasound scan performed at all public hospitals in Denmark are registered in the database. Main variables/descriptive data: Data on maternal characteristics, ultrasonic, and biochemical variables are continuously sent from the fetal medicine units' Astraia databases to the central database via web service. Information about outcome of pregnancy (miscarriage, termination, live birth, or stillbirth is received from the National Patient Register and National Birth Register and linked via the Danish unique personal registration number. Furthermore, results of all pre- and postnatal chromosome analyses are sent to the database. Conclusion: It has been possible to establish a fetal medicine database, which monitors first-trimester screening for chromosomal abnormalities and second-trimester screening for major fetal malformations with the input from already collected data. The database is valuable to assess the performance at a regional level and to compare Danish performance with international results at a national level. Keywords: prenatal screening, nuchal translucency, fetal malformations, chromosomal abnormalities

  4. IAEA-coordinated research programme for the establishment of a database of thermophysical properties of reactor materials

    International Nuclear Information System (INIS)

    Maglic, K.D.; Kupitz, J.; Krett, V.

    1991-01-01

    Operational and safety assessments of nuclear reactors rely on models, computer programs, databases, and input parameters. Obviously, the best computer programs can be only as good as their input data, of which the thermophysical properties of reactor materials constitute an important portion. Thermophysical data are needed for modelling the thermal behaviour of materials under normal, transient, and accident conditions. The IAEA analysed the needs of its member states in this area, and a decision was made to organise a coordinated research programme (CRP) aimed at the generation and establishment of a reliable and complete database of reactor materials. The main features of advanced water-cooled reactors are described, and the content of the IAEA CRP for the establishment of a thermophysical property database-system of operation, objectives, and implementation schedule-is discussed. (Author)

  5. Correlating Orphaned Windows Registry Data Structures

    Directory of Open Access Journals (Sweden)

    Damir Kahved

    2009-06-01

    Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

  6. A three dimensional children head database for acoustical research and development

    DEFF Research Database (Denmark)

    Harder, Stine; Paulsen, Rasmus Reinhold; Larsen, Martin

    2013-01-01

    Most computational-acoustic work within spatial hearing relies on head-related transfer functions from databases of measurements taken on adult humans or dummy heads. We aim to provide a set of 3D digital heads including children, from which head-related transfer functions can be computed instead...

  7. Historical land use databases: a new layer of information for geographical research

    NARCIS (Netherlands)

    Kramer, H.; Mücher, C.A.; Hazeu, G.W.

    2011-01-01

    In this paper we describe how historical land use information has been derived for the whole of Europe, using the World Atlas of Agriculture, scale 1: 2,500,000. This paper describes the process of converting the analog land-use maps to a digital European historical land-use database, the Historical

  8. 3D DIGITAL MODEL DATABASE APPLIED TO CONSERVATION AND RESEARCH OF WOODEN CONSTRUCTION IN CHINA

    Directory of Open Access Journals (Sweden)

    Y. Zheng

    2013-07-01

    Full Text Available Protected by the Tai-Hang Mountains, Shanxi Province, located in north central China, is a highly prosperous, densely populated valley and considered to be one of the cradles of Chinese civilization. Its continuous habitation and rich culture have given rise to a large number of temple complexes and pavilions. Among these structures, 153 can be dated as early as from the Tang dynasty (618- 907C.E. to the end of the Yuan dynasty (1279–1368C.E. in Southern Shanxi area. The buildings are the best-preserved examples of wooden Chinese architecture in existence, exemplifying historic building technology and displaying highly intricate architectural decoration and detailing. They have survived war, earthquakes, and, in the last hundred years, neglect. In 2005, a decade-long conservation project was initiated by the State Administration of Cultural Heritage of China (SACH to conserve and document these important buildings. The conservation process requires stabilization, conservation of important features, and, where necessary, partial dismantlement in order to replace unsound structural elements. Project team of CHCC have developed a practical recording system that created a record of all building components prior to and during the conservation process. After that we are trying to establish a comprehensive database which include all of the 153 earlier buildings, through which we can easily entering, browse, indexing information of the wooden construction, even deep into component details. The Database can help us to carry out comparative studies of these wooden structures, and, provide important support for the continued conservation of these heritage buildings. For some of the most important wooden structure, we have established three-dimensional models. Connected the Database with 3D Digital Model based on ArcGIS, we have developed 3D Digital Model Database for these cherish buildings. The 3D Digital Model Database helps us set up an integrate

  9. D Digital Model Database Applied to Conservation and Research of Wooden Construction in China

    Science.gov (United States)

    Zheng, Y.

    2013-07-01

    Protected by the Tai-Hang Mountains, Shanxi Province, located in north central China, is a highly prosperous, densely populated valley and considered to be one of the cradles of Chinese civilization. Its continuous habitation and rich culture have given rise to a large number of temple complexes and pavilions. Among these structures, 153 can be dated as early as from the Tang dynasty (618- 907C.E.) to the end of the Yuan dynasty (1279-1368C.E.) in Southern Shanxi area. The buildings are the best-preserved examples of wooden Chinese architecture in existence, exemplifying historic building technology and displaying highly intricate architectural decoration and detailing. They have survived war, earthquakes, and, in the last hundred years, neglect. In 2005, a decade-long conservation project was initiated by the State Administration of Cultural Heritage of China (SACH) to conserve and document these important buildings. The conservation process requires stabilization, conservation of important features, and, where necessary, partial dismantlement in order to replace unsound structural elements. Project team of CHCC have developed a practical recording system that created a record of all building components prior to and during the conservation process. After that we are trying to establish a comprehensive database which include all of the 153 earlier buildings, through which we can easily entering, browse, indexing information of the wooden construction, even deep into component details. The Database can help us to carry out comparative studies of these wooden structures, and, provide important support for the continued conservation of these heritage buildings. For some of the most important wooden structure, we have established three-dimensional models. Connected the Database with 3D Digital Model based on ArcGIS, we have developed 3D Digital Model Database for these cherish buildings. The 3D Digital Model Database helps us set up an integrate information inventory

  10. Geoscientific (GEO) database of the Andra Meuse / Haute-Marne research center

    International Nuclear Information System (INIS)

    Tabani, P.; Hemet, P.; Hermand, G.; Delay, J.; Auriere, C.

    2010-01-01

    Document available in extended abstract form only. The GEO database (geo-scientific database of the Meuse/Haute-Marne Center) is a tool developed by Andra, with a view to group in a secured computer form all data related to the acquisition of in situ and laboratory measurements made on solid and fluid samples. This database has three main functions: - Acquisition and management of data and computer files related to geological, geomechanical, hydrogeological and geochemical measurements on solid and fluid samples and in situ measurements (logging, on sample measurements, geological logs, etc). - Available consultation by the staff on Andra's intranet network for selective viewing of data linked to a borehole and/or a sample and for making computations and graphs on sets of laboratory measurements related to a sample. - Physical management of fluid and solid samples stored in a 'core library' in order to localize a sample, follow-up its movement out of the 'core library' to an organization, and carry out regular inventories. The GEO database is a relational Oracle data base. It is installed on a data server which stores information and manages the users' transactions. The users can consult, download and exploit data from any computer connected to the Andra network or Internet. Management of the access rights is made through a login/ password. Four geo-scientific explanations are linked to the Geo database, they are: - The Geosciences portal: The Geosciences portal is a web Intranet application accessible from the ANDRA network. It does not require a particular installation from the client and is accessible through the Internet navigator. A SQL Server Express database manages the users and access rights to the application. This application is used for the acquisition of hydrogeological and geochemical data collected on the field and on fluid samples, as well as data related to scientific work carried out at surface level or in drifts

  11. Development and application of characteristic database for uranium mining and metallurgy in the library of Beijing Research Institute of Chemical Engineering and Metallurgy

    International Nuclear Information System (INIS)

    Gao Renxi

    2012-01-01

    Beijing Research Institute of Chemical Engineering and Metallurgy (BRICEM) is a multi disciplinary comprehensive research institute engaged in uranium mining, engineering design and related material researches. After 53 years of researches and development, BRICEM has accumulated a plenty of valuable data and resources. By analyzing the actual conditions of BRICEM's technological database, this thesis aims to propose the idea of building a characteristic database for uranium mining and metallurgy. It gives an in-depth analysis on content design, development status and problems of database development, in order to come up with solutions to these problems, as well as suggestions on the future development plans of the characteristic database. (author)

  12. ATGC: a database of orthologous genes from closely related prokaryotic genomes and a research platform for microevolution of prokaryotes

    Energy Technology Data Exchange (ETDEWEB)

    Novichkov, Pavel S.; Ratnere, Igor; Wolf, Yuri I.; Koonin, Eugene V.; Dubchak, Inna

    2009-07-23

    The database of Alignable Tight Genomic Clusters (ATGCs) consists of closely related genomes of archaea and bacteria, and is a resource for research into prokaryotic microevolution. Construction of a data set with appropriate characteristics is a major hurdle for this type of studies. With the current rate of genome sequencing, it is difficult to follow the progress of the field and to determine which of the available genome sets meet the requirements of a given research project, in particular, with respect to the minimum and maximum levels of similarity between the included genomes. Additionally, extraction of specific content, such as genomic alignments or families of orthologs, from a selected set of genomes is a complicated and time-consuming process. The database addresses these problems by providing an intuitive and efficient web interface to browse precomputed ATGCs, select appropriate ones and access ATGC-derived data such as multiple alignments of orthologous proteins, matrices of pairwise intergenomic distances based on genome-wide analysis of synonymous and nonsynonymous substitution rates and others. The ATGC database will be regularly updated following new releases of the NCBI RefSeq. The database is hosted by the Genomics Division at Lawrence Berkeley National laboratory and is publicly available at http://atgc.lbl.gov.

  13. Education Level Is a Strong Prognosticator in the Subgroup Aged More Than 50 Years Regardless of the Molecular Subtype of Breast Cancer: A Study Based on the Nationwide Korean Breast Cancer Registry Database.

    Science.gov (United States)

    Hwang, Ki-Tae; Noh, Woochul; Cho, Se-Heon; Yu, Jonghan; Park, Min Ho; Jeong, Joon; Lee, Hyouk Jin; Kim, Jongjin; Oh, Sohee; Kim, Young A

    2017-10-01

    This study investigated the role of the education level (EL) as a prognostic factor for breast cancer and analyzed the relationship between the EL and various confounding factors. The data for 64,129 primary breast cancer patients from the Korean Breast Cancer Registry were analyzed. The EL was classified into two groups according to the education period; the high EL group (≥ 12 years) and low EL group (EL conferred a superior prognosis compared to a low EL in the subgroup aged > 50 years (hazard ratio, 0.626; 95% confidence interval [CI], 0.577 to 0.678) but not in the subgroup aged ≤ 50 years (hazard ratio, 0.941; 95% CI, 0.865 to 1.024). The EL was a significant independent factor in the subgroup aged > 50 years according to multivariate analyses. The high EL group showed more favorable clinicopathologic features and a higher proportion of patients in this group received lumpectomy, radiation therapy, and endocrine therapy. In the high EL group, a higher proportion of patients received chemotherapy in the subgroups with unfavorable clinicopathologic features. The EL was a significant prognosticator across all molecular subtypes of breast cancer. The EL is a strong independent prognostic factor for breast cancer in the subgroup aged > 50 years regardless of the molecular subtype, but not in the subgroup aged ≤ 50 years. Favorable clinicopathologic features and active treatments can explain the main causality of the superior prognosis in the high EL group.

  14. Genetic Testing Registry

    Science.gov (United States)

    ... RefSeqGene UniGene All Genes & Expression Resources... Genetics & Medicine Bookshelf Database of Genotypes and Phenotypes (dbGaP) Genetic Testing ... ProtMap HomoloGene Protein Clusters All Homology Resources... Literature Bookshelf E-Utilities Journals in NCBI Databases MeSH Database ...

  15. Design and utilization of a Flight Test Engineering Database Management System at the NASA Dryden Flight Research Facility

    Science.gov (United States)

    Knighton, Donna L.

    1992-01-01

    A Flight Test Engineering Database Management System (FTE DBMS) was designed and implemented at the NASA Dryden Flight Research Facility. The X-29 Forward Swept Wing Advanced Technology Demonstrator flight research program was chosen for the initial system development and implementation. The FTE DBMS greatly assisted in planning and 'mass production' card preparation for an accelerated X-29 research program. Improved Test Plan tracking and maneuver management for a high flight-rate program were proven, and flight rates of up to three flights per day, two times per week were maintained.

  16. Advances in the design, development, and deployment of the U.S. Army Research Laboratory (ARL) multimodal signatures database

    Science.gov (United States)

    Bennett, Kelly; Robertson, James

    2011-06-01

    Recent advances in the design, development, and deployment of U.S. Army Research Laboratory's (ARL) Multimodal Signature Database (MMSDB) create a state-of-the-art database system with Web-based access through a Web interface designed specifically for research and development. Tens of thousands of signatures are currently available for researchers to support their algorithm development and refinement for sensors and other security systems. Each dataset is stored in (Hierarchical Data Format 5 (HDF5) format for easy modeling and storing of signatures and archived sensor data, ground truth, calibration information, algorithms, and other documentation. Archived HDF5 formatted data provides the basis for computational interoperability across a variety of tools including MATLAB, Octave, and Python. The database has a Web-based front-end with public and restricted access interfaces, along with 24/7 availability and support. This paper describes the overall design of the system, and the recent enhancements and future vision, including the ability for researchers to share algorithms, data, and documentation in the cloud, and providing an ability to run algorithms and software for testing and evaluation purposes remotely across multiple domains and computational tools. The paper will also describe in detail the HDF5 format for several multimodal sensor types.

  17. Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

    Science.gov (United States)

    Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

    2017-07-01

    All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.

  18. The database of the Danish Renal Cancer Group

    DEFF Research Database (Denmark)

    Petersen, Astrid Christine; Søgaard, Mette; Mehnert, Frank

    2016-01-01

    AIM OF THE DATABASE: The main purpose of the database of the Danish Renal Cancer Group (DaRenCaData) is to improve the quality of renal cancer treatment in Denmark and secondarily to conduct observational research. STUDY POPULATION: DaRenCaData includes all Danish patients with a first......-time diagnosis of renal cancer in the Danish National Pathology Registry since August 1, 2010. MAIN VARIABLES: DaRenCaData holds data on demographic characteristics, treatments, and pathology collected through linkage to central registries and online registration of a few clinical key variables. Eight quality...... indicators have been selected for monitoring treatment quality and outcome after renal cancer. DESCRIPTIVE DATA: The incidence of renal cancer in Denmark has increased from 12.7 per 100,000 population-years in 2010-2011 to 15.9 per 100,000 population-years in 2014-2015. A total of 3,977 Danish patients...

  19. Database of operation history for fuel elements in swimming pool research reactor 300

    International Nuclear Information System (INIS)

    Chen Wei; Jiang Yanwei

    2006-01-01

    It is to cooperate with the original data preparation of ORIGEN2 that the database of operation history in SPRR -300 is built with Microsoft Access. Only one table is used to record the history of the reactor after simplifications. Table of every assembly records only its load history, which will not exceed 20. Tables in the database are linked by the field of Load ID. It is confirmed that errors occurred during statistic and/or input can be classified into two kinds while inquiries are built for them to check errors automatically. Inquiry is also built for every assembly, while data of any assembly are collected from the table of total reactor history according to the given table of assembly load history. After those data are exported to pure text files, a program named Operation Data Processing Program is developed to treat them into operation history data needed by ORIGEN2 calculation. (authors)

  20. SU-E-P-26: Oncospace: A Shared Radiation Oncology Database System Designed for Personalized Medicine, Decision Support, and Research

    International Nuclear Information System (INIS)

    Bowers, M; Robertson, S; Moore, J; Wong, J; DeWeese, T; McNutt, T; Phillips, M; Hendrickson, K; Song, W; Kwok, P

    2015-01-01

    Purpose: Advancement in Radiation Oncology (RO) practice develops through evidence based medicine and clinical trial. Knowledge usable for treatment planning, decision support and research is contained in our clinical data, stored in an Oncospace database. This data store and the tools for populating and analyzing it are compatible with standard RO practice and are shared with collaborating institutions. The question is - what protocol for system development and data sharing within an Oncospace Consortium? We focus our example on the technology and data meaning necessary to share across the Consortium. Methods: Oncospace consists of a database schema, planning and outcome data import and web based analysis tools.1) Database: The Consortium implements a federated data store; each member collects and maintains its own data within an Oncospace schema. For privacy, PHI is contained within a single table, accessible to the database owner.2) Import: Spatial dose data from treatment plans (Pinnacle or DICOM) is imported via Oncolink. Treatment outcomes are imported from an OIS (MOSAIQ).3) Analysis: JHU has built a number of webpages to answer analysis questions. Oncospace data can also be analyzed via MATLAB or SAS queries.These materials are available to Consortium members, who contribute enhancements and improvements. Results: 1) The Oncospace Consortium now consists of RO centers at JHU, UVA, UW and the University of Toronto. These members have successfully installed and populated Oncospace databases with over 1000 patients collectively.2) Members contributing code and getting updates via SVN repository. Errors are reported and tracked via Redmine. Teleconferences include strategizing design and code reviews.3) Successfully remotely queried federated databases to combine multiple institutions’ DVH data for dose-toxicity analysis (see below – data combined from JHU and UW Oncospace). Conclusion: RO data sharing can and has been effected according to the Oncospace

  1. SU-E-P-26: Oncospace: A Shared Radiation Oncology Database System Designed for Personalized Medicine, Decision Support, and Research

    Energy Technology Data Exchange (ETDEWEB)

    Bowers, M; Robertson, S; Moore, J; Wong, J; DeWeese, T; McNutt, T [Johns Hopkins University, Baltimore, MD (United States); Phillips, M [Univ Washington, Seattle, WA (United States); Hendrickson, K [University of Washington, Seattle, WA (United States); Song, W; Kwok, P [Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, U of T, Toronto, Ontario (Canada)

    2015-06-15

    Purpose: Advancement in Radiation Oncology (RO) practice develops through evidence based medicine and clinical trial. Knowledge usable for treatment planning, decision support and research is contained in our clinical data, stored in an Oncospace database. This data store and the tools for populating and analyzing it are compatible with standard RO practice and are shared with collaborating institutions. The question is - what protocol for system development and data sharing within an Oncospace Consortium? We focus our example on the technology and data meaning necessary to share across the Consortium. Methods: Oncospace consists of a database schema, planning and outcome data import and web based analysis tools.1) Database: The Consortium implements a federated data store; each member collects and maintains its own data within an Oncospace schema. For privacy, PHI is contained within a single table, accessible to the database owner.2) Import: Spatial dose data from treatment plans (Pinnacle or DICOM) is imported via Oncolink. Treatment outcomes are imported from an OIS (MOSAIQ).3) Analysis: JHU has built a number of webpages to answer analysis questions. Oncospace data can also be analyzed via MATLAB or SAS queries.These materials are available to Consortium members, who contribute enhancements and improvements. Results: 1) The Oncospace Consortium now consists of RO centers at JHU, UVA, UW and the University of Toronto. These members have successfully installed and populated Oncospace databases with over 1000 patients collectively.2) Members contributing code and getting updates via SVN repository. Errors are reported and tracked via Redmine. Teleconferences include strategizing design and code reviews.3) Successfully remotely queried federated databases to combine multiple institutions’ DVH data for dose-toxicity analysis (see below – data combined from JHU and UW Oncospace). Conclusion: RO data sharing can and has been effected according to the Oncospace

  2. Documentation for the USAF School of Aerospace Medicine Altitude Decompression Sickness Research Database

    Science.gov (United States)

    2010-05-01

    identification during some database operations and that "t" and other such identifiers are dropped in the following headings to allow easier reading of the...chamber floor, the subject cranks at 24 rpm with 20-Watt resistance as read on the 50 rpm ergometer scale, switching hands each 2 pedal revolutions...Emboli DCS Decompression Sickness EKG /ECG Electrokardiograph (German), electrocardiograph (English) EVA Extravehicular Activity ICD Informed Consent

  3. Establishing the user requirements for the research reactor decommissioning database system

    International Nuclear Information System (INIS)

    Park, S. K.; Park, H. S.; Lee, G. W.; Park, J. H.

    2002-01-01

    In generally, so much information and data will be raised during the decommissioning activities. It is need a systematical electric system for the management of that. A database system for the decommissioning information and data management from the KRR-1 and 2 decommissioning project is developing now. All information and data will be put into this database system and retrieval also. For the developing the DB system, the basic concept, user requirements were established the then set up the system for categorizing the information and data. The entities of tables for input the data was raised and categorized and then converted the code. The ERD (Entity Relation Diagram) was also set up to show their relation. In need of the developing the user interface system for retrieval the data, is should be studied the analyzing on the relation between the input and output the data. Through this study, as results, the items of output tables are established and categorized according to the requirement of the user interface system for the decommissioning information and data. These tables will be used for designing the prototype and be set up by several feeds back for establishing the decommissioning database system

  4. Data Mining in Distributed Database of the First Egyptian Thermal Research Reactor (ETRR-1)

    International Nuclear Information System (INIS)

    Abo Elez, R.H.; Ayad, N.M.A.; Ghuname, A.A.A.

    2006-01-01

    Distributed database (DDB)technology application systems are growing up to cover many fields an domains, and at different levels. the aim of this paper is to shade some lights on applying the new technology of distributed database on the ETRR-1 operation data logged by the data acquisition system (DACQUS)and one can extract a useful knowledge. data mining with scientific methods and specialize tools is used to support the extraction of useful knowledge from the rapidly growing volumes of data . there are many shapes and forms for data mining methods. predictive methods furnish models capable of anticipating the future behavior of quantitative or qualitative database variables. when the relationship between the dependent an independent variables is nearly liner, linear regression method is the appropriate data mining strategy. so, multiple linear regression models have been applied to a set of data samples of the ETRR-1 operation data, using least square method. the results show an accurate analysis of the multiple linear regression models as applied to the ETRR-1 operation data

  5. The phytophthora genome initiative database: informatics and analysis for distributed pathogenomic research.

    Science.gov (United States)

    Waugh, M; Hraber, P; Weller, J; Wu, Y; Chen, G; Inman, J; Kiphart, D; Sobral, B

    2000-01-01

    The Phytophthora Genome Initiative (PGI) is a distributed collaboration to study the genome and evolution of a particularly destructive group of plant pathogenic oomycete, with the goal of understanding the mechanisms of infection and resistance. NCGR provides informatics support for the collaboration as well as a centralized data repository. In the pilot phase of the project, several investigators prepared Phytophthora infestans and Phytophthora sojae EST and Phytophthora sojae BAC libraries and sent them to another laboratory for sequencing. Data from sequencing reactions were transferred to NCGR for analysis and curation. An analysis pipeline transforms raw data by performing simple analyses (i.e., vector removal and similarity searching) that are stored and can be retrieved by investigators using a web browser. Here we describe the database and access tools, provide an overview of the data therein and outline future plans. This resource has provided a unique opportunity for the distributed, collaborative study of a genus from which relatively little sequence data are available. Results may lead to insight into how better to control these pathogens. The homepage of PGI can be accessed at http:www.ncgr.org/pgi, with database access through the database access hyperlink.

  6. Neurosurgery clinical registry data collection utilizing Informatics for Integrating Biology and the Bedside and electronic health records at the University of Rochester.

    Science.gov (United States)

    Pittman, Christine A; Miranpuri, Amrendra S

    2015-12-01

    In a population health-driven health care system, data collection through the use of clinical registries is becoming imperative to continue to drive effective and efficient patient care. Clinical registries rely on a department's ability to collect high-quality and accurate data. Currently, however, data are collected manually with a high risk for error. The University of Rochester's Department of Neurosurgery in conjunction with the university's Clinical and Translational Science Institute has implemented the integrated use of the Informatics for Integrating Biology and the Bedside (i2b2) informatics framework with the Research Electronic Data Capture (REDCap) databases.

  7. Creating a data exchange strategy for radiotherapy research : Towards federated databases and anonymised public datasets

    NARCIS (Netherlands)

    Skripcak, Tomas; Belka, Claus; Bosch, Walter; Brink, Carsten; Brunner, Thomas; Budach, Volker; Buettner, Daniel; Debus, Juergen; Dekker, Andre; Grau, Cai; Gulliford, Sarah; Hurkmans, Coen; Just, Uwe; Krause, Mechthild; Lambin, Philippe; Langendijk, Johannes A.; Lewensohn, Rolf; Luehr, Armin; Maingon, Philippe; Masucci, Michele; Niyazi, Maximilian; Poortmans, Philip; Simon, Monique; Schmidberger, Heinz; Spezi, Emiliano; Stuschke, Martin; Valentini, Vincenzo; Verheij, Marcel; Whitfield, Gillian; Zackrisson, Bjoern; Zips, Daniel; Baumann, Michael

    2014-01-01

    Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate 'translational research

  8. Creating a data exchange strategy for radiotherapy research: Towards federated databases and anonymised public datasets

    NARCIS (Netherlands)

    Skripcak, T.; Belka, C.; Bosch, W.; Brink, C. Van den; Brunner, T.; Budach, V.; Buttner, D.; Debus, J.; Dekker, A.; Grau, C.; Gulliford, S.; Hurkmans, C.; Just, U.; Krause, M.; Lambin, P.; Langendijk, J.A.; Lewensohn, R.; Luhr, A.; Maingon, P.; Masucci, M.; Niyazi, M.; Poortmans, P.M.P.; Simon, M.; Schmidberger, H.; Spezi, E.; Stuschke, M.; Valentini, V.; Verheij, M.; Whitfield, G.; Zackrisson, B.; Zips, D.; Baumann, M.

    2014-01-01

    Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate translational research

  9. Artificial Nutritional Support Registries: systematic review.

    Science.gov (United States)

    Castelló-Botía, I; Wanden-Berghe, C; Sanz-Valero, J

    2009-01-01

    The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.

  10. Improving Care And Research Electronic Data Trust Antwerp (iCAREdata): a research database of linked data on out-of-hours primary care.

    Science.gov (United States)

    Colliers, Annelies; Bartholomeeusen, Stefaan; Remmen, Roy; Coenen, Samuel; Michiels, Barbara; Bastiaens, Hilde; Van Royen, Paul; Verhoeven, Veronique; Holmgren, Philip; De Ruyck, Bernard; Philips, Hilde

    2016-05-04

    Primary out-of-hours care is developing throughout Europe. High-quality databases with linked data from primary health services can help to improve research and future health services. In 2014, a central clinical research database infrastructure was established (iCAREdata: Improving Care And Research Electronic Data Trust Antwerp, www.icaredata.eu ) for primary and interdisciplinary health care at the University of Antwerp, linking data from General Practice Cooperatives, Emergency Departments and Pharmacies during out-of-hours care. Medical data are pseudonymised using the services of a Trusted Third Party, which encodes private information about patients and physicians before data is sent to iCAREdata. iCAREdata provides many new research opportunities in the fields of clinical epidemiology, health care management and quality of care. A key aspect will be to ensure the quality of data registration by all health care providers. This article describes the establishment of a research database and the possibilities of linking data from different primary out-of-hours care providers, with the potential to help to improve research and the quality of health care services.

  11. Creating a sampling frame for population-based veteran research: Representativeness and overlap of VA and Department of Defense databases

    OpenAIRE

    Donna L. Washington, MD, MPH; Su Sun, MPH; Mark Canning, BA

    2010-01-01

    Most veteran research is conducted in Department of Veterans Affairs (VA) healthcare settings, although most veterans obtain healthcare outside the VA. Our objective was to determine the adequacy and relative contributions of Veterans Health Administration (VHA), Veterans Benefits Administration (VBA), and Department of Defense (DOD) administrative databases for representing the U.S. veteran population, using as an example the creation of a sampling frame for the National Survey of Women Vete...

  12. Poor Prognosis of Lower Inner Quadrant in Lymph Node-negative Breast Cancer Patients Who Received No Chemotherapy: A Study Based on Nationwide Korean Breast Cancer Registry Database.

    Science.gov (United States)

    Hwang, Ki-Tae; Kim, Jongjin; Kim, Eun-Kyu; Jung, Sung Hoo; Sohn, Guiyun; Kim, Seung Il; Jeong, Joon; Lee, Hyouk Jin; Park, Jin Hyun; Oh, Sohee

    2017-07-01

    We aimed to investigate the prognostic influence of primary tumor site on the survival of patients with breast cancer. Data of 63,388 patients with primary breast cancer from the Korean Breast Cancer Registry were analyzed. Primary tumor sites were classified into 5 groups: upper outer quadrant, lower outer quadrant, upper inner quadrant, lower inner quadrant (LIQ), and central portion. We analyzed overall survival (OS) and breast cancer-specific survival (BCSS) according to primary tumor site. Central portion and LIQ showed lower survival rates regarding both OS and BCSS compared with the other 3 quadrants (all P < .05) and hazard ratios were 1.267 (95% CI, 1.180-1.360, P < .001) and 1.215 (95% CI, 1.097-1.345, P < .001), respectively. Although central portion showed more unfavorable clinicopathologic features, LIQ showed more favorable features than the other 3 quadrants. Primary tumor site was a significant factor in univariate and multivariate analyses for OS and BCSS (all P < .001). For lymph node-negative patients, LIQ showed a worse OS than the other primary tumor sites in the subgroup with no chemotherapy (P < .001), but that effect disappeared in the subgroup with chemotherapy (P = .058). LIQ showed a worse prognosis despite having more favorable clinicopathologic features than other tumor locations and it was more prominent for lymph node-negative patients who received no chemotherapy. The hypothesis of possible hidden internal mammary node metastasis could be suggested to play a key role in LIQ lesions. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. United States Transuranium Registry. Annual report, 1 October 1978-1 October 1979 to DOE Division of Biomedical and Environmental Research

    International Nuclear Information System (INIS)

    Breitenstein, B.D. Jr.; Newton, C.E. Jr.

    1980-01-01

    This Registry was established in 1968 to protect the interests of workers, employers, and the public by serving as a national focal point for the acquisition and provision of precise information about transuranics in humans. This purpose is accomplished by studying the distribution and concentration of transuranics in man through the analysis of autopsy tissues of accupationally exposed workers; by comparing the estimates of body or chest burdens made during the life of a worker with estimates based on the analysis of tissues obtained after death; by seeking in autopsy histopathological changes that might be attributed to the effects of transuranics; and by studying the findings of animal experiments involving transuranics and comparing them with data from human beings who had received a transuranic deposition. Seven DOE contractor laboratories and several contractor licensees participate in the Registry by encouraging their staff members to sign releases of health physics and medical information and releases for autopsies. Data files and release records are kept at the Hanford Environmental Health Foundation, Richland, Washington

  14. United States Transuranium and Uranium Registries

    International Nuclear Information System (INIS)

    Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

    1991-06-01

    This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjects reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs

  15. A plant resource and experiment management system based on the Golm Plant Database as a basic tool for omics research

    Directory of Open Access Journals (Sweden)

    Selbig Joachim

    2008-05-01

    names generated by the system and barcode labels facilitate identification and management of the material. Web pages are provided as user interfaces to facilitate maintaining the system in an environment with many desktop computers and a rapidly changing user community. Web based search tools are the basis for joint use of the material by all researchers of the institute. Conclusion The Golm Plant Database system, which is based on a relational database, collects the genetic and environmental information on plant material during its production or experimental use at the Max-Planck-Institute of Molecular Plant Physiology. It thus provides information according to the MIAME standard for the component 'Sample' in a highly standardised format. The Plant Database system thus facilitates collaborative work and allows efficient queries in data analysis for systems biology research.

  16. Development of a database for prompt γ-ray neutron activation analysis. Summary report of the first research coordination meeting

    International Nuclear Information System (INIS)

    Paviotti-Corcuera, R.; Lindstrom, R.M.

    2000-02-01

    This report summarizes the presentations, recommendations and conclusions of the First Research Co-ordination Meeting on Development of a Database for Prompt γ-ray Neutron Activation Analysis. Neutron-capture Prompt γ-ray Activation Analysis (PGAA) is a non-destructive radioanalytical method, capable of rapid or in-situ simultaneous multielement analysis of many elements of the Periodic Table, from hydrogen to uranium, in the same sample. Inaccuracy and incompleteness of the data available for use in PGAA are a significant handicap in the qualitative and quantitative analysis of capture-gamma spectra. The goal of this CRP is to replace the twenty-year-old data from a single laboratory with something fundamentally new: an evaluated database which includes a combination of evaluated nuclear physics data, physical theory, and recent measurements. The resulting database will be comparable in quality with that for radioactive decay. In addition, more accurate values of neutron capture cross-sections and γ-ray intensities that result from this database will improve the accuracy of radiation shielding calculations. (author)

  17. The GEM Global Active Faults Database: The growth and synthesis of a worldwide database of active structures for PSHA, research, and education

    Science.gov (United States)

    Styron, R. H.; Garcia, J.; Pagani, M.

    2017-12-01

    A global catalog of active faults is a resource of value to a wide swath of the geoscience, earthquake engineering, and hazards risk communities. Though construction of such a dataset has been attempted now and again through the past few decades, success has been elusive. The Global Earthquake Model (GEM) Foundation has been working on this problem, as a fundamental step in its goal of making a global seismic hazard model. Progress on the assembly of the database is rapid, with the concatenation of many national—, orogen—, and continental—scale datasets produced by different research groups throughout the years. However, substantial data gaps exist throughout much of the deforming world, requiring new mapping based on existing publications as well as consideration of seismicity, geodesy and remote sensing data. Thus far, new fault datasets have been created for the Caribbean and Central America, North Africa, and northeastern Asia, with Madagascar, Canada and a few other regions in the queue. The second major task, as formidable as the initial data concatenation, is the 'harmonization' of data. This entails the removal or recombination of duplicated structures, reconciliation of contrastinginterpretations in areas of overlap, and the synthesis of many different types of attributes or metadata into a consistent whole. In a project of this scale, the methods used in the database construction are as critical to project success as the data themselves. After some experimentation, we have settled on an iterative methodology that involves rapid accumulation of data followed by successive episodes of data revision, and a computer-scripted data assembly using GIS file formats that is flexible, reproducible, and as able as possible to cope with updates to the constituent datasets. We find that this approach of initially maximizing coverage and then increasing resolution is the most robust to regional data problems and the most amenable to continued updates and

  18. Establishment of database and network for research of stream generator and state of the art technology review

    Energy Technology Data Exchange (ETDEWEB)

    Choi, Jae Bong; Hur, Nam Su; Moon, Seong In; Seo, Hyeong Won; Park, Bo Kyu; Park, Sung Ho; Kim, Hyung Geun [Sungkyunkwan Univ., Seoul (Korea, Republic of)

    2004-02-15

    A significant number of steam generator tubes are defective and are removed from service or repaired world widely. This wide spread damage has been caused by diverse degradation mechanisms, some of which are difficult to detect and predict. Regarding domestic nuclear power plants, also, the increase of number of operating nuclear power plants and operating periods may result in the increase of steam generator tube failure. So, it is important to carry out the integrity evaluation process to prevent the steam generator tube damage. There are two objectives of this research. The one is to make database for the research of steam generator at domestic research institution. It will increase the efficiency and capability of limited domestic research resources by sharing data and information through network organization. Also, it will enhance the current standard of integrity evaluation procedure that is considerably conservative but can be more reasonable. The second objective is to establish the standard integrity evaluation procedure for steam generator tube by reviewing state of the art technology. The research resources related to steam generator tubes are managed by the established web-based database system. The following topics are covered in this project: development of web-based network for research on steam generator tubes review of state of the art technology.

  19. Establishment of database and network for research of stream generator and state of the art technology review

    International Nuclear Information System (INIS)

    Choi, Jae Bong; Hur, Nam Su; Moon, Seong In; Seo, Hyeong Won; Park, Bo Kyu; Park, Sung Ho; Kim, Hyung Geun

    2004-02-01

    A significant number of steam generator tubes are defective and are removed from service or repaired world widely. This wide spread damage has been caused by diverse degradation mechanisms, some of which are difficult to detect and predict. Regarding domestic nuclear power plants, also, the increase of number of operating nuclear power plants and operating periods may result in the increase of steam generator tube failure. So, it is important to carry out the integrity evaluation process to prevent the steam generator tube damage. There are two objectives of this research. The one is to make database for the research of steam generator at domestic research institution. It will increase the efficiency and capability of limited domestic research resources by sharing data and information through network organization. Also, it will enhance the current standard of integrity evaluation procedure that is considerably conservative but can be more reasonable. The second objective is to establish the standard integrity evaluation procedure for steam generator tube by reviewing state of the art technology. The research resources related to steam generator tubes are managed by the established web-based database system. The following topics are covered in this project: development of web-based network for research on steam generator tubes review of state of the art technology

  20. Construction of a rice glycoside hydrolase phylogenomic database and identification of targets for biofuel research

    Directory of Open Access Journals (Sweden)

    Rita eSharma

    2013-08-01

    Full Text Available Glycoside hydrolases (GH catalyze the hydrolysis of glycosidic bonds in cell wall polymers and can have major effects on cell wall architecture. Taking advantage of the massive datasets available in public databases, we have constructed a rice phylogenomic database of GHs (http://ricephylogenomics.ucdavis.edu/cellwalls/gh/. This database integrates multiple data types including the structural features, orthologous relationships, mutant availability and gene expression patterns for each GH family in a phylogenomic context. The rice genome encodes 437 GH genes classified into 34 families. Based on pairwise comparison with eight dicot and four monocot genomes, we identified 138 GH genes that are highly diverged between monocots and dicots, 57 of which have diverged further in rice as compared with four monocot genomes scanned in this study. Chromosomal localization and expression analysis suggest a role for both whole-genome and localized gene duplications in expansion and diversification of GH families in rice. We examined the meta-profiles of expression patterns of GH genes in twenty different anatomical tissues of rice. Transcripts of 51 genes exhibit tissue or developmental stage-preferential expression, whereas, seventeen other genes preferentially accumulate in actively growing tissues. When queried in RiceNet, a probabilistic functional gene network that facilitates functional gene predictions, nine out of seventeen genes form a regulatory network with the well-characterized genes involved in biosynthesis of cell wall polymers including cellulose synthase and cellulose synthase-like genes of rice. Two-thirds of the GH genes in rice are up regulated in response to biotic and abiotic stress treatments indicating a role in stress adaptation. Our analyses identify potential GH targets for cell wall modification.

  1. Updating Photonuclear Data Library and Generating a Reference Database for Photon Strength Functions. 1st Research Coordination Meeting. Summary Report

    International Nuclear Information System (INIS)

    Goriely, S.; Dimitriou, P.

    2016-07-01

    A summary is given of the 1 st Research Coordination Meeting of the new IAEA Co-ordinated Research Project (CRP) on Updating the Photonuclear Data Library and Generating a Reference Database for Photon Strength Functions. Participants presented their work, reviewed the current status of the field with regards to measurements, theoretical models and evaluations, discussed the scope of the work to be undertaken and agreed on a list of priorities and task assignments necessary to achieve the goals of the CRP. A summary of the presentations and discussions is presented in this report. (author)

  2. Database Description - Arabidopsis Phenome Database | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available List Contact us Arabidopsis Phenome Database Database Description General information of database Database n... BioResource Center Hiroshi Masuya Database classification Plant databases - Arabidopsis thaliana Organism T...axonomy Name: Arabidopsis thaliana Taxonomy ID: 3702 Database description The Arabidopsis thaliana phenome i...heir effective application. We developed the new Arabidopsis Phenome Database integrating two novel database...seful materials for their experimental research. The other, the “Database of Curated Plant Phenome” focusing

  3. Dansk Hjerteregister--en klinisk database

    DEFF Research Database (Denmark)

    Abildstrøm, Steen Zabell; Kruse, Marie; Rasmussen, Søren

    2008-01-01

    INTRODUCTION: The Danish Heart Registry (DHR) keeps track of all coronary angiographies (CATH), percutaneous coronary interventions (PCI), coronary artery bypass grafting (CABG), and adult heart valve surgery performed in Denmark. DHR is a clinical database established in order to follow the acti......INTRODUCTION: The Danish Heart Registry (DHR) keeps track of all coronary angiographies (CATH), percutaneous coronary interventions (PCI), coronary artery bypass grafting (CABG), and adult heart valve surgery performed in Denmark. DHR is a clinical database established in order to follow...

  4. Mapping the Iranian Research Literature in the Field of Traditional Medicine in Scopus Database 2010-2014.

    Science.gov (United States)

    GhaedAmini, Hossein; Okhovati, Maryam; Zare, Morteza; Saghafi, Zahra; Bazrafshan, Azam; GhaedAmini, Alireza; GhaedAmini, Mohammadreza

    2016-05-01

    The aim of this study was to provide research and collaboration overview of Iranian research efforts in the field of traditional medicine during 2010-2014. This is a bibliometric study using the Scopus database as data source, using search affiliation address relevant to traditional medicine and Iran as the search strategy. Subject and geographical overlay maps were also applied to visualize the network activities of the Iranian authors. Highly cited articles (citations >10) were further explored to highlight the impact of research domains more specifically. About 3,683 articles were published by Iranian authors in Scopus database. The compound annual growth rate of Iranian publications was 0.14% during 2010-2014. Tehran University of Medical Sciences (932 articles), Shiraz University of Medical Sciences (404 articles) and Tabriz Islamic Medical University (391 articles), were the leading institutions in the field of traditional medicine. Medicinal plants (72%), digestive system's disease (21%), basics of traditional medicine (13%), mental disorders (8%) were the major research topics. United States (7%), Netherlands (3%), and Canada (2.6%) were the most important collaborators of Iranian authors. Iranian research efforts in the field of traditional medicine have been increased slightly over the last years. Yet, joint multi-disciplinary collaborations are needed to cover inadequately described areas of traditional medicine in the country.

  5. Development of prostate cancer research database with the clinical data warehouse technology for direct linkage with electronic medical record system.

    Science.gov (United States)

    Choi, In Young; Park, Seungho; Park, Bumjoon; Chung, Byung Ha; Kim, Choung-Soo; Lee, Hyun Moo; Byun, Seok-Soo; Lee, Ji Youl

    2013-01-01

    In spite of increased prostate cancer patients, little is known about the impact of treatments for prostate cancer patients and outcome of different treatments based on nationwide data. In order to obtain more comprehensive information for Korean prostate cancer patients, many professionals urged to have national system to monitor the quality of prostate cancer care. To gain its objective, the prostate cancer database system was planned and cautiously accommodated different views from various professions. This prostate cancer research database system incorporates information about a prostate cancer research including demographics, medical history, operation information, laboratory, and quality of life surveys. And, this system includes three different ways of clinical data collection to produce a comprehensive data base; direct data extraction from electronic medical record (EMR) system, manual data entry after linking EMR documents like magnetic resonance imaging findings and paper-based data collection for survey from patients. We implemented clinical data warehouse technology to test direct EMR link method with St. Mary's Hospital system. Using this method, total number of eligible patients were 2,300 from 1997 until 2012. Among them, 538 patients conducted surgery and others have different treatments. Our database system could provide the infrastructure for collecting error free data to support various retrospective and prospective studies.

  6. Experiment Databases

    Science.gov (United States)

    Vanschoren, Joaquin; Blockeel, Hendrik

    Next to running machine learning algorithms based on inductive queries, much can be learned by immediately querying the combined results of many prior studies. Indeed, all around the globe, thousands of machine learning experiments are being executed on a daily basis, generating a constant stream of empirical information on machine learning techniques. While the information contained in these experiments might have many uses beyond their original intent, results are typically described very concisely in papers and discarded afterwards. If we properly store and organize these results in central databases, they can be immediately reused for further analysis, thus boosting future research. In this chapter, we propose the use of experiment databases: databases designed to collect all the necessary details of these experiments, and to intelligently organize them in online repositories to enable fast and thorough analysis of a myriad of collected results. They constitute an additional, queriable source of empirical meta-data based on principled descriptions of algorithm executions, without reimplementing the algorithms in an inductive database. As such, they engender a very dynamic, collaborative approach to experimentation, in which experiments can be freely shared, linked together, and immediately reused by researchers all over the world. They can be set up for personal use, to share results within a lab or to create open, community-wide repositories. Here, we provide a high-level overview of their design, and use an existing experiment database to answer various interesting research questions about machine learning algorithms and to verify a number of recent studies.

  7. Database Quality and Access Issues Relevant to Research Using Anesthesia Information Management System Data.

    Science.gov (United States)

    Epstein, Richard H; Dexter, Franklin

    2018-07-01

    For this special article, we reviewed the computer code, used to extract the data, and the text of all 47 studies published between January 2006 and August 2017 using anesthesia information management system (AIMS) data from Thomas Jefferson University Hospital (TJUH). Data from this institution were used in the largest number (P = .0007) of papers describing the use of AIMS published in this time frame. The AIMS was replaced in April 2017, making this finite sample finite. The objective of the current article was to identify factors that made TJUH successful in publishing anesthesia informatics studies. We examined the structured query language used for each study to examine the extent to which databases outside of the AIMS were used. We examined data quality from the perspectives of completeness, correctness, concordance, plausibility, and currency. Our results were that most could not have been completed without external database sources (36/47, 76.6%; P = .0003 compared with 50%). The operating room management system was linked to the AIMS and was used significantly more frequently (26/36, 72%) than other external sources. Access to these external data sources was provided, allowing exploration of data quality. The TJUH AIMS used high-resolution timestamps (to the nearest 3 milliseconds) and created audit tables to track changes to clinical documentation. Automatic data were recorded at 1-minute intervals and were not editable; data cleaning occurred during analysis. Few paired events with an expected order were out of sequence. Although most data elements were of high quality, there were notable exceptions, such as frequent missing values for estimated blood loss, height, and weight. Some values were duplicated with different units, and others were stored in varying locations. Our conclusions are that linking the TJUH AIMS to the operating room management system was a critical step in enabling publication of multiple studies using AIMS data. Access to this and

  8. Differences in Investigator-Initiated Trials between Japan and Other Countries: Analyses of Clinical Trials Sponsored by Academia and Government in the ClinicalTrials.gov Registry and in the Three Japanese Registries.

    Directory of Open Access Journals (Sweden)

    Tatsuya Ito

    Full Text Available Following the amendment of the Pharmaceutical Affairs Law in Japan in 2003 researchers were permitted to begin investigator-initiated trials (IITs. In subsequent years, however, the number of IITs remained low. In other countries in Asia as well as in Europe, North America, and South Africa, the number of IITs has increased over the past decade. The differences in the characteristics of IITs between Japan and other countries are unknown. Some studies have analyzed the characteristics of all clinical trials according to registry databases, but there has been less research focusing on IITs.The purpose of this study is to analyze the characteristics of IITs in the ClinicalTrials.gov registry and in the three Japanese registries, to identify differences in IITs between Japan and other countries.Using Thomson Reuters Pharma™, trials sponsored by academia and government as IITs in 2010 and registered in ClinicalTrials.gov were identified. IITs from 2004 to 2012 in Japan were identified in the three Japanese registries: the University Hospital Medical Information Network Clinical Trials Registry, the Japan Pharmaceutical Information Center Clinical Trials Information, and the Japan Medical Association Center for Clinical Trials, Clinical Trials Registry. Characterization was made of the trial purposes, phases, participants, masking, arms, design, controls, and other data.New and revised IITs registered in ClinicalTrials.gov during 2010 averaged about 40% of all sponsor-identified trials. IITs were nearly all early-phase studies with small numbers of participants. A total of 56 Japanese IITs were found over a period of 8 years, and these were also almost nearly all early-phase studies with small numbers of participants.There appear to be no great differences between Japan and other countries in terms of characteristics of IITs. These results should prompt a new review of the IIT environment in Japan.

  9. Nuclear threats in the vicinity of the Nordic countries. A database, Nordic Nuclear Safety Research

    International Nuclear Information System (INIS)

    Margrethe, I.; Eikelmann, H.

    2003-01-01

    The acute phase of an accident and the possibility of high exposure of the populations are always the most important threats in the emergency preparedness work. Radioactive contamination from an accident can however also cause long time effects for land use and enhanced doses to special population groups and economic problems for agriculture, grazing animals, reindeer industry, hunting, freshwater fishing, tourism and recreation. For planning purposes it is always valuable to be aware of potential radiation hazard and other potential threats in the vicinity of the Nordic countries. Thus, mapping such threats in a Nordic context is an important factor in emergency preparedness in the Nordic countries. The project has dealt with threats from the north west of Russia and the Baltic states. The results from the different activities in the project is generated in a web based database called the 'the base of knowledge'. (orig.)

  10. Research And Investigation To Establish The Database Of Environment Radiation Background For Vietnam (Phase 2009 -2011)

    International Nuclear Information System (INIS)

    Trinh Van Giap; Nguyen Huu Quyet; Nguyen Quang Long; Bui Dac Dung; Vuong Thu Bac; Le Dinh Cuong; Chu Vu Long; Le Ngoc Thiem; Truong Y; Nguyen Van Mai; Nguyen Ba Tien

    2013-01-01

    Setting up data base of natural radiation background serves for planning socio-economics development in a province as well as the whole country and estimating annual effective dose of population. Beside external irradiation dose caused by the natural radioisotopes in the series 238 U, 232 Th and 40 K in soil, population has been received internal dose caused by the above radioisotopes taken in the body from several ways. In order to complete the database of national radiation background and go to estimate annual effective radiation dose of population in the whole country, this project focus to carry out the works as following: (i) Setting up database of radiation background in the whole country: 150 soil samples that collected in the districts of 46 provinces have been analyzed. The average activity concentration of 238 U, 232 Th and 40 K are 37.86 Bq/kg, 58.88 Bq/kg and 462.78 Bq/kg, respectively. The outdoor, indoor and total annual effective doses are calculated: 0.087±0.036 mSv; 0.488±0.202 mSv and 0.576± 0.240 mSv, respectively. (ii) Setting up database of radiation background of province Ninh Thuan and Quang Nam: The detailed database of radiation background of all villages in Ninh Thuan and Quang Nam has been established. 84 soil samples in Ninh Thuan and 311 in Quang Nam were collected for analyze. The indoor and outdoor radon concentration at sampling positions has been measured. The average activities of 238 U, 232 Th, 40 K, and 222 Rn isotopes in Ninh Thuan are reported: 33.50 Bq/kg, 55.43 Bq/kg, 701.12 Bq/kg and 12.1 Bq/m 3 , 9.5 Bq/m 3 , respectively. The outdoor, indoor and total annual effective doses in Ninh Thuan are calculated: 0.095±0.029 mSv; 0.529±0.162 mSv and 0.624± 0.382 mSv, respectively. The average activities of 238 U, 232 Th, 40 K, and 222 Rn isotopes in Quang Nam are reported: 44.47 Bq/kg, 52.68 Bq/kg, 459.33 Bq/kg, 18.0 Bq/m 3 . The outdoor, indoor and total annual effective doses are calculated: 0.086±0.039 mSv; 0.482±0.216 m

  11. Data Quality in Institutional Arthroplasty Registries: Description of a Model of Validation and Report of Preliminary Results.

    Science.gov (United States)

    Bautista, Maria P; Bonilla, Guillermo A; Mieth, Klaus W; Llinás, Adolfo M; Rodríguez, Fernanda; Cárdenas, Laura L

    2017-07-01

    Arthroplasty registries are a relevant source of information for research and quality improvement in patient care and its value depends on the quality of the recorded data. The purpose of this study is to describe a model of validation and present the findings of validation of an Institutional Arthroplasty Registry (IAR). Information from 209 primary arthroplasties and revision surgeries of the hip, knee, and shoulder recorded in the IAR between March and September 2015 were analyzed in the following domains. Adherence is defined as the proportion of patients included in the registry, completeness is defined as the proportion of data effectively recorded, and accuracy is defined as the proportion of data consistent with medical records. A random sample of 53 patients (25.4%) was selected to assess the latest 2 domains. A direct comparison between the registry's database and medical records was performed. In total, 324 variables containing information on demographic data, surgical procedure, clinical outcomes, and key performance indicators were analyzed. Two hundred nine of 212 patients who underwent surgery during the study period were included in the registry, accounting for an adherence of 98.6%. Completeness was 91.7% and accuracy was 85.8%. Most errors were found in the preoperative range of motion and timely administration of prophylactic antibiotics and thromboprophylaxis. This model provides useful information regarding the quality of the recorded data since it identified deficient areas within the IAR. We recommend that institutional arthroplasty registries be constantly monitored for data quality before using their information for research or quality improvement purposes. Copyright © 2017 Elsevier Inc. All rights reserved.

  12. Database Description - RPD | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available ase Description General information of database Database name RPD Alternative name Rice Proteome Database...titute of Crop Science, National Agriculture and Food Research Organization Setsuko Komatsu E-mail: Database... classification Proteomics Resources Plant databases - Rice Organism Taxonomy Name: Oryza sativa Taxonomy ID: 4530 Database... description Rice Proteome Database contains information on protei...and entered in the Rice Proteome Database. The database is searchable by keyword,

  13. Database Description - RED | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available ase Description General information of database Database name RED Alternative name Rice Expression Database...enome Research Unit Shoshi Kikuchi E-mail : Database classification Plant databases - Rice Database classifi...cation Microarray, Gene Expression Organism Taxonomy Name: Oryza sativa Taxonomy ID: 4530 Database descripti... Article title: Rice Expression Database: the gateway to rice functional genomics...nt Science (2002) Dec 7 (12):563-564 External Links: Original website information Database maintenance site

  14. Contextualized B2B Registries

    OpenAIRE

    Radetzki, U; Boniface, M.J.; Surridge, M.

    2007-01-01

    Abstract. Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into busi-ness relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. In this paper we present a novel contextualized B2B registry that supports dynamic regist...

  15. DMPD: Fifty years of interferon research: aiming at a moving target. [Dynamic Macrophage Pathway CSML Database

    Lifescience Database Archive (English)

    Full Text Available mmunity. 2006 Sep;25(3):343-8. (.png) (.svg) (.html) (.csml) Show Fifty years of interferon research: aiming at a moving target. Pubm...edID 16979566 Title Fifty years of interferon research: aiming at a moving target.

  16. The Starkey habitat database for ungulate research: construction, documentation, and use.

    Science.gov (United States)

    Mary M. Rowland; Priscilla K. Coe; Rosemary J. Stussy; [and others].

    1998-01-01

    The Starkey Project, a large-scale, multidisciplinary research venture, began in 1987 in the Starkey Experimental Forest and Range in northeast Oregon. Researchers are studying effects of forest management on interactions and habitat use of mule deer (Odocoileus hemionus hemionus), elk (Cervus elaphus nelsoni), and cattle. A...

  17. Immediate Dissemination of Student Discoveries to a Model Organism Database Enhances Classroom-Based Research Experiences

    Science.gov (United States)

    Wiley, Emily A.; Stover, Nicholas A.

    2014-01-01

    Use of inquiry-based research modules in the classroom has soared over recent years, largely in response to national calls for teaching that provides experience with scientific processes and methodologies. To increase the visibility of in-class studies among interested researchers and to strengthen their impact on student learning, we have…

  18. Creating a data exchange strategy for radiotherapy research: Towards federated databases and anonymised public datasets

    DEFF Research Database (Denmark)

    Skripcak, Tomas; Belka, Claus; Bosch, Walter

    2014-01-01

    in radiation therapy and oncology. The exchange of study data is one of the fundamental principles behind data aggregation and data mining. The possibilities of reproducing the original study results, performing further analyses on existing research data to generate new hypotheses or developing computational...... to be addressed are data interoperability, utilisation of standards, data quality and privacy concerns, data ownership, rights to publish, data pooling architecture and storage. This paper discusses a framework for conceptual packages of ideas focused on a strategic development for international research data......Disconnected cancer research data management and lack of information exchange about planned and ongoing research are complicating the utilisation of internationally collected medical information for improving cancer patient care. Rapidly collecting/pooling data can accelerate translational research...

  19. FY 1998 survey report. Examinational research on the construction of body function database; 1998 nendo chosa hokokusho. Shintai kino database no kochiku ni kansuru chosa kenkyu

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1999-03-01

    The body function database is aimed at supplying and supporting products and environment friendly to aged people by supplying the data on body function of aged people in case of planning, designing and production when companies supply the products and environment. As a method for survey, group measuring was made for measurement of visual characteristics. For the measurement of action characteristics, the moving action including posture change was studied, the experimental plan was carried out, and items of group measurement and measuring methods were finally proposed. The database structure was made public at the end of this fiscal year, through the pre-publication/evaluation after the trial evaluation conducted using pilot database. In the study of the measurement of action characteristics, the verification test was conducted for a small-size group. By this, the measurement of action characteristics was finally proposed. In the body function database system, subjects on operation were extracted/bettered by trially evaluating pilot database, and also adjustment of right relations toward publication and preparation of management methods were made. An evaluation version was made supposing its publication. (NEDO)

  20. Reliability database of IEA-R1 Brazilian research reactor: Applications to the improvement of installation safety

    International Nuclear Information System (INIS)

    Oliveira, P.S.P.; Tondin, J.B.M.; Martins, M.O.; Yovanovich, M.; Ricci Filho, W.

    2010-01-01

    In this paper the main features of the reliability database being developed at Ipen-Cnen/SP for IEA-R1 reactor are briefly described. Besides that, the process for collection and updating of data regarding operation, failure and maintenance of IEA-R1 reactor components is presented. These activities have been conducted by the reactor personnel under the supervision of specialists in Probabilistic Safety Analysis (PSA). The compilation of data and subsequent calculation are based on the procedures defined during an IAEA Coordinated Research Project which Brazil took part in the period from 2001 to 2004. In addition to component reliability data, the database stores data on accident initiating events and human errors. Furthermore, this work discusses the experience acquired through the development of the reliability database covering aspects like improvements in the reactor records as well as the application of the results to the optimization of operation and maintenance procedures and to the PSA carried out for IEA-R1 reactor. (author)

  1. The Danish Urogynaecological Database

    DEFF Research Database (Denmark)

    Guldberg, Rikke; Brostrøm, Søren; Hansen, Jesper Kjær

    2013-01-01

    in the DugaBase from 1 January 2009 to 31 October 2010, using medical records as a reference. RESULTS: A total of 16,509 urogynaecological procedures were registered in the DugaBase by 31 December 2010. The database completeness has increased by calendar time, from 38.2 % in 2007 to 93.2 % in 2010 for public......INTRODUCTION AND HYPOTHESIS: The Danish Urogynaecological Database (DugaBase) is a nationwide clinical database established in 2006 to monitor, ensure and improve the quality of urogynaecological surgery. We aimed to describe its establishment and completeness and to validate selected variables....... This is the first study based on data from the DugaBase. METHODS: The database completeness was calculated as a comparison between urogynaecological procedures reported to the Danish National Patient Registry and to the DugaBase. Validity was assessed for selected variables from a random sample of 200 women...

  2. NeuPAT: an intranet database supporting translational research in neuroblastic tumors.

    Science.gov (United States)

    Villamón, Eva; Piqueras, Marta; Meseguer, Javier; Blanquer, Ignacio; Berbegall, Ana P; Tadeo, Irene; Hernández, Vicente; Navarro, Samuel; Noguera, Rosa

    2013-03-01

    Translational research in oncology is directed mainly towards establishing a better risk stratification and searching for appropriate therapeutic targets. This research generates a tremendous amount of complex clinical and biological data needing speedy and effective management. The authors describe the design, implementation and early experiences of a computer-aided system for the integration and management of data for neuroblastoma patients. NeuPAT facilitates clinical and translational research, minimizes the workload in consolidating the information, reduces errors and increases correlation of data through extensive coding. This design can also be applied to other tumor types. Copyright © 2012 Elsevier Ltd. All rights reserved.

  3. Constructing a population-based research database from routine maternal screening records: a resource for studying alloimmunization in pregnant women.

    Directory of Open Access Journals (Sweden)

    Brian K Lee

    Full Text Available BACKGROUND: Although screening for maternal red blood cell antibodies during pregnancy is a standard procedure, the prevalence and clinical consequences of non-anti-D immunization are poorly understood. The objective was to create a national database of maternal antibody screening results that can be linked with population health registers to create a research resource for investigating these issues. STUDY DESIGN AND METHODS: Each birth in the Swedish Medical Birth Register was uniquely identified and linked to the text stored in routine maternal antibody screening records in the time window from 9 months prior to 2 weeks after the delivery date. These text records were subjected to a computerized search for specific antibodies using regular expressions. To illustrate the research potential of the resulting database, selected antibody prevalence rates are presented as tables and figures, and the complete data (from more than 60 specific antibodies presented as online moving graphical displays. RESULTS: More than one million (1,191,761 births with valid screening information from 1982-2002 constitute the study population. Computerized coverage of screening increased steadily over time and varied by region as electronic records were adopted. To ensure data quality, we restricted analysis to birth records in areas and years with a sustained coverage of at least 80%, representing 920,903 births from 572,626 mothers in 17 of the 24 counties in Sweden. During the study period, non-anti-D and anti-D antibodies occurred in 76.8/10,000 and 14.1/10,000 pregnancies respectively, with marked differences between specific antibodies over time. CONCLUSION: This work demonstrates the feasibility of creating a nationally representative research database from the routine maternal antibody screening records from an extended calendar period. By linkage with population registers of maternal and child health, such data are a valuable resource for addressing important

  4. Research of Cadastral Data Modelling and Database Updating Based on Spatio-temporal Process

    Directory of Open Access Journals (Sweden)

    ZHANG Feng

    2016-02-01

    Full Text Available The core of modern cadastre management is to renew the cadastre database and keep its currentness,topology consistency and integrity.This paper analyzed the changes and their linkage of various cadastral objects in the update process.Combined object-oriented modeling technique with spatio-temporal objects' evolution express,the paper proposed a cadastral data updating model based on the spatio-temporal process according to people's thought.Change rules based on the spatio-temporal topological relations of evolution cadastral spatio-temporal objects are drafted and further more cascade updating and history back trace of cadastral features,land use and buildings are realized.This model implemented in cadastral management system-ReGIS.Achieved cascade changes are triggered by the direct driving force or perceived external events.The system records spatio-temporal objects' evolution process to facilitate the reconstruction of history,change tracking,analysis and forecasting future changes.

  5. Registry of Mineral and Petroleum Titles

    Energy Technology Data Exchange (ETDEWEB)

    Maclellan, I. M.; Kaizer, J. L.; McCulloch, P. D.; Ratcliffe, R.; Wenning, A. S. [Nova Scotia Dept. of Natural Resources, Halifax, NS (Canada)

    2000-07-01

    Activities of the Nova Scotia Registry of Mineral and Petroleum Titles are described, including statistical information about staking and mining activity in the province during 1999. In terms of activities, the Registry receives applications and issues licenses and leases for mineral and petroleum rights, receives statements of exploration expenditures and assessment reports that pertain to renewal of licenses and leases, maintains maps showing the disposition of lands under license or lease, and maintains a system of prospector registration. In addition, the Registry processes applications for underground gas storage rights and treasure trove rights and maintains a database of information concerning production and employment in Nova Scotia mines and quarries. At the end 1999 there were 230,660 hectares under exploration licence. Exploration expenditures, including engineering, economic and feasibility studies during 1999 totalled $4.2 million, mostly by junior mining companies searching for industrial mineral commodities. Mining activity during 1999 generated revenues of $340 million. Coal production dropped by 25 per cent, due mainly to the closure of the Phalen Mine. Gypsum production was up to 7.9 million tonnes; shipments of cement, barite and clay products also increased during 1999; salt production remained unchanged from 1998 with 842,000 tonnes. Production of construction aggregates totalled 10.6 million tonnes, down slightly from the year before. Mineral industry employment was roughly 2,500 persons, down by 24 per cent from 1998 levels, due primarily to the closure of the Phalen Mine.

  6. Review of 130 years of research on cyanobacteria in aquatic ecosystems in Serbia presented in a Serbian Cyanobacterial Database

    Directory of Open Access Journals (Sweden)

    Zorica Svirčev

    2017-05-01

    Full Text Available The presence of toxic cyanobacteria in aquatic ecosystems in the territory of the Republic of Serbia was surveyed over a period of several decades. Increasing attention is being paid to some negative consequences that may be caused by these microorganisms. Information from available literary sources regarding the distribution and frequency of cyanobacteria and their toxins over a period of 130 years, together with the effects on humans and wildlife in aquatic ecosystems, were gathered and incorporated into a Serbian Cyanobacterial Database created for the CYANOCOST Action. This database encompasses information on 65 aquatic ecosystems, including rivers, lakes, ponds, canals, irrigation reservoirs, reservoirs used for drinking water supply and reservoirs used for other purposes. Cyanobacterial blooms were found in almost 80% of the investigated aquatic ecosystems. The analysis of the research showed the presence of more than 70 species, including blooms of 24 species from 13 genera. Five species of cyanobacteria: Microcystis aeruginosa, Aphanizomenon flos-aquae, Planktothrix agardhii, Microcystis flos-aquae and Planktothrix rubescens frequently formed blooms in the investigated waterbodies and cyanotoxins were also detected in some of them, which had certain negative effects. Here, we present an overview of data contained in the Serbian Cyanobacterial Database, concerning cyanobacterial distribution, cyanotoxin production and associated biological effects in different types of water bodies from the Republic of Serbia. Also, recent important and major cases of cyanobacterial blooming in reservoirs used for drinking water supply: at Vrutci and Ćelije, the Aleksandrovac irrigation reservoir, the Ponjavica River and Lake Palić, including systematic research on the Lake Ludoš and few fishponds are further described. It can be concluded that cyanobacteria and cyanotoxins are omnipresent in different water bodies throughout the Republic of Serbia

  7. IAEA Coordinated Research Project on the Establishment of a Material Properties Database for Irradiated Core Structural Components for Continued Safe Operation and Lifetime Extension of Ageing Research Reactors

    Energy Technology Data Exchange (ETDEWEB)

    Borio Di Tigliole, A.; Schaaf, Van Der; Barnea, Y.; Bradley, E.; Morris, C.; Rao, D. V. H. [Research Reactor Section, Vianna (Australia); Shokr, A. [Research Reactor Safety Section, Vienna (Australia); Zeman, A. [International Atomic Energy Agency, Vienna (Australia)

    2013-07-01

    Today more than 50% of operating Research Reactors (RRs) are over 45 years old. Thus, ageing management is one of the most important issues to face in order to ensure availability (including life extension), reliability and safe operation of these facilities for the future. Management of the ageing process requires, amongst others, the predictions for the behavior of structural materials of primary components subjected to irradiation such as reactor vessel and core support structures, many of which are extremely difficult or impossible to replace. In fact, age-related material degradation mechanisms resulted in high profile, unplanned and lengthy shutdowns and unique regulatory processes of relicensing the facilities in recent years. These could likely have been prevented by utilizing available data for the implementation of appropriate maintenance and surveillance programmes. This IAEA Coordinated Research Project (CRP) will provide an international forum to establish a material properties Database for irradiated core structural materials and components. It is expected that this Database will be used by research reactor operators and regulators to help predict ageing related degradation. This would be useful to minimize unpredicted outages due to ageing processes of primary components and to mitigate lengthy and costly shutdowns. The Database will be a compilation of data from RRs operators' inputs, comprehensive literature reviews and experimental data from RRs. Moreover, the CRP will specify further activities needed to be addressed in order to bridge the gaps in the new created Database, for potential follow-on activities. As per today, 13 Member States (MS) confirmed their agreement to contribute to the development of the Database, covering a wide number of materials and properties. The present publication incorporates two parts: the first part includes details on the pre-CRP Questionnaire, including the conclusions drawn from the answers received from

  8. IAEA Coordinated Research Project on the Establishment of a Material Properties Database for Irradiated Core Structural Components for Continued Safe Operation and Lifetime Extension of Ageing Research Reactors

    International Nuclear Information System (INIS)

    Borio Di Tigliole, A.; Schaaf, Van Der; Barnea, Y.; Bradley, E.; Morris, C.; Rao, D. V. H.; Shokr, A.; Zeman, A.

    2013-01-01

    Today more than 50% of operating Research Reactors (RRs) are over 45 years old. Thus, ageing management is one of the most important issues to face in order to ensure availability (including life extension), reliability and safe operation of these facilities for the future. Management of the ageing process requires, amongst others, the predictions for the behavior of structural materials of primary components subjected to irradiation such as reactor vessel and core support structures, many of which are extremely difficult or impossible to replace. In fact, age-related material degradation mechanisms resulted in high profile, unplanned and lengthy shutdowns and unique regulatory processes of relicensing the facilities in recent years. These could likely have been prevented by utilizing available data for the implementation of appropriate maintenance and surveillance programmes. This IAEA Coordinated Research Project (CRP) will provide an international forum to establish a material properties Database for irradiated core structural materials and components. It is expected that this Database will be used by research reactor operators and regulators to help predict ageing related degradation. This would be useful to minimize unpredicted outages due to ageing processes of primary components and to mitigate lengthy and costly shutdowns. The Database will be a compilation of data from RRs operators' inputs, comprehensive literature reviews and experimental data from RRs. Moreover, the CRP will specify further activities needed to be addressed in order to bridge the gaps in the new created Database, for potential follow-on activities. As per today, 13 Member States (MS) confirmed their agreement to contribute to the development of the Database, covering a wide number of materials and properties. The present publication incorporates two parts: the first part includes details on the pre-CRP Questionnaire, including the conclusions drawn from the answers received from the MS

  9. The foundation of NCVD PCI Registry: the Malaysia's first multi-centre interventional cardiology project.

    Science.gov (United States)

    Liew, H B; Rosli, M A; Wan Azman, W A; Robaayah, Z; Sim, K H

    2008-09-01

    The National Cardiovascular Database for Percutaneous Coronary Intervention (NCVD PCI) Registry is the first multicentre interventional cardiology project, involving the main cardiac centres in the country. The ultimate goal of NCVD PCI is to provide a contemporary appraisal of PCI in Malaysia. This article introduces the foundation, the aims, methodology, database collection and preliminary results of the first six-month database.

  10. Assessing worldwide research activity on probiotics in pediatrics using Scopus database: 1994-2014.

    Science.gov (United States)

    Sweileh, Waleed M; Shraim, Naser Y; Al-Jabi, Samah W; Sawalha, Ansam F; Rahhal, Belal; Khayyat, Rasha A; Zyoud, Sa'ed H

    2016-01-01

    A wide variety of probiotic products has been introduced into the market in the past decade. Research trends and activity on probiotics help understand how these products were evolved and their potential future role in medicine. The objective of this study was to assess the research activity on probiotics in pediatrics using bibliometric indicators and network visualization. Original and review articles on probiotics in pediatrics published worldwide were retrieved from SciVerse, Scopus (1994-2014) and analyzed. VOSviewer was used for network visualization. The total number of documents published on probiotics in pediatrics was 2817. Research activity on probiotics in pediatrics showed approximately 90- fold increase during the study period. Approximately 22 % of published articles originated from USA and has the greatest share, however, Finland ranked first when data were stratified by population or income. The most productive institution in this field was Turku University in Finland with 82 (2.91 %) articles. Half of the prolific authors were also from Finland. Most of the published research activity appeared in Journal of Pediatric Gastroenterology and Nutrition. Most frequently encountered title terms include nutrition, infant formula, necrotizing enetrocolitis, allergy, and diarrhea. The total number of citations for the retreived documents documents was 70991, and the average citation per article was 25.20. Interest in probiotic research and its potential benefits in pediatric ailments is relatively recent but significantly increasing. Bibliometric analysis can be used as an indicator of the importance and growth of probiotic use in pediatrics.

  11. The HOPE (Helping to Outline Paediatric Eating Disorders) Project: development and debut of a paediatric clinical eating disorder registry

    Science.gov (United States)

    2013-01-01

    Background The HOPE (Helping to Outline Paediatric Eating Disorders) Project is an ongoing registry study made up of a sequential cross-sectional sample prospectively recruited over 17 years, and is designed to answer empirical questions about paediatric eating disorders. This paper introduces the HOPE Project, describes the registry sample to-date, and discusses future directions and challenges and accomplishments. The project and clinical service were established in a tertiary academic hospital in Western Australia in 1996 with a service development grant. Research processes were inbuilt into the initial protocols and data collection was maintained in the following years. Recognisable progress with the research agenda accelerated only when dedicated research resources were obtained. The registry sample consists of consecutive children and adolescents assessed at the eating disorder program from 1996 onward. Standardised multidisciplinary data collected from family intake interview, parent and child clinical interviews, medical review, parent, child and teacher psychometric assessments, and inpatient admission records populate the HOPE Project database. Results The registry database to-date contains 941 assessments, of whom 685 met DSM-IV diagnostic criteria for an eating disorder at admission. The majority of the sample were females (91%) from metropolitan Perth (83%). The cases with eating disorders consist of eating disorders not otherwise specified (68%), anorexia nervosa (25%) and bulimia nervosa (7%). Among those with eating disorders, a history of weight loss since illness onset was almost universal (96%) with fear of weight gain (71%) common, and the median duration of illness was 8 months. Conclusions Over the next five years and more, we expect that the HOPE Project will make a strong scientific contribution to paediatric eating disorders research and will have important real-world applications to clinical practice and policy as the research unfolds

  12. Establishment of the Fox Chase Network Breast Cancer Risk Registry

    National Research Council Canada - National Science Library

    Daly, Mary

    1997-01-01

    .... The development of the Fox Chase Cancer Center Breast Cancer Risk Registry was proposed to facilitate research in the epidemiologic and genetic predictors of disease and will permit evaluation...

  13. The bizzare phenomenon of smokers' paradox in the immediate outcome post acute myocardial infarction: an insight into the Malaysian National Cardiovascular Database-Acute Coronary Syndrome (NCVD-ACS) registry year 2006-2013.

    Science.gov (United States)

    Venkatason, Padmaa; Salleh, Norsabihin Mohd; Zubairi, Yong; Hafidz, Imran; Ahmad, Wan Azman Wan; Han, Sim Kui; Zuhdi, Ahmad Syadi Mahmood

    2016-01-01

    'Smoker's paradox' is a controversial phenomenon of an unexpected favourable outcome of smokers post acute myocardial infarction. There are conflicting evidences from the literature so far. We investigate for the existence of this phenomenon in our post acute myocardial infarction patients. We analysed 12,442 active smokers and 10,666 never-smokers diagnosed with STEMI and NSTEMI from the Malaysian National Cardiovascular Database-Acute Coronary Syndrome (NCVD-ACS) year 2006-2013 from 18 hospitals across Malaysia. Comparisons in the baseline characteristics, clinical presentation, in-hospital treatment and short term clinical outcome were made between the two groups. To compare the clinical outcome, an extensive multivariate adjustment was made to estimate the allcause mortality risk ratios for both groups. The active smokers were younger (smokers 53.7 years vs non-smokers 62.3 years P smokers and intravenous thrombolysis was the main reperfusion therapy in both groups. Smokers had a higher rate of in-hsopital coronary revascularisation in NSTEMI group (21.6 % smokers vs 16.7 % non-smokers P non-smokers in the STEMI group. Multivariate adjusted mortality risk ratios showed significantly lower mortality risks of smokers at both in-hospital (RR 0.510 [95 % CI 0.442-0.613]) and 30-day post discharge (RR 0.534 [95 % CI 0.437-0.621]). Smoking seems to be associated with a favourable outcome post myocardial infarction. The phenomenon of 'smoker's paradox' is in fact a reality in our patients population. The definitive explanation for this unexpected protective effect of smoking remains unclear.

  14. Overview of bryophyte flora research in Serbia with presentation of the Serbian BRYO database

    Directory of Open Access Journals (Sweden)

    Pantović Jovana

    2017-10-01

    Full Text Available Bryophyte flora research in Serbia was rather sporadic until the end of the 19th century, when a group of mostly high-school teachers started researching bryophytes. This was the first fruitful period of exploration, with many new country records. Thereafter, not many researchers investigated bryophytes in Serbia, and the majority of chorological data came from vegetation, ecological, or palaeobotanical studies. This lasted until the 1990s, when a revival of bryophyte investigation occurred, bringing with it many floristic studies and new species records for the country. At the present time, Serbia is considered to be rich in bryophyte diversity, with as many as 797 species. However, further study and a critical approach to the bryophyte flora of Serbia are needed.

  15. Chinese SLE Treatment and Research Group Registry: III. Association of Autoantibodies with Clinical Manifestations in Chinese Patients with Systemic Lupus Erythematosus

    Directory of Open Access Journals (Sweden)

    Jing Li

    2014-01-01

    Full Text Available We investigated the characteristics of Chinese SLE patients by analyzing the association between specific autoantibodies and clinical manifestations of 2104 SLE patients from registry data of CSTAR cohort. Significant (P<0.05 associations were found between anti-Sm antibody, anti-rRNP antibody, and malar rash; between anti-RNP antibody, anti-SSA antibody, and pulmonary arterial hypertension (PAH; between anti-SSB antibody and hematologic involvement; and between anti-dsDNA antibody and nephropathy. APL antibody was associated with hematologic involvement, interstitial lung disease, and a lower prevalence of oral ulcerations (P<0.05. Associations were also found between anti-dsDNA antibody and a lower prevalence of photosensitivity, and between anti-SSA antibody and a lower prevalence of nephropathy (P<0.05. Most of these findings were consistent with other studies in the literature but this study is the first report on the association between anti-SSA and a lower prevalence of nephropathy. The correlations of specific autoantibodies and clinical manifestations could provide clues for physicians to predict organ damages in SLE patients. We suggest that a thorough screening of autoantibodies should be carried out when the diagnosis of SLE is established, and repeated echocardiography annually in SLE patients with anti-RNP or anti-SSA antibody should be performed.

  16. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review.

    Directory of Open Access Journals (Sweden)

    Dewan Md Emdadul Hoque

    Full Text Available Clinical quality registries (CQRs are playing an increasingly important role in improving health outcomes and reducing health care costs. CQRs are established with the purpose of monitoring quality of care, providing feedback, benchmarking performance, describing pattern of treatment, reducing variation and as a tool for conducting research.To synthesise the impact of clinical quality registries (CQRs as an 'intervention' on (I mortality/survival; (II measures of outcome that reflect a process or outcome of health care; (III health care utilisation; and (IV healthcare-related costs.The following electronic databases were searched: MEDLINE, EMBASE, CENTRAL, CINAHL and Google Scholar. In addition, a review of the grey literature and a reference check of citations and reference lists within articles was undertaken to identify relevant studies in English covering the period January 1980 to December 2016. The PRISMA-P methodology, checklist and standard search strategy using pre-defined inclusion and exclusion criteria and structured data extraction tools were used. Data on study design and methods, participant characteristics attributes of included registries and impact of the registry on outcome measures and/or processes of care were extracted.We identified 30102 abstracts from which 75 full text articles were assessed and finally 17 articles were selected for synthesis. Out of 17 studies, six focused on diabetes care, two on cardiac diseases, two on lung diseases and others on organ transplantations, rheumatoid arthritis, ulcer healing, surgical complications and kidney disease. The majority of studies were "before after" design (#11 followed by cohort design (#2, randomised controlled trial (#2, experimental non randomised study and one cross sectional comparison. The measures of impact of registries were multifarious and included change in processes of care, quality of care, treatment outcomes, adherence to guidelines and survival. Sixteen of 17

  17. Comparison of Indian Council for Medical Research and Lunar Databases for Categorization of Male Bone Mineral Density.

    Science.gov (United States)

    Singh, Surya K; Patel, Vivek H; Gupta, Balram

    2017-06-19

    The mainstay of diagnosis of osteoporosis is dual-energy X-ray absorptiometry (DXA) scan measuring areal bone mineral density (BMD) (g/cm 2 ). The aim of the present study was to compare the Indian Council of Medical Research database (ICMRD) and the Lunar ethnic reference database of DXA scans in the diagnosis of osteoporosis in male patients. In this retrospective study, all male patients who underwent a DXA scan were included. The areal BMD (g/cm 2 ) was measured at either the lumbar spine (L1-L4) or the total hip using the Lunar DXA machine (software version 8.50) manufactured by GE Medical Systems (Shanghai, China). The Indian Council of Medical Research published a reference data for BMD in the Indian population derived from the population-based study conducted in healthy Indian individuals, which was used to analyze the BMD result by Lunar DXA scan. The 2 results were compared for various values using statistical software SPSS for Windows (version 16; SPSS Inc., Chicago, IL). A total 238 male patients with a mean age of 57.2 yr (standard deviation ±15.9) were included. Overall, 26.4% (66/250) and 2.8% (7/250) of the subjects were classified in the osteoporosis group according to the Lunar database and the ICMRD, respectively. Out of the 250 sites of the DXA scan, 28.8% (19/66) and 60.0% (40/66) of the cases classified as osteoporosis by the Lunar database were reclassified as normal and osteopenia by ICMRD, respectively. In conclusion, the Indian Council of Medical Research data underestimated the degree of osteoporosis in male subjects that might result in deferring of treatment. In view of the discrepancy, the decision on the treatment of osteoporosis should be based on the multiple fracture risk factors and less reliably on the BMD T-score. Copyright © 2017 The International Society for Clinical Densitometry. Published by Elsevier Inc. All rights reserved.

  18. Web server of the Centre for Photonuclear Experiments Data of the Scientific Research Institute for Nuclear Physics, Moscow State University: Hypertext version of the nuclear physics database

    Energy Technology Data Exchange (ETDEWEB)

    Boboshin, I N; Varlamov, A V; Varlamov, V V; Rudenko, D S; Stepanov, M E [D.V. Skobel' tsyn Scientific Research Institute for Nuclear Physics, M.V. Lomonosov Moscow State University, Centre for Photonuclear Experiments Data (Russian Federation)

    2001-02-01

    The nuclear databases which have been developed at the Centre for Photonuclear Experiments Data of the D.V. Skobel'tsyn Scientific Research Institute for Nuclear Physics, M.V. Lomonosov Moscow State University, and put on the Centre's web server, are presented. The possibilities for working with these databases on the Internet are described. (author)

  19. Web server of the Centre for Photonuclear Experiments Data of the Scientific Research Institute for Nuclear Physics, Moscow State University: Hypertext version of the nuclear physics database

    International Nuclear Information System (INIS)

    Boboshin, I.N.; Varlamov, A.V.; Varlamov, V.V.; Rudenko, D.S.; Stepanov, M.E.

    2001-01-01

    The nuclear databases which have been developed at the Centre for Photonuclear Experiments Data of the D.V. Skobel'tsyn Scientific Research Institute for Nuclear Physics, M.V. Lomonosov Moscow State University, and put on the Centre's web server, are presented. The possibilities for working with these databases on the Internet are described. (author)

  20. Research on the establishment of the database system for R and D on the innovative technology for the earth; Chikyu kankyo sangyo gijutsu kenkyu kaihatsuyo database system ni kansuru chosa

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1994-03-01

    For the purpose of structuring a database system of technical information about the earth environmental issues, the `database system for R and D of the earth environmental industrial technology` was operationally evaluated, and study was made to open it and structure a prototype of database. In the present state as pointed out in the operational evaluation, the utilization frequency is not heightened due to lack of UNIX experience, absence of system managers and shortage of utilizable articles listed, so that the renewal of database does not ideally progress. Therefore, study was then made to introduce tools utilizable by the initiators and open the information access terminal to the researchers at headquarters utilizing the internet. In order for the earth environment-related researchers to easily obtain the information, a database was prototypically structured to support the research exchange. Tasks were made clear to be taken for selecting the fields of research and compiling common thesauri in Japanese, Western and other languages. 28 figs., 16 tabs.

  1. Danish Prostate Cancer Registry

    DEFF Research Database (Denmark)

    Helgstrand, J Thomas; Klemann, Nina; Røder, Martin Andreas

    2016-01-01

    of SNOMED codes were identified. A computer algorithm was developed to transcode SNOMED codes into an analyzable format including procedure (eg, biopsy, transurethral resection, etc), diagnosis, and date of diagnosis. For validation, ~55,000 pathological reports were manually reviewed. Prostate-specific...... antigen, vital status, causes of death, and tumor-node-metastasis classification were integrated from national registries. RESULTS: Of the 161,525 specimens from 113,801 males identified, 83,379 (51.6%) were sets of prostate biopsies, 56,118 (34.7%) were transurethral/transvesical resections......BACKGROUND: Systematized Nomenclature of Medicine (SNOMED) codes are computer-processable medical terms used to describe histopathological evaluations. SNOMED codes are not readily usable for analysis. We invented an algorithm that converts prostate SNOMED codes into an analyzable format. We...

  2. A Heuristic Approach to Author Name Disambiguation in Bibliometrics Databases for Large-scale Research Assessments

    NARCIS (Netherlands)

    D'Angelo, C.A.; Giuffrida, C.; Abramo, G.

    2011-01-01

    National exercises for the evaluation of research activity by universities are becoming regular practice in ever more countries. These exercises have mainly been conducted through the application of peer-review methods. Bibliometrics has not been able to offer a valid large-scale alternative because

  3. 77 FR 66622 - Submission for OMB Review; Comment Request: National Database for Autism Research (NDAR) Data...

    Science.gov (United States)

    2012-11-06

    ... purposes. There are no capital, operating, and/or maintenance costs to the respondents. There are two...) Data Access Request. Type of Information Collection Request: 0925-NEW. Need and Use of Information.... Frequency of Response: Once per request. Affected Public: Individuals. Type of Respondents: Researchers...

  4. Establishing an international reference image database for research and development in medical image processing

    NARCIS (Netherlands)

    Horsch, A.D.; Prinz, M.; Schneider, S.; Sipilä, O; Spinnler, K.; Vallée, J-P; Verdonck-de Leeuw, I; Vogl, R.; Wittenberg, T.; Zahlmann, G.

    2004-01-01

    INTRODUCTION: The lack of comparability of evaluation results is one of the major obstacles of research and development in Medical Image Processing (MIP). The main reason for that is the usage of different image datasets with different quality, size and Gold standard. OBJECTIVES: Therefore, one of

  5. The Energy Science and Technology Database on a local library system: A case study at the Los Alamos National Research Library

    Energy Technology Data Exchange (ETDEWEB)

    Holtkamp, I.S.

    1994-10-01

    This paper presents an overview of efforts at Los Alamos National Laboratory to acquire and mount the Energy Science and Technology Database (EDB) as a citation database on the Research Library`s Geac Advance system. The rationale for undertaking this project and expected benefits are explained. Significant issues explored are loading non-USMARC records into a MARC-based library system, the use of EDB records to replace or supplement in-house cataloging of technical reports, the impact of different cataloging standards and database size on searching and retrieval, and how integrating an external database into the library`s online catalog may affect staffing and workflow.

  6. Users manual on database of the Piping Reliability Proving Tests at the Japan Atomic Energy Research Institute

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-09-01

    Japan Atomic Energy Research Institute(JAERI) conducted Piping Reliability Proving Tests from 1975 to 1992 based upon the contracts between JAERI and Science and Technology Agency of Japan under the auspices of the special account law for electric power development promotion. The purposes of those tests are to prove the structural reliability of the primary cooling piping constituting a part of the pressure boundary in the water reactor power plants. The tests with large experimental facilities had ended already in 1990. After that piping reliability analysis by the probabilistic method followed until 1992. This report describes the users manual on databases about the test results using the large experimental facilities. Objectives of the piping reliability proving tests are to prove that the primary piping of the water reactor (1) be reliable throughout the service period, (2) have no possibility of rupture, (3) bring no detrimental influence on the surrounding instrumentations or equipments near the break location. The research activities using large scale piping test facilities are described. The present report does the database about the test results pairing the former report. With these two reports, all the feature of Piping Reliability Proving Tests is made clear. Briefings of the tests are described also written in Japanese or English. (author)

  7. [Research and development of medical case database: a novel medical case information system integrating with biospecimen management].

    Science.gov (United States)

    Pan, Shiyang; Mu, Yuan; Wang, Hong; Wang, Tong; Huang, Peijun; Ma, Jianfeng; Jiang, Li; Zhang, Jie; Gu, Bing; Yi, Lujiang

    2010-04-01

    To meet the needs of management of medical case information and biospecimen simultaneously, we developed a novel medical case information system integrating with biospecimen management. The database established by MS SQL Server 2000 covered, basic information, clinical diagnosis, imaging diagnosis, pathological diagnosis and clinical treatment of patient; physicochemical property, inventory management and laboratory analysis of biospecimen; users log and data maintenance. The client application developed by Visual C++ 6.0 was used to implement medical case and biospecimen management, which was based on Client/Server model. This system can perform input, browse, inquest, summary of case and related biospecimen information, and can automatically synthesize case-records based on the database. Management of not only a long-term follow-up on individual, but also of grouped cases organized according to the aim of research can be achieved by the system. This system can improve the efficiency and quality of clinical researches while biospecimens are used coordinately. It realizes synthesized and dynamic management of medical case and biospecimen, which may be considered as a new management platform.

  8. Collaborative research between academia and industry using a large clinical trial database: a case study in Alzheimer's disease

    Directory of Open Access Journals (Sweden)

    Jones Roy

    2011-10-01

    Full Text Available Abstract Background Large clinical trials databases, developed over the course of a comprehensive clinical trial programme, represent an invaluable resource for clinical researchers. Data mining projects sponsored by industry that use these databases, however, are often not viewed favourably in the academic medical community because of concerns that commercial, rather than scientific, goals are the primary purpose of such endeavours. Thus, there are few examples of sustained collaboration between leading academic clinical researchers and industry professionals in a large-scale data mining project. We present here a successful example of this type of collaboration in the field of dementia. Methods The Donepezil Data Repository comprised 18 randomised, controlled trials conducted between 1991 and 2005. The project team at Pfizer determined that the data mining process should be guided by a diverse group of leading Alzheimer's disease clinical researchers called the "Expert Working Group." After development of a list of potential faculty members, invitations were extended and a group of seven members was assembled. The Working Group met regularly with Eisai/Pfizer clinicians and statisticians to discuss the data, identify issues that were currently of interest in the academic and clinical communities that might lend themselves to investigation using these data, and note gaps in understanding or knowledge of Alzheimer's disease that these data could address. Leadership was provided by the Pfizer Clinical Development team leader; Working Group members rotated responsibility for being lead and co-lead for each investigation and resultant publication. Results Six manuscripts, each published in a leading subspecialty journal, resulted from the group's work. Another project resulted in poster presentations at international congresses and two were cancelled due to resource constraints. Conclusions The experience represents a particular approach to

  9. ANALYTICAL ISSUES OF RISK COMMUNICATION. RATIONALE FOR APPROACHES TO DEVELOPING RESEARCH DATABASES ON RADIATION SAFETY AND SOCIAL RISKS

    Directory of Open Access Journals (Sweden)

    L. S. Rekhtina

    2017-01-01

    Full Text Available One of the important stages of risk communication is the analysis of publications in traditional media and the Internet, which largely shape people’s attitudes to various issues. At the same time, the availability of large amounts of information relating to any subject area complicates the possibility of manual analysis and adequate description of all of the information. On the other hand, the availability of information causes the urgency of developing methods to improve the effectiveness of its analysis. One way to automate the analysis of large amounts of information is the development of databases or automated information systems containing information materials on the subject matter under study and suggesting the possibility of automated processing. The objective of this work is to analyze the experience of developing such systems and databases by the research teams of the St. Petersburg Institute of Radiation Hygiene and St. Petersburg State University and to identify key features of the use of bases Data for social research. The results of the analysis showed that the methodological approaches used were very close. The analysis is performed according to the method of autoethnographical research. The strategy application of the comparative analysis allows identifying common features characterizing the situation of development and implementation of databases to practice of the risk communication studies. The article discusses the features associated with them, the limitations of the primary data, such as text, discursive nature of most of the materials, information noise, high dependence on context, variability, different structure, format and appearance of materials. The important parameters for solving problems of the qualitative and quantitative analysis are given in the article. An important condition of creating effective, from the point of view of socio-communication studies information system is to implement the processing

  10. Research Methods in Healthcare Epidemiology and Antimicrobial Stewardship: Use of Administrative and Surveillance Databases.

    Science.gov (United States)

    Drees, Marci; Gerber, Jeffrey S; Morgan, Daniel J; Lee, Grace M

    2016-11-01

    Administrative and surveillance data are used frequently in healthcare epidemiology and antimicrobial stewardship (HE&AS) research because of their wide availability and efficiency. However, data quality issues exist, requiring careful consideration and potential validation of data. This methods paper presents key considerations for using administrative and surveillance data in HE&AS, including types of data available and potential use, data limitations, and the importance of validation. After discussing these issues, we review examples of HE&AS research using administrative data with a focus on scenarios when their use may be advantageous. A checklist is provided to help aid study development in HE&AS using administrative data. Infect Control Hosp Epidemiol 2016;1-10.

  11. The process of installing REDCap, a web based database supporting biomedical research: the first year.

    Science.gov (United States)

    Klipin, M; Mare, I; Hazelhurst, S; Kramer, B

    2014-01-01

    Clinical and research data are essential for patient care, research and healthcare system planning. REDCapTM is a web-based tool for research data curatorship developed at Vanderbilt University in Nashville, USA. The Faculty of Health Sciences at the University of the Witwatersrand, Johannesburg South Africa identified the need for a cost effective data management instrument. REDCap was installed as per the user agreement with Vanderbilt University in August 2012. In order to assist other institutions that may lack the in-house Information Technology capacity, this paper describes the installation and support of REDCap and incorporates an analysis of user uptake over the first year of use. We reviewed the staffing requirements, costs of installation, process of installation and necessary infrastructure and end-user requests following the introduction of REDCap at Wits. The University Legal Office and Human Research Ethics Committee were consulted regarding the REDCap end-user agreement. Bi-monthly user meetings resulted in a training workshop in August 2013. We compared our REDCap software user numbers and records before and after the first training workshop. Human resources were recruited from existing staff. Installation costs were limited to servers and security certificates. The total costs to provide a functional REDCap platform was less than $9000. Eighty-one (81) users were registered in the first year. After the first training workshop the user numbers increased by 59 in one month and the total number of active users to 140 by the end of August 2013. Custom software applications for REDCap were created by collaboration between clinicians and software developers. REDCap was installed and maintained at limited cost. A small number of people with defined skills can support multiple REDCap users in two to four hours a week. End user training increased in the number of users, number of projects created and the number of projects moved to production.

  12. Formation of Ground Truth Databases and Related Studies and Regional Seismic Monitoring Research

    Science.gov (United States)

    2006-06-01

    experiments (1997-1999) in the former Semipalatinsk test site , Proceedings of the 22nd Annual DoDLDOE Seismic Research Symposium, Vol. I, U. S. Department of...DefenselEnergy, 55-66. Kim, Won-Young (1998), Waveform Data Information Product: Calibration Explosions at Semipalatinsk Test Site , Kazakstan...from the aftershocks of a 100 ton chemical explosion at the Degelen, Kazakh Test Site on 22 August 1998 (Omega-1). Epicentral locations, based on P

  13. NITARP: An Example of Effective Data-Based Research in the Classroom

    Science.gov (United States)

    Orr, Laura; Rowe, Jamie L.; Lineberger, Howard; Duranko, Gary; Gorjian, Varoujan

    2018-01-01

    The use of data in the classroom is a core component of both project based learning and STEM based education. Authentic student driven research using real-world data is a primary focus of both teaching strategies. To make the educational outcome effective and long lasting, the type and quality of data used in the lessons is important. The NASA/IPAC Teacher Archive Research Project (NITARP) program encapsulates this in very meaningful ways by providing both teachers and students the opportunity to ask deep meaningful questions, collaborate with peers, and arrive at meaningful conclusions. Teachers trained in the use of scientific archives and the application of those archives for authentic research is critical for this type of learning to be successful.In this study we use the NITARP program as an example of effective STEM project based learning using archived scientific data. We explore the components of the program that are most effective, the effects on teacher competency and ease of use with students, and use in the classroom. For each area we also explore alternate sources of teacher support, data archives, and techniques for implementation in classrooms for various topics and skill levels.

  14. Summary report of second research coordination meeting on development of a reference database for ion beam analysis

    International Nuclear Information System (INIS)

    Vickridge, Ian; Schwerer, Otto

    2007-07-01

    Highlights of the 2nd Research Coordination Meeting (RCM) are given with respect to the progress achieved in the first 1 1/2 years of the Co-ordinated Research Project (CRP) on Development of a Reference Database for Ion Beam Analysis. Participants presented the results of their work to date, and identified and assigned key tasks required to ensure that the final output of the CRP is achieved. In addition, a number of lively and productive discussions took place concerning technical issues such as accelerator energy calibration, error reporting, accuracy of the existing IBANDL and EXFOR datasets for IBA, and procedures for producing recommended cross-section data. The main conclusions as well as lists of actions and tasks are presented in this report. (author)

  15. The Danish National Multiple Myeloma Registry

    DEFF Research Database (Denmark)

    Gimsing, Peter; Holmström, Morten Orebo; Klausen, Tobias Wirenfelt

    2016-01-01

    AIM: The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim...... diagnosed patients with multiple myeloma (MM), smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome......), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. MAIN VARIABLES: The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events...

  16. [Databases for surgical specialists in Cancún, Quintana Roo].

    Science.gov (United States)

    Contla-Hosking, Jorge Eduardo; Ceballos-Martínez, Zoila Inés; Peralta-Bahena, Mónica Esther

    2004-01-01

    Our aim was to identify the level of knowledge of surgical health-area specialists in Cancún, Quintana Roo, Mexico, from the personal productivity database. We carried out an investigation of 37 surgical specialists: 24 belonged to the Mexican Social Security Institute (IMSS), while 13 belonged to the Mexican Health Secretariat (SSA). In our research, we found that 61% of surgical health-area specialist physicians were familiar with some aspects of the institutional surgical registry, including the following: 54% knew of the existence of a personal registry of surgeries carried out, and 43% keep a record of their personal activities. From the latter percentage, 69% of surgical health-area specialist physicians mentioned keeping their records manually, while 44% used the computer. Results of the research suggest that these physicians would like to have some kind of record of the surgeries carried out by each. An important percentage of these specialists do not keep a personal record on a database; due to this lack of knowledge, we obtain incorrect information in institutional records of the reality of what is actually done. We consider it important to inform surgical specialists concerning the existence of personal institutional records in database form or even of record done manually, as well as correct terminology for the International Codification (CIE-9 & 10). We inform here of the need to encourage a culture in records and databases in the formative stage of surgeon specialists.

  17. Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

    Science.gov (United States)

    Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

    2018-02-01

    The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

  18. Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?

    Science.gov (United States)

    Warnell, F; George, B; McConachie, H; Johnson, M; Hardy, R; Parr, J R

    2015-09-04

    (1) Describe how the Autism Spectrum Database-UK (ASD-UK) was established; (2) investigate the representativeness of the first 1000 children and families who participated, compared to those who chose not to; (3) investigate the reliability of the parent-reported Autism Spectrum Disorder (ASD) diagnoses, and present evidence about the validity of diagnoses, that is, whether children recruited actually have an ASD; (4) present evidence about the representativeness of the ASD-UK children and families, by comparing their characteristics with the first 1000 children and families from the regional Database of children with ASD living in the North East (Dasl(n)e), and children and families identified from epidemiological studies. Recruitment through a network of 50 UK child health teams and self-referral. Parents/carers with a child with ASD, aged 2-16 years, completed questionnaires about ASD and some gave professionals' reports about their children. 1000 families registered with ASD-UK in 30 months. Children of families who participated, and of the 208 who chose not to, were found to be very similar on: gender ratio, year of birth, ASD diagnosis and social deprivation score. The reliability of parent-reported ASD diagnoses of children was very high when compared with clinical reports (over 96%); no database child without ASD was identified. A comparison of gender, ASD diagnosis, age at diagnosis, school placement, learning disability, and deprivation score of children and families from ASD-UK with 1084 children and families from Dasl(n)e, and families from population studies, showed that ASD-UK families are representative of families of children with ASD overall. ASD-UK includes families providing parent-reported data about their child and family, who appear to be broadly representative of UK children with ASD. Families continue to join the databases and more than 3000 families can now be contacted by researchers about UK autism research. Published by the BMJ

  19. MaizeGDB: The Maize Model Organism Database for Basic, Translational, and Applied Research

    OpenAIRE

    Lawrence, Carolyn J.; Harper, Lisa C.; Schaeffer, Mary L.; Sen, Taner Z.; Seigfried, Trent E.; Campbell, Darwin A.

    2008-01-01

    In 2001 maize became the number one production crop in the world with the Food and Agriculture Organization of the United Nations reporting over 614 million tonnes produced. Its success is due to the high productivity per acre in tandem with a wide variety of commercial uses. Not only is maize an excellent source of food, feed, and fuel, but also its by-products are used in the production of various commercial products. Maize's unparalleled success in agriculture stems from basic research, th...

  20. Database Description - KOME | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available base Description General information of database Database name KOME Alternative nam... Sciences Plant Genome Research Unit Shoshi Kikuchi E-mail : Database classification Plant databases - Rice ...Organism Taxonomy Name: Oryza sativa Taxonomy ID: 4530 Database description Information about approximately ...Hayashizaki Y, Kikuchi S. Journal: PLoS One. 2007 Nov 28; 2(11):e1235. External Links: Original website information Database...OS) Rice mutant panel database (Tos17) A Database of Plant Cis-acting Regulatory

  1. KALIMER database development

    Energy Technology Data Exchange (ETDEWEB)

    Jeong, Kwan Seong; Lee, Yong Bum; Jeong, Hae Yong; Ha, Kwi Seok

    2003-03-01

    KALIMER database is an advanced database to utilize the integration management for liquid metal reactor design technology development using Web applications. KALIMER design database is composed of results database, Inter-Office Communication (IOC), 3D CAD database, and reserved documents database. Results database is a research results database during all phase for liquid metal reactor design technology development of mid-term and long-term nuclear R and D. IOC is a linkage control system inter sub project to share and integrate the research results for KALIMER. 3D CAD database is a schematic overview for KALIMER design structure. And reserved documents database is developed to manage several documents and reports since project accomplishment.

  2. KALIMER database development

    International Nuclear Information System (INIS)

    Jeong, Kwan Seong; Lee, Yong Bum; Jeong, Hae Yong; Ha, Kwi Seok

    2003-03-01

    KALIMER database is an advanced database to utilize the integration management for liquid metal reactor design technology development using Web applications. KALIMER design database is composed of results database, Inter-Office Communication (IOC), 3D CAD database, and reserved documents database. Results database is a research results database during all phase for liquid metal reactor design technology development of mid-term and long-term nuclear R and D. IOC is a linkage control system inter sub project to share and integrate the research results for KALIMER. 3D CAD database is a schematic overview for KALIMER design structure. And reserved documents database is developed to manage several documents and reports since project accomplishment

  3. Huntington's disease and its therapeutic target genes: a global functional profile based on the HD Research Crossroads database.

    Science.gov (United States)

    Kalathur, Ravi Kiran Reddy; Hernández-Prieto, Miguel A; Futschik, Matthias E

    2012-06-28

    Huntington's disease (HD) is a fatal progressive neurodegenerative disorder caused by the expansion of the polyglutamine repeat region in the huntingtin gene. Although the disease is triggered by the mutation of a single gene, intensive research has linked numerous other genes to its pathogenesis. To obtain a systematic overview of these genes, which may serve as therapeutic targets, CHDI Foundation has recently established the HD Research Crossroads database. With currently over 800 cataloged genes, this web-based resource constitutes the most extensive curation of genes relevant to HD. It provides us with an unprecedented opportunity to survey molecular mechanisms involved in HD in a holistic manner. To gain a synoptic view of therapeutic targets for HD, we have carried out a variety of bioinformatical and statistical analyses to scrutinize the functional association of genes curated in the HD Research Crossroads database. In particular, enrichment analyses were performed with respect to Gene Ontology categories, KEGG signaling pathways, and Pfam protein families. For selected processes, we also analyzed differential expression, using published microarray data. Additionally, we generated a candidate set of novel genetic modifiers of HD by combining information from the HD Research Crossroads database with previous genome-wide linkage studies. Our analyses led to a comprehensive identification of molecular mechanisms associated with HD. Remarkably, we not only recovered processes and pathways, which have frequently been linked to HD (such as cytotoxicity, apoptosis, and calcium signaling), but also found strong indications for other potentially disease-relevant mechanisms that have been less intensively studied in the context of HD (such as the cell cycle and RNA splicing, as well as Wnt and ErbB signaling). For follow-up studies, we provide a regularly updated compendium of molecular mechanism, that are associated with HD, at http://hdtt.sysbiolab.eu Additionally

  4. Huntington's Disease and its therapeutic target genes: a global functional profile based on the HD Research Crossroads database

    Directory of Open Access Journals (Sweden)

    Kalathur Ravi Kiran

    2012-06-01

    Full Text Available Abstract Background Huntington’s disease (HD is a fatal progressive neurodegenerative disorder caused by the expansion of the polyglutamine repeat region in the huntingtin gene. Although the disease is triggered by the mutation of a single gene, intensive research has linked numerous other genes to its pathogenesis. To obtain a systematic overview of these genes, which may serve as therapeutic targets, CHDI Foundation has recently established the HD Research Crossroads database. With currently over 800 cataloged genes, this web-based resource constitutes the most extensive curation of genes relevant to HD. It provides us with an unprecedented opportunity to survey molecular mechanisms involved in HD in a holistic manner. Methods To gain a synoptic view of therapeutic targets for HD, we have carried out a variety of bioinformatical and statistical analyses to scrutinize the functional association of genes curated in the HD Research Crossroads database. In particular, enrichment analyses were performed with respect to Gene Ontology categories, KEGG signaling pathways, and Pfam protein families. For selected processes, we also analyzed differential expression, using published microarray data. Additionally, we generated a candidate set of novel genetic modifiers of HD by combining information from the HD Research Crossroads database with previous genome-wide linkage studies. Results Our analyses led to a comprehensive identification of molecular mechanisms associated with HD. Remarkably, we not only recovered processes and pathways, which have frequently been linked to HD (such as cytotoxicity, apoptosis, and calcium signaling, but also found strong indications for other potentially disease-relevant mechanisms that have been less intensively studied in the context of HD (such as the cell cycle and RNA splicing, as well as Wnt and ErbB signaling. For follow-up studies, we provide a regularly updated compendium of molecular mechanism, that are

  5. Heart research advances using database search engines, Human Protein Atlas and the Sydney Heart Bank.

    Science.gov (United States)

    Li, Amy; Estigoy, Colleen; Raftery, Mark; Cameron, Darryl; Odeberg, Jacob; Pontén, Fredrik; Lal, Sean; Dos Remedios, Cristobal G

    2013-10-01

    This Methodological Review is intended as a guide for research students who may have just discovered a human "novel" cardiac protein, but it may also help hard-pressed reviewers of journal submissions on a "novel" protein reported in an animal model of human heart failure. Whether you are an expert or not, you may know little or nothing about this particular protein of interest. In this review we provide a strategic guide on how to proceed. We ask: How do you discover what has been published (even in an abstract or research report) about this protein? Everyone knows how to undertake literature searches using PubMed and Medline but these are usually encyclopaedic, often producing long lists of papers, most of which are either irrelevant or only vaguely relevant to your query. Relatively few will be aware of more advanced search engines such as Google Scholar and even fewer will know about Quertle. Next, we provide a strategy for discovering if your "novel" protein is expressed in the normal, healthy human heart, and if it is, we show you how to investigate its subcellular location. This can usually be achieved by visiting the website "Human Protein Atlas" without doing a single experiment. Finally, we provide a pathway to discovering if your protein of interest changes its expression level with heart failure/disease or with ageing. Crown Copyright © 2013. Published by Elsevier B.V. All rights reserved.

  6. Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource for Patient-Reported Outcomes Research in Older Adults with Cancer.

    Science.gov (United States)

    Kent, Erin E; Malinoff, Rochelle; Rozjabek, Heather M; Ambs, Anita; Clauser, Steven B; Topor, Marie A; Yuan, Gigi; Burroughs, James; Rodgers, Anne B; DeMichele, Kimberly

    2016-01-01

    Researchers and clinicians are increasingly recognizing the value of patient-reported outcome (PRO) data to better characterize people's health and experiences with illness and care. Considering the rising prevalence of cancer in adults aged 65 and older, PRO data are particularly relevant for older adults with cancer, who often require complex cancer care and have additional comorbid conditions. A data linkage between the Surveillance Epidemiology and End Results (SEER) cancer registry and the Medicare Health Outcomes Survey (MHOS) was created through a partnership between the National Cancer Institute and the Centers for Medicare and Medicaid Services that created the opportunity to examine PROs in Medicare Advantage enrollees with and without cancer. The December 2013 linkage of SEER-MHOS data included the linked data for 12 cohorts, bringing the number of individuals in the linked data set to 95,723 with cancer and 1,510,127 without. This article reviews the features of the resource and provides information on some descriptive characteristics of the individuals in the data set (health-related quality of life, body mass index, fall risk management, number of unhealthy days in the past month). Individuals without (n=258,108) and with (n=3,440) cancer (1,311 men with prostate cancer, 982 women with breast cancer, 689 with colorectal cancer, 458 with lung cancer) were included in the current descriptive analysis. Given increasing longevity, advances in effective therapies and earlier detection, and population growth, the number of individuals aged 65 and older with cancer is expected to reach more than 12 million by 2020. SEER-MHOS provides population-level, self-reported, cancer registry-linked data for person-centered surveillance research on this growing population. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  7. The epidemiology and burden of Alzheimer’s disease in Taiwan utilizing data from the National Health Insurance Research Database

    Science.gov (United States)

    Hung, Yen-Ni; Kadziola, Zbigniew; Brnabic, Alan JM; Yeh, Ju-Fen; Fuh, Jong-Ling; Hwang, Jen-Ping; Montgomery, William

    2016-01-01

    Purpose The objectives of this study were to estimate the incidence, cumulative incidence, and economic burden of Alzheimer’s disease (AD) in Taiwan, using data from the National Health Insurance Research Database (NHIRD). Materials and methods This was a retrospective, longitudinal, observational study using data from the Longitudinal Health Insurance Database of the NHIRD. Patients were included in this study if they were 50 years of age or older and their records included a primary or secondary diagnosis of AD. New patients who met inclusion criteria were followed up longitudinally from 2005 to 2010. Costs were calculated for the first year following the diagnosis of AD. Results Overall, a higher percentage of women than men were diagnosed with AD (54% vs 46%, respectively). The first AD diagnosis occurred most frequently in the age of 75–84 years. The person-year incidence rate increased from 5.63/1,000 persons (95% CI, 5.32–5.94) in 2005 to 8.17/1,000 persons (95% CI, 7.78–8.57) in 2010. The cumulative incidence rate was 33.54/1,000 persons (95% CI, 32.76–34.33) in 2005–2010. The total mean inflated annual costs per patient in new Taiwan dollars (NT$) in the first year of diagnosis ranged from NT$205,413 (2009) to NT$227,110 (2005), with hospitalization representing the largest component. Conclusion AD represents a substantial burden in Taiwan, and based on the observed increase in incidence rate over time, it is likely that this burden will continue to increase. The findings reported here are consistent with previous research. The NHIRD contains extensive real-world information that can be used to conduct research, allowing us to expand our understanding of the incidence, prevalence, and burden of disease in Taiwan. PMID:27536149

  8. Comparative research performance of top universities from the northeastern Brazil on three pharmacological disciplines as seen in scopus database

    Directory of Open Access Journals (Sweden)

    Jean P. Kamdem, PhD

    2017-12-01

    Full Text Available Objectives: Postgraduate programmes around the world are periodically subjected to research performance evaluation through bibliometric indicators. In this research, we characterized and compared the research performance of 15 universities from Northeastern Brazil, in which 13 were among the top Universities of the Latin America. Methods: Specifically, total documents, citations and the h-index of each university were retrieved from the Elsevier Scopus database and were analysed not only for historical scientific achievement but also across the period of the past 6 years (2010–2015. Using these bibliometric indicators, we also investigated the performance of programmes at these Universities that have their papers indexed in the Scopus database under the category of “Pharmacology, Toxicology and Pharmaceuticals” for the same period. Results: We found that the Federal University of Pernambuco (UFPE and the Federal University of Ceará (UFC were the most productive institutions, producing 17847 and 15048 documents, respectively. The number of papers published by each of these universities in the past six years represented more than 50% of their entire productivity. With regards to their scientific output in “Pharmacology, Toxicology and Pharmaceutics”, UFC showed the highest number of published documents followed by UFPE and the Federal University of Paraíba (UFPB. UFC received the highest h-index (with and without self-citations and number of citations and shared their most cited papers with foreign institutions from the USA and Germany. However, papers from UFC were published in journals with lower impact factors (2.322. Conclusions: The present study shows where each of these universities stands and can be helpful in identifying potential collaborators in these areas of knowledge. Keywords: Citations, CNPq, h-index, Northeastern Brazil, UFC

  9. Phynx: an open source software solution supporting data management and web-based patient-level data review for drug safety studies in the general practice research database and other health care databases.

    Science.gov (United States)

    Egbring, Marco; Kullak-Ublick, Gerd A; Russmann, Stefan

    2010-01-01

    To develop a software solution that supports management and clinical review of patient data from electronic medical records databases or claims databases for pharmacoepidemiological drug safety studies. We used open source software to build a data management system and an internet application with a Flex client on a Java application server with a MySQL database backend. The application is hosted on Amazon Elastic Compute Cloud. This solution named Phynx supports data management, Web-based display of electronic patient information, and interactive review of patient-level information in the individual clinical context. This system was applied to a dataset from the UK General Practice Research Database (GPRD). Our solution can be setup and customized with limited programming resources, and there is almost no extra cost for software. Access times are short, the displayed information is structured in chronological order and visually attractive, and selected information such as drug exposure can be blinded. External experts can review patient profiles and save evaluations and comments via a common Web browser. Phynx provides a flexible and economical solution for patient-level review of electronic medical information from databases considering the individual clinical context. It can therefore make an important contribution to an efficient validation of outcome assessment in drug safety database studies.

  10. The Danish Intensive Care Database

    Directory of Open Access Journals (Sweden)

    Christiansen CF

    2016-10-01

    Full Text Available Christian Fynbo Christiansen,1 Morten Hylander Møller,2 Henrik Nielsen,1 Steffen Christensen3 1Department of Clinical Epidemiology, Institute of Clinical Medicine, Aarhus University Hospital, Aarhus, 2Department of Intensive Care 4131, Copenhagen University Hospital Rigshospitalet, Copenhagen, 3Department of Intensive Care, Aarhus University Hospital, Aarhus, Denmark Aim of database: The aim of this database is to improve the quality of care in Danish intensive care units (ICUs by monitoring key domains of intensive care and to compare these with predefined standards. Study population: The Danish Intensive Care Database (DID was established in 2007 and includes virtually all ICU admissions in Denmark since 2005. The DID obtains data from the Danish National Registry of Patients, with complete follow-up through the Danish Civil Registration System. Main variables: For each ICU admission, the DID includes data on the date and time of ICU admission, type of admission, organ supportive treatments, date and time of discharge, status at discharge, and mortality up to 90 days after admission. Descriptive variables include age, sex, Charlson comorbidity index score, and, since 2010, the Simplified Acute Physiology Score (SAPS II. The variables are recorded with 90%–100% completeness in the recent years, except for SAPS II score, which is 73%–76% complete. The DID currently includes five quality indicators. Process indicators include out-of-hour discharge and transfer to other ICUs for capacity reasons. Outcome indicators include ICU readmission within 48 hours and standardized mortality ratios for death within 30 days after admission using case-mix adjustment (initially using age, sex, and comorbidity level, and, since 2013, using SAPS II for all patients and for patients with septic shock. Descriptive data: The DID currently includes 335,564 ICU admissions during 2005–2015 (average 31,958 ICU admissions per year. Conclusion: The DID provides a

  11. Database Description - SAHG | LSDB Archive [Life Science Database Archive metadata

    Lifescience Database Archive (English)

    Full Text Available base Description General information of database Database name SAHG Alternative nam...h: Contact address Chie Motono Tel : +81-3-3599-8067 E-mail : Database classification Structure Databases - ...e databases - Protein properties Organism Taxonomy Name: Homo sapiens Taxonomy ID: 9606 Database description... Links: Original website information Database maintenance site The Molecular Profiling Research Center for D...stration Not available About This Database Database Description Download License Update History of This Database Site Policy | Contact Us Database Description - SAHG | LSDB Archive ...

  12. Patterns of severe injury in pediatric car crash victims: Crash Injury Research Engineering Network database.

    Science.gov (United States)

    Brown, J Kristine; Jing, Yuezhou; Wang, Stewart; Ehrlich, Peter F

    2006-02-01

    Motor vehicle crashes (MVCs) account for 50% of pediatric trauma. Safety improvements are typically tested with child crash dummies using an in vitro model. The Crash Injury Research Engineering Network (CIREN) provides an in vivo validation process. Previous research suggest that children in lateral crashes or front-seat locations have higher Injury Severity Scale scores and lower Glasgow Coma Scale scores than those in frontal-impact crashes. However, specific injury patterns and crash characteristics have not been characterized. Data were collected from the CIREN multidisciplinary crash reconstruction network (10 pediatric trauma centers). Injuries were examined with regard to crash direction (frontal/lateral), restraint use, seat location, and change in velocity at impact (DeltaV). Injuries were limited to Abbreviated Injury Scale (AIS) scores of 3 or higher and included head, thoracic, abdominal, pelvic, spine, and long bone (orthopedic) injuries. Standard age groupings (0-4, 5-9, 10-14, and 15-18 years) were used. Statistical analyses used Fisher's Exact test and multiple logistic regressions. Four hundred seventeen MVCs with 2500 injuries were analyzed (males = 219, females = 198). Controlling for DeltaV and age, children in lateral-impact crashes (n = 232) were significantly more likely to suffer severe injuries to the head and thorax as compared with children in frontal crashes (n = 185), who were more likely to suffer severe spine and orthopedic injuries. Children in a front-seat (n = 236) vs those in a back-seat (n = 169) position had more injuries to the thoracic (27% vs 17%), abdominal (21% vs 13%), pelvic (11% vs 1%), and orthopedic (28% vs 10%) regions (P < .05 for all). Seat belts were protective for pelvic (5% vs 12% unbelted) and orthopedic (15% vs 40%) injuries (odds ratio = 3, P < .01 for both). A reproducible pattern of injury is noted for children involved in lateral-impact crashes characterized by head and chest injuries. The Injury Severity

  13. Djeen (Database for Joomla!'s Extensible Engine): a research information management system for flexible multi-technology project administration.

    Science.gov (United States)

    Stahl, Olivier; Duvergey, Hugo; Guille, Arnaud; Blondin, Fanny; Vecchio, Alexandre Del; Finetti, Pascal; Granjeaud, Samuel; Vigy, Oana; Bidaut, Ghislain

    2013-06-06

    With the advance of post-genomic technologies, the need for tools to manage large scale data in biology becomes more pressing. This involves annotating and storing data securely, as well as granting permissions flexibly with several technologies (all array types, flow cytometry, proteomics) for collaborative work and data sharing. This task is not easily achieved with most systems available today. We developed Djeen (Database for Joomla!'s Extensible Engine), a new Research Information Management System (RIMS) for collaborative projects. Djeen is a user-friendly application, designed to streamline data storage and annotation collaboratively. Its database model, kept simple, is compliant with most technologies and allows storing and managing of heterogeneous data with the same system. Advanced permissions are managed through different roles. Templates allow Minimum Information (MI) compliance. Djeen allows managing project associated with heterogeneous data types while enforcing annotation integrity and minimum information. Projects are managed within a hierarchy and user permissions are finely-grained for each project, user and group.Djeen Component source code (version 1.5.1) and installation documentation are available under CeCILL license from http://sourceforge.net/projects/djeen/files and supplementary material.

  14. Development of a Reference Database for Ion Beam Analysis. Report of a Coordinated Research Project on Reference Database for Ion Beam Analysis

    International Nuclear Information System (INIS)

    2015-12-01

    Ion beam analysis techniques are non-destructive analytical techniques used to identify the composition and provide elemental depth profiles in surface layers of materials. The applications of such techniques are diverse and include environmental control, cultural heritage and conservation and fusion technologies. Their reliability and accuracy depends strongly on our knowledge of the nuclear reaction cross sections, and this publication describes the coordinated effort to measure, compile and evaluate cross section data relevant to these techniques and make these data available to the user community through a comprehensive online database. It includes detailed assessments of experimental cross sections as well as attempts to benchmark these data against appropriate integral measurements

  15. Danish Hip Arthroscopy Registry (DHAR)

    DEFF Research Database (Denmark)

    Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

    2017-01-01

    The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) data from DHAR between January 2012 and November 2015 were extracted. Radiological pincer-type FAI was defined as LCE > 35° and cam FAI as alpha-angle > 55°. These data were combined with FAI surgical data such as osteochondroplasty and labral repair or resection. PROMs consisting of HAGOS, EQ-5 D...

  16. The Danish national quality database for births

    DEFF Research Database (Denmark)

    Andersson, Charlotte Brix; Flems, Christina; Kesmodel, Ulrik Schiøler

    2016-01-01

    Aim of the database: The aim of the Danish National Quality Database for Births (DNQDB) is to measure the quality of the care provided during birth through specific indicators. Study population: The database includes all hospital births in Denmark. Main variables: Anesthesia/pain relief, continuous...... Medical Birth Registry. Registration to the Danish Medical Birth Registry is mandatory for all maternity units in Denmark. During the 5 years, performance has improved in the areas covered by the process indicators and for some of the outcome indicators. Conclusion: Measuring quality of care during...

  17. [Some reflections on evidenced-based medicine, precision medicine, and big data-based research].

    Science.gov (United States)

    Tang, J L; Li, L M

    2018-01-10

    in epidemiology and a call to give up the assurance for validity in scientific research, which will inevitably lead to futile interventions. Furthermore, in proving the effectiveness of intervention, analyses of real-world big data cannot displace the role of randomized controlled trial. We expressed doubts and critiques in this article on precision medicine and big data, merely hoping to stimulate discussing on the true potentials of precision medicine and big data.

  18. Functional requirements regarding medical registries--preliminary results.

    Science.gov (United States)

    Oberbichler, Stefan; Hörbst, Alexander

    2013-01-01

    The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

  19. FALCAO - a relational database to storaging the variables monitored in the research reactor IEA-R1

    International Nuclear Information System (INIS)

    Gomes Neto, Jose; Andrade, Delvonei Alves de

    2007-01-01

    The objective of this work is to introduce all initial steps for the creation of a relational database, named FALCAO, to support the storaging of the monitored variables in the IEA-R1 research reactor, located in the Instituto de Pesquisas Energeticas e Nucleares, IPEN-CNEN/SP. As introduction, it is considered the modeling importance of the logic diagram and its direct influence in the integrity of the provided information. It is presented the concepts and steps of normalization and denormalization including the entities and relations involved in the logical model. It is also presented the effects of the model rules in the acquisition, loading and availability of the final information, under the performance concept, since the acquisition process, loads and provides lots of information in small intervals of time. The data logical model, considering the desired performance and the sharing information is also presented. (author)

  20. DISCONTOOLS: a database to identify research gaps on vaccines, pharmaceuticals and diagnostics for the control of infectious diseases of animals.

    Science.gov (United States)

    O'Brien, Declan; Scudamore, Jim; Charlier, Johannes; Delavergne, Morgane

    2017-01-03

    The public and private sector in the EU spend around €800 million per year on animal health and welfare related research. An objective process to identify critical gaps in knowledge and available control tools should aid the prioritisation of research in order to speed up the development of new or improved diagnostics, vaccines and pharmaceuticals and reduce the burden of animal diseases. Here, we describe the construction of a database based on expert consultation for 52 infectious diseases of animals. For each disease, an expert group produced a disease and product analysis document that formed the basis for gap analysis and prioritisation. The prioritisation model was based on a closed scoring system, employing identical weights for six evaluation criteria (disease knowledge; impact on animal health and welfare; impact on public health; impact on wider society; impact on trade; control tools). The diseases were classified into three groups: epizootic diseases, food-producing animal complexes or zoonotic diseases. The highly ranked diseases in the prioritisation model comprised mostly zoonotic and epizootic diseases with important gaps identified in vaccine development and pharmaceuticals, respectively. The most important outcome is the identification of key research needs by disease. The rankings and research needs by disease are provided on a public website ( www.discontools.eu ) which is currently being updated based on new expert consultations. As such, it can become a reference point for funders of research including the European Commission, member states, foundations, trusts along with private industry to prioritise research. This will deliver benefits in terms of animal health and welfare but also public health, societal benefits and a safe and secure food supply.

  1. The Danish ventral hernia database

    DEFF Research Database (Denmark)

    Helgstrand, Frederik; Jorgensen, Lars Nannestad

    2016-01-01

    Aim: The Danish Ventral Hernia Database (DVHD) provides national surveillance of current surgical practice and clinical postoperative outcomes. The intention is to reduce postoperative morbidity and hernia recurrence, evaluate new treatment strategies, and facilitate nationwide implementation of ...... of operations and is an excellent tool for observing changes over time, including adjustment of several confounders. This national database registry has impacted on clinical practice in Denmark and led to a high number of scientific publications in recent years.......Aim: The Danish Ventral Hernia Database (DVHD) provides national surveillance of current surgical practice and clinical postoperative outcomes. The intention is to reduce postoperative morbidity and hernia recurrence, evaluate new treatment strategies, and facilitate nationwide implementation...... to the surgical repair are recorded. Data registration is mandatory. Data may be merged with other Danish health registries and information from patient questionnaires or clinical examinations. Descriptive data: More than 37,000 operations have been registered. Data have demonstrated high agreement with patient...

  2. Meta-analysis of individual registry results enhances international registry collaboration.

    Science.gov (United States)

    Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

    2018-03-28

    Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

  3. Danish Childhood Cancer Registry

    DEFF Research Database (Denmark)

    Schrøder, Henrik; Rechnitzer, Catherine; Wehner, Peder Skov

    2016-01-01

    AIM OF DATABASE: The overall aim is to monitor the quality of childhood cancer care in Denmark; to register late effects of treatment; to analyze complications of permanent central venous catheters (CVCs); to study blood stream infections in children with cancer; and to study acute toxicity of high......-dose methotrexate infusions in children with leukemia. STUDY POPULATION: All children below 15 years of age at diagnosis living in Denmark diagnosed after January 1, 1985 according to the International Classification of Diseases 10, including diagnoses DC00-DD48. MAIN VARIABLES: Cancer type, extent of disease......, and outcome of antimicrobial chemotherapy. DESCRIPTIVE DATA: Since 1985, 4,944 children below 15 years of age have been registered in the database. There has been no significant change in the incidence of childhood cancer in Denmark since 1985. The 5-year survival has increased significantly since 1985...

  4. Usefulness of a centralized system of data collection for the development of an international multicentre registry of spondyloarthritis

    Science.gov (United States)

    Schiotis, Ruxandra; Font, Pilar; Zarco, Pedro; Almodovar, Raquel; Gratacós, Jordi; Mulero, Juan; Juanola, Xavier; Montilla, Carlos; Moreno, Estefanía; Ariza Ariza, Rafael; Collantes-Estevez, Eduardo

    2011-01-01

    Objective. To present the usefulness of a centralized system of data collection for the development of an international multicentre registry of SpA. Method. The originality of this registry consists in the creation of a virtual network of researchers in a computerized Internet database. From its conception, the registry was meant to be a dynamic acquiring system. Results. REGISPONSER has two developing phases (Conception and Universalization) and gathers several evolving secondary projects (REGISPONSER-EARLY, REGISPONSER-AS, ESPERANZA and RESPONDIA). Each sub-project answered the necessity of having more specific and complete data of the patients even from the onset of the disease so, in the end, obtaining a well-defined picture of SpAs spectrum in the Spanish population. Conclusion. REGISPONSER is the first dynamic SpA database composed of cohorts with a significant number of patients distributed by specific diagnosis, which provides basic specific information of the sub-cohorts useful for patients’ evaluation in rheumatology ambulatory consulting. PMID:20823095

  5. Pathway — Using a State-of-the-Art Digital Video Database for Research and Development in Teacher Education

    Science.gov (United States)

    Adrian, Brian; Zollman, Dean; Stevens, Scott

    2006-02-01

    To demonstrate how state-of-the-art video databases can address issues related to the lack of preparation of many physics teachers, we have created the prototype Physics Teaching Web Advisory (Pathway). Pathway's Synthetic Interviews and related video materials are beginning to provide pre-service and out-of-field in-service teachers with much-needed professional development and well-prepared teachers with new perspectives on teaching physics. The prototype was limited to a demonstration of the systems. N