WorldWideScience

Sample records for registry

  1. 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...

  2. 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...

  3. 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...

  4. 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

  5. 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,...

  6. 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.

  7. 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...

  8. [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.

  9. 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...

  10. 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...

  11. 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...

  12. 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...

  13. 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...

  14. 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.

  15. 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...

  16. 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...

  17. 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...

  18. 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.

  19. 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...

  20. 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...

  1. 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

    The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health

  2. 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...

  3. 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...

  4. 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...

  5. Review of patient registries in dermatology.

    Science.gov (United States)

    DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

    2016-10-01

    Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

  6. 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.

  7. 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......) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM). Peri-operative data and Patient Reported Outcome Measures (PROM......-5 D demonstrated improvement after 1 and 2 years from 0.66 pre-op to 0.78 at 2 years. HSAS improved significantly from 2.5 to 3.3. Pain score data demonstrated improvement in NRS-rest 39 to 17 and NRS Walk 49 to 22 at follow-up. We conclude that patients with FAI undergoing hip arthroscopy...

  8. Environmental Agents Service (EAS) Registry System of Records

    Data.gov (United States)

    Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

  9. CIRSE Vascular Closure Device Registry

    NARCIS (Netherlands)

    Reekers, Jim A.; Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2011-01-01

    Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. The CIRSE registry of closure devices

  10. The danish multiple sclerosis registry

    DEFF Research Database (Denmark)

    Brønnum-Hansen, Henrik; Koch-Henriksen, Nils; Stenager, Egon

    2011-01-01

    Introduction: The Danish Multiple Sclerosis (MS) Registry was established in 1956. Content: The register comprises data on all Danes who had MS in 1949 or who have been diagnosed since. Data on new cases and updated information on persons with an MS diagnosis already notified are continuously...

  11. Agency for Toxic Substances and Disease Registry

    Science.gov (United States)

    ... Z # Search Form Controls Search The CDC submit Agency for Toxic Substances and Disease Registry Note: Javascript ... gov . Recommend on Facebook Tweet Share Compartir The Agency for Toxic Substances and Disease Registry (ATSDR) , based ...

  12. Registries Help Moms Measure Medication Risks

    Science.gov (United States)

    ... in the case of the North American Antiepileptic Drug Pregnancy Registry, which studies the effects of drugs for ... is taking. For example, the North American Antiepileptic Drug Pregnancy Registry website lists more than 30 medications being ...

  13. Registries in European post-marketing surveillance

    DEFF Research Database (Denmark)

    Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim

    2017-01-01

    at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. METHODS: European Public Assessment Reports were consulted to identify products for which a request...

  14. 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...

  15. CIRSE Vascular Closure Device Registry

    International Nuclear Information System (INIS)

    Reekers, Jim A.; Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2011-01-01

    Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 5.9 cm, and two vessel occlusions. Conclusion: The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters.

  16. CIRSE Vascular Closure Device Registry

    Science.gov (United States)

    Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    2010-01-01

    Purpose Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only 5.9 cm, and two vessel occlusions. Conclusion The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters. PMID:20981425

  17. 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...

  18. The Danish National Prescription Registry

    DEFF Research Database (Denmark)

    Kildemoes, Helle Wallach; Toft Sørensen, Henrik; Hallas, Jesper

    2011-01-01

    Introduction: Individual-level data on all prescription drugs sold in Danish community pharmacies has since 1994 been recorded in the Register of Medicinal Products Statistics of the Danish Medicines Agency. Content: The register subset, termed the Danish National Prescription Registry (DNPR......), contains information on dispensed prescriptions, including variables at the level of the drug user, the prescriber, and the pharmacy. Validity and coverage: Reimbursement-driven record keeping, with automated bar-code-based data entry provides data of high quality, including detailed information...

  19. 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

  20. On Domain Registries and Website Content

    DEFF Research Database (Denmark)

    Schwemer, Sebastian Felix

    2018-01-01

    such as Internet access service providers, hosting platforms, and websites that link to content. This article shows that in recent years, however, that the (secondary) liability of domain registries and registrars, and more specifically country code top-level domain registries (ccTLDs) for website content, has...... been tested in several EU Member States. The article investigates tendencies in the national lower-court jurisprudence and explores to what extent the liability exemption regime of the E-Commerce Directive applies to domain registries. The analysis concludes that whereas domain registries fall under...

  1. 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...

  2. 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...

  3. Service registry design: an information service approach

    NARCIS (Netherlands)

    Ferreira Pires, Luis; Wang, J.; van Oostrum, Arjen; Wijnhoven, Alphonsus B.J.M.

    2010-01-01

    A service registry is a Service-Oriented Architecture (SOA) component that keeps a ‘catalogue’ of available services. It stores service specifications so that these specifications can be found by potential users. Discussions on the design of service registries currently focus on technical issues,

  4. Windows registry forensics advanced digital forensic analysis of the Windows registry

    CERN Document Server

    Carvey, Harlan

    2011-01-01

    Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

  5. 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.

  6. 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...

  7. EPA Facility Registry Service (FRS): RADINFO

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): NEI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  9. EPA Facility Registry Service (FRS): BIA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  10. EPA Facility Registry Service (FRS): BRAC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  11. EPA Facility Registry Service (FRS): NCDB

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  12. Substance Identification Information from EPA's Substance Registry

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal...

  13. Assessing Ontario's Personal Support Worker Registry

    Directory of Open Access Journals (Sweden)

    Audrey Laporte

    2013-08-01

    Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.

  14. Veterans Affairs Central Cancer Registry (VACCR)

    Data.gov (United States)

    Department of Veterans Affairs — The Veterans Affairs Central Cancer Registry (VACCR) receives and stores information on cancer diagnosis and treatment constraints compiled and sent in by the local...

  15. EPA Linked Open Data: Facility Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — The Facility Registry Service (FRS) identifies facilities, sites, or places subject to environmental regulation or of environmental interest to EPA programs or...

  16. Linking Medicare, Medicaid, and Cancer Registry Data...

    Data.gov (United States)

    U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

  17. EPA Facility Registry Service (FRS): TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  18. EPA Facility Registry Service (FRS): ICIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  19. EPA Facility Registry Service (FRS): OIL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil...

  20. EPA Facility Registry Service (FRS): RBLC

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): ACRES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of sites that link to...

  2. EPA Facility Registry System (FRS): NCES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  3. EPA Facility Registry Service (FRS): LANDFILL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of non-hazardous waste...

  4. EPA Linked Open Data: Substance Registry Service

    Data.gov (United States)

    U.S. Environmental Protection Agency — Substance Registry Services (SRS) is the Environmental Protection Agency's (EPA) central system for information about substances that are tracked or regulated by EPA...

  5. EPA Facility Registry Service (FRS): CAMDBS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  6. EPA Facility Registry System (FRS): NEPT

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): SDWIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): RCRA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  9. EPA Facility Registry Service (FRS): RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  10. Definition, epidemiology and registries of pulmonary hypertension.

    Science.gov (United States)

    Awdish, R; Cajigas, H

    2016-05-01

    Pulmonary arterial hypertension (PAH) is a subcategory of pulmonary hypertension (PH) that comprises a group of disorders with similar pulmonary vascular pathology. Though PH is common, the estimated incidence of IPAH is 1-3 cases per million, making it a rare disease. The hemodynamic definition of PAH is a mean pulmonary artery pressure at rest >OR = 25 mm Hg in the presence of a pulmonary capillary wedge pressure registries. These registries have been indispensable in the characterization and mapping of the natural history of the disease. Equations and risk calculators derived from registries have given clinicians a basis for risk stratification and prognostication. The sequential accumulation of data since the registries began in the 1980s allows for comparisons to be made. Patients who are differentiated by treatment eras and environments can be contrasted. Variability among inclusion criteria similarly allows for comparisons of these subpopulations. This article provides an overview of available registries, highlights insights provided by each and discusses key issues around the interpretation and extrapolation of data from PAH registries. Registries have allowed us to appreciate the improvement in survival afforded by modern therapy and enhanced detection of this disease. Moving forward, a more global approach to registries is needed, as is enhanced collaboration and centralization.

  11. Occupational Disease Registries-Characteristics and Experiences.

    Science.gov (United States)

    Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

    2017-06-01

    Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

  12. Workload and time management in central cancer registries: baseline data and implication for registry staffing.

    Science.gov (United States)

    Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

    2012-01-01

    The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

  13. 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.

  14. ISHKS joint registry: A preliminary report.

    Science.gov (United States)

    Pachore, Jawahir A; Vaidya, Shrinand V; Thakkar, Chandrasekhar J; Bhalodia, Haresh Kumar P; Wakankar, Hemant M

    2013-09-01

    Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are the most widely practiced surgical options for arthritis all over the world and its application is rising in India. Indian Society of Hip and Knee Surgeons (ISHKS) has established a joints registry and has been collecting data for last 6 years. All members of ISHKS are encouraged to actively participate in the registry. A simple two page knee and hip form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25%) and 25,866 females (75%). Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years). Average body mass index was 29.1 (Range: 18.1 to 42.9). The indication for TKA was osteoarthritis in 33,444 (97%) and rheumatoid arthritis in 759 (2.2%). Total of 3604 THA procedures were recorded. These included 2162 (60%) male patients and 1442 (40%) female patients. Average age was 52 years (Range 17 to 85 years) and average BMI was 25.8 (Range: 17.3 to 38.5). The indications for THA was AVN in 49%. The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

  15. Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

    Science.gov (United States)

    Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

    2017-01-01

    Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

  16. [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).

  17. 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.

  18. The National Mental Health Registry (NMHR).

    Science.gov (United States)

    Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

    2008-09-01

    The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

  19. ISHKS joint registry: A preliminary report

    Directory of Open Access Journals (Sweden)

    Jawahir A Pachore

    2013-01-01

    form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Results: Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25% and 25,866 females (75%. Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years. Average body mass index was 29.1 (Range: 18.1 to 42.9. The indication for TKA was osteoarthritis in 33,444 (97% and rheumatoid arthritis in 759 (2.2%. Total of 3604 THA procedures were recorded. These included 2162 (60% male patients and 1442 (40% female patients. Average age was 52 years (Range 17 to 85 years and average BMI was 25.8 (Range: 17.3 to 38.5. The indications for THA was AVN in 49%. Conclusion: The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

  20. 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...

  1. 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

  2. An international registry for primary ciliary dyskinesia

    DEFF Research Database (Denmark)

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian

    2016-01-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise...... an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201...... methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool...

  3. Common variables in European pancreatic cancer registries

    DEFF Research Database (Denmark)

    De Leede, E. M.; Sibinga Mulder, B. G.; Bastiaannet, E.

    2016-01-01

    Background Quality assurance of cancer care is of utmost importance to detect and avoid under and over treatment. Most cancer data are collected by different procedures in different countries, and are poorly comparable at an international level. EURECCA, acronym for European Registration of Cancer...... registries, as well as specific pancreatic cancer audits/registries, were invited to participate in EURECCA Pancreas. Participating countries were requested to share an overview of their collected data items. Of the received datasets, a shared items list was made which creates insight in similarities between...

  4. 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...

  5. 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.

  6. The Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

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

    2016-01-01

    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...

  7. 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

  8. Costing Tool for International Cancer Registries

    Centers for Disease Control (CDC) Podcasts

    2016-11-21

    A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries.  Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 11/21/2016.

  9. Airborne Hazards and Open Burn Pit Registry

    Science.gov (United States)

    ... this problem if you are in a high security environment where this is disabled by a network policy. The Registry will work in JavaScript-enabled browsers such as: Google Chrome 17+ Mozilla Firefox 12+ Internet Explorer 10+ Safari 5+ Safari iOS 5+ Android 2.3+ If you are using a compatible ...

  10. [History of the cancer registry in Mexico].

    Science.gov (United States)

    Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

    2011-01-01

    A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.

  11. An active registry for bioinformatics web services.

    NARCIS (Netherlands)

    Pettifer, S.; Thorne, D.; McDermott, P.; Attwood, T.; Baran, J.; Bryne, J.C.; Hupponen, T.; Mowbray, D.; Vriend, G.

    2009-01-01

    SUMMARY: The EMBRACE Registry is a web portal that collects and monitors web services according to test scripts provided by the their administrators. Users are able to search for, rank and annotate services, enabling them to select the most appropriate working service for inclusion in their

  12. 50 CFR 600.1410 - Registry process.

    Science.gov (United States)

    2010-10-01

    ... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at www... state registration or U.S. Coast Guard documentation number; home port or principal area of operation... website. (b) Individuals must submit their name; address; telephone number; date of birth; region(s) of...

  13. 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.

  14. The Savant Syndrome Registry: A Preliminary Report.

    Science.gov (United States)

    Treffert, Darold A; Rebedew, David L

    2015-08-01

    A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

  15. Mexican registry of pulmonary hypertension: REMEHIP.

    Science.gov (United States)

    Sandoval Zarate, Julio; Jerjes-Sanchez, Carlos; Ramirez-Rivera, Alicia; Zamudio, Tomas Pulido; Gutierrez-Fajardo, Pedro; Elizalde Gonzalez, Jose; Leon, Mario Seoane Garcia De; Gamez, Miguel Beltran; Abril, Francisco Moreno Hoyos; Michel, Rodolfo Parra; Aguilar, Humberto Garcia

    REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension. Will be included patients of age >2 years and diagnosis of pulmonary hypertension by right heart catheterization within Group 1 and Group 4 of the World Health Organization classification. The structure, data collection and data analysis will be based on quality current recommendations for registries. The protocol has been approved by institutional ethics committees in all participant centers. All patients will sign an informed consent form. Currently in Mexico, there is a need of observational registries that include patients with treatment in the everyday clinical practice so the data could be validated and additional information could be obtained versus the one from the clinical trials. In this way, REMEHIP emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2016 Instituto Nacional de Cardiología Ignacio Chávez. Publicado por Masson Doyma México S.A. 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. The Italian Registry of Antiphospholipid Antibodies.

    Science.gov (United States)

    Finazzi, G

    1997-01-01

    The clinical importance of antiphospholipid antibodies (APA) derives from their association with a syndrome of venous and arterial thrombosis, recurrent fetal loss and thrombocytopenia known as the antiphospholipid syndrome (APS). The Italian Registry of Antiphospholipid Antibodies was set up in 1989 for the purpose of collecting a large number of patients with lupus anticoagulant (LA) or anticardiolipin antibodies (ACA) for clinical studies in order to obtain more information on the clinical features of APS. The Italian Registry has completed two clinical studies and proposed an international trial on the treatment of APS patients. These activities of the Registry are reviewed herein. Additional information has been obtained from pertinent articles and abstracts published in journals covered by the Science Citation Index and Medline. The first study of the Registry was a retrospective analysis of enrolled patients which showed that: a) the prevalence of thrombosis and thrombocytopenia was similar in cases with idiopathic APA or APA secondary to systemic lupus erythematosus, and b) the rate of thrombosis was significantly reduced in patients with severe thrombocytopenia but not in those with only a mild reduction of the platelet count. The second study was a prospective survey of the natural history of the disease, showing that a) previous thrombosis and ACA titer > 40 units were independent predictors of subsequent vascular complications; b) a history of miscarriage or thrombosis is significantly associated with adverse pregnancy outcome; c) hematological malignancies can develop during follow-up and patients with APA should be considered at increased risk of developing NHL. Thus the possibility of a hematologic neoplastic disease should be borne in mind in the initial evaluation and during the follow-up of these patients. The latest initiative of the Registry was the proposal of an international, randomized clinical trial (WAPS study) aimed at assessing the

  18. 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.

  19. 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.

  20. 14 CFR 47.19 - FAA Aircraft Registry.

    Science.gov (United States)

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19... REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other communication sent to the FAA under this Part must be mailed to the FAA Aircraft Registry, Department of...

  1. 14 CFR 49.11 - FAA Aircraft Registry.

    Science.gov (United States)

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11... AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for recording, a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post Office...

  2. A review of national shoulder and elbow joint replacement registries

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Olsen, Bo S; Fevang, Bjørg-Tilde S

    2012-01-01

    The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible....

  3. 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 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ...

  4. 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.

  5. 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

  6. The national dose registry of Canada

    International Nuclear Information System (INIS)

    1982-04-01

    In 1951, when the National Dosimetry Service was established by the Department of National Health and Welfare, a system of centralized records was created as an integral part of the new service. Over the last few years the dose record system has expanded in size and content, and improvements have been made in the physical methods of record storage. In addition to the 250 000 individual dose records from the National Dosimetry Service, the National Dose Registry now includes internal tritium and external doses from nuclear generating stations, and radon daughter exposures submitted by uranium mining companies. With the increase in the use of radiation in the medical, industrial and research fields, it is becoming more important to have a comprehensive and readily accessible centralized record system. The Canadian National Dose Registry is particularly suited for continuing health risk studies of radiation workers and provides a base for future epidemiological studies

  7. 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.

  8. 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.

  9. International Consortium of Vascular Registries Consensus Recommendations for Peripheral Revascularisation Registry Data Collection

    DEFF Research Database (Denmark)

    Behrendt, Christian-Alexander; Bertges, Daniel; Eldrup, Nikolaj

    2018-01-01

    intervention; (ix) complications; and (x) follow up. CONCLUSION: A modified Delphi study allowed 25 international vascular registry experts to achieve a consensus recommendation for a minimum core data set and an optimum data set for peripheral arterial revascularisation registries. Continued global...... via internet exchange and face to face discussions. In total, 187 different items from the various registry data forms were identified for potential inclusion in the recommended data set. Ultimately, 79 items were recommended for inclusion in minimum core data sets, including 65 items in the level 1...... data set, and an additional 14 items in the more specific level 2 and 3 recommended data sets. Data elements were broadly divided into (i) patient characteristics; (ii) comorbidities; (iii) current medications; (iv) lesion treated; (v) procedure; (vi) bypass; (vii) endarterectomy (viii) catheter based...

  10. 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.

  11. A Registry Framework Enabling Patient-Centred Care.

    Science.gov (United States)

    Bellgard, Matthew I; Napier, Kathryn; Render, Lee; Radochonski, Maciej; Lamont, Leanne; Graham, Caroline; Wilton, Steve D; Fletcher, Sue; Goldblatt, Jack; Hunter, Adam A; Weeramanthri, Tarun

    2015-01-01

    Clinical decisions rely on expert knowledge that draws on quality patient phenotypic and physiological data. In this regard, systems that can support patient-centric care are essential. Patient registries are a key component of patient-centre care and can come in many forms such as disease-specific, recruitment, clinical, contact, post market and surveillance. There are, however, a number of significant challenges to overcome in order to maximise the utility of these information management systems to facilitate improved patient-centred care. Registries need to be harmonised regionally, nationally and internationally. However, the majority are implemented as standalone systems without consideration for data standards or system interoperability. Hence the task of harmonisation can become daunting. Fortunately, there are strategies to address this. In this paper, a disease registry framework is outlined that enables efficient deployment of national and international registries that can be modified dynamically as registry requirements evolve. This framework provides a basis for the development and implementation of data standards and enables patients to seamlessly belong to multiple registries. Other significant advances include the ability for registry curators to create and manage registries themselves without the need to contract software developers, and the concept of a registry description language for ease of registry template sharing.

  12. 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.

  13. A Dutch Nationwide Bariatric Quality Registry: DATO.

    Science.gov (United States)

    Poelemeijer, Youri Q M; Liem, Ronald S L; Nienhuijs, Simon W

    2017-12-22

    In the Netherlands, the number of bariatric procedures increased exponentially in the 90s. To ensure and improve the quality of bariatric surgery, the nationwide Dutch Audit for Treatment of Obesity (DATO) was established in 2014. The audit was coordinated by the Dutch Institute for Clinical Auditing (DICA). This article provides a review of the aforementioned process in establishing a nationwide registry in the Netherlands. In collaboration with the DATO's scientific committee and other stakeholders, an annual list of several external quality indicators was formulated. This list consists of volume, process, and outcome indicators. In addition to the annual external indicators, the database permits individual hospitals to analyze their own data. The dashboard provides several standardized reports and detailed quality indicators, which are updated on a weekly base. Since the start, all 18 Dutch bariatric centers participated in the nationwide audit. A total of 21,941 cases were registered between 2015 and 2016. By 2016, the required variables were registered in 94.3% of all cases. A severe complicated course was seen in 2.87%, and mortality in 0.05% in 2016. The first-year follow-up shows a > 20% TWL in 86.1% of the registered cases. The DATO has become rapidly a mature registry. The well-organized structure of the national audit institution DICA and governmental funding were essential. However, most important were the bariatric teams themselves. The authors believe reporting the results from the registry has already contributed to more knowledge and acceptance by other health care providers.

  14. National registry of hemoglobinopathies in Spain (REPHem).

    Science.gov (United States)

    Cela, Elena; Bellón, José M; de la Cruz, María; Beléndez, Cristina; Berrueco, Rubén; Ruiz, Anna; Elorza, Izaskun; Díaz de Heredia, Cristina; Cervera, Aurea; Vallés, Griselda; Salinas, J Antonio; Coll, M Teresa; Bermúdez, Mar; Prudencio, Marta; Argilés, Bienvenida; Vecilla, Cruz

    2017-07-01

    Although highly prevalent throughout the world, the accurate prevalence of hemoglobinopathies in Spain is unknown. This study presents data on the national registry of hemoglobinopathies of patients with thalassemia major (TM), thalassemia intermedia (TI), and sickle cell disease (SCD) in Spain created in 2014. Fifty centers reported cases retrospectively. Data were registered from neonatal screening or from the first contact at diagnosis until last follow-up or death. Data of the 715 eligible patients were collected: 615 SCD (497 SS, 64 SC, 54 SBeta phenotypes), 73 thalassemia, 9 CC phenotype, and 18 other variants. Most of the SCD patients were born in Spain (65%), and 51% of these were diagnosed at newborn screening. Median age at the first diagnosis was 0.4 years for thalassemia and 1.0 years for SCD. The estimated incidence was 0.002 thalassemia cases and 0.03 SCD cases/1,000 live births. Median age was 8.9 years (0.2-33.7) for thalassemia and 8.1 years (0.2-32.8) for SCD patients. Stroke was registered in 16 SCD cases. Transplantation was performed in 43 TM and 23 SCD patients at a median age of 5.2 and 7.8 years, respectively. Twenty-one patients died (3 TM, 17 SCD, 1 CC) and 200 were lost to follow-up. Causes of death were related to transplantation in three patients with TM and three patients with SCD. Death did not seem to be associated with SCD in six patients, but nine patients died secondary to disease complications. Overall survival was 95% at 15 years of age. The registry provides data about the prevalence of hemoglobinopathies in Spain and will permit future cohort studies and the possibility of comparison with other registries. © 2016 Wiley Periodicals, Inc.

  15. Danish Registry of Childhood and Adolescent Diabetes

    Directory of Open Access Journals (Sweden)

    Svensson J

    2016-10-01

    Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps

  16. 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...

  17. Evidence and practice in spine registries A systematic review, and recommendations for future design of registries

    NARCIS (Netherlands)

    van Hooff, M.L.; Jacobs, W.C.H.; Willems, P.C.; Wouters, M.W.J.M.; de Kleuver, M.; Peul, W.C.; Ostelo, R.W.J.G.; Fritzell, P.

    2015-01-01

    Background and purpose-We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the "quality

  18. The Danish Multiple Sclerosis Registry. History, data collection and validity

    DEFF Research Database (Denmark)

    Koch-Henriksen, N; Rasmussen, S; Stenager, E

    2001-01-01

    The Danish Multiple Sclerosis Registry was formally established in 1956 but started operating in 1949 with a nationwide prevalence survey. Since then, the Registry has continued collecting data on new and old cases of multiple sclerosis (MS) or suspected MS from multiple sources. The Registry...... instrument for monitoring incidence and prevalence, analysing survival, performing genetic analysis, providing unselected patient samples for clinical analyses, performing case-control studies and prospective studies and estimating the need for treatment and care....

  19. Evaluating the completeness of the national ALS registry, United States.

    Science.gov (United States)

    Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul

    2018-02-01

    Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.

  20. The Three Mile Island Population Registry.

    Science.gov (United States)

    Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

    1983-01-01

    Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health.

  1. Thyroid Cancer and Tumor Collaborative Registry (TCCR).

    Science.gov (United States)

    Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.

  2. 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.

  3. The Mid-Atlantic Twin Registry, revisited.

    Science.gov (United States)

    Lilley, Emily C H; Silberg, Judy L

    2013-02-01

    The Mid-Atlantic Twin Registry (MATR) is a population-based registry of more than 56,000 twins primarily born or living in Virginia, North Carolina, and South Carolina. The MATR employs several methods of ascertaining twins, and devotes considerable resources to tracking and maintaining communication with MATR participants. Researchers may utilize the MATR for administration of research services including study recruitment, collection of DNA, archival data set creation, as well as data collection through mailed, phone, or online surveys. In addition, the MATR houses the MATR Repository, with over 1,200 blood samples available for researchers interested in DNA genotyping. For over 35 years MATR twins have participated in research studies with investigators from diverse scientific disciplines and various institutions. These studies, which have resulted in numerous publications, have covered a range of topics, including the human microbiome, developmental psychopathology, depression, anxiety, substance use, epigenetics of aging, children of twins, pre-term birth, social attitudes, seizures, eating disorders, as well as sleep homeostasis. Researchers interested in utilizing twins are encouraged to contact the MATR to discuss potential research opportunities.

  4. The national registry for radiation workers

    International Nuclear Information System (INIS)

    Kendall, G.M.; Dennis, J.A.

    1985-01-01

    The National Registry for Radiation Workers (NRRW) was set up by the National Radiological Protection Board in 1976. The analysis of registry data has four aims: a) To determine whether there is any evidence of differences in the causes of and ages at death of workers exposed to different levels of radiation and, if any differences are found, whether it seems likely that they can be attributed to radiation. b) To estimate the magnitude of the risk, if any differences are found, that seem likely to be attributable to radiation. c) To estimate bounds to the possible risk for particular types of malignancy, such as leukemia. d) To compare the mortality experience of radiation workers with national mortality data and also with that of other industrial groups for whom data exist. If current estimates of the risks of ionizing radiation are correct, very few deaths will be induced in the study population and it will be impossible to detect them statistically. The NRRW currently includes records for over 60,000 individuals. 6 refs

  5. Patient reported outcomes in hip arthroplasty registries.

    Science.gov (United States)

    Paulsen, Aksel

    2014-05-01

    PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test

  6. The GEOSS Component and Service Registry

    Science.gov (United States)

    Di, L.; Bai, Y.; Shen, D.; Shao, Y.; Shrestha, R.; Wang, H.; Nebert, D. D.

    2011-12-01

    Petabytes of Earth science data have been accumulated through space- and air-borne Earth observation programs during the last several decades. The data are valuable both scientifically and socioeconomically. The value of these data could be further increased significantly if the data from these programs can be easily discovered, accessed, integrated, and analyzed. The Global Earth Observation System of Systems (GEOSS) is addressing this need. Coordinated by the Group on Earth Observations (or GEO), a voluntary partnership of 86 governments, the European Commission, and 61 intergovernmental, international, and regional organizations has been working on implementing GEOSS for a number of years. After four years of international collaboration, the GEOSS Common Infrastructure (GCI) has been established. GCI consists of the Standards and Interoperability Registry (SIR), the Component and Service Registry (CSR), the GEO clearinghouse, and the GEO Portal. The SIR maintains the list of the public standards recognized by the GEO. CSR provides a centralized registry for available Earth Observation resources. The GEO clearinghouse works as a single search facility for GEOSS-wide resources and the GEO Portal provides an integrated Web-based interfaces for users. Since January 2007, researchers at CSISS, GMU have collaborated with officials from the Federal Geographic Data Committee (FGDC) on designing, implementing, maintaining, and upgrading CSR. Currently CSR provides the following capabilities for data providers: user registration, resource registration, and service interface registration. The CSR clients can discover the resources registered in CSR through OGC Catalog for Web (CSW), UUDI, and other standard interfaces. During the resource registration process, providers may define detailed descriptive information for their resources, in particular, the targeted societal benefit area and sub-areas of focus, and the targeted critical Earth Observations. The service

  7. Quality of trauma care and trauma registries.

    Science.gov (United States)

    Pino Sánchez, F I; Ballesteros Sanz, M A; Cordero Lorenzana, L; Guerrero López, F

    2015-03-01

    Traumatic disease is a major public health concern. Monitoring the quality of services provided is essential for the maintenance and improvement thereof. Assessing and monitoring the quality of care in trauma patient through quality indicators would allow identifying opportunities for improvement whose implementation would improve outcomes in hospital mortality, functional outcomes and quality of life of survivors. Many quality indicators have been used in this condition, although very few ones have a solid level of scientific evidence to recommend their routine use. The information contained in the trauma registries, spread around the world in recent decades, is essential to know the current health care reality, identify opportunities for improvement and contribute to the clinical and epidemiological research. Copyright © 2014 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.

  8. 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...

  9. The Danish Registry of Diabetic Retinopathy

    DEFF Research Database (Denmark)

    Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina

    2016-01-01

    . Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments...... and in private ophthalmological practice. In 2014-2015, DiaBase included data collected from 77,968 diabetes patients. Main variables: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data...... with respect to age, sex, best corrected visual acuity, screening frequency, grading of diabetic retinopathy and maculopathy at each visit, progression/regression of diabetic eye disease, and prevalence of blindness were obtained. Data analysis from DiaBase’s latest annual report (2014-2015) indicates...

  10. Danish Registry of Childhood and Adolescent Diabetes

    DEFF Research Database (Denmark)

    Svensson, Jannet; Cerqueira, Charlotte; Kjærsgaard, Per

    2016-01-01

    children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (years of age) will be included. MAIN VARIABLES: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes......, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. DESCRIPTIVE DATA: The number of children diagnosed with diabetes is increasing with ∼3% per year mainly for type 1 diabetes (ie, 296 new patients years of age were diagnosed in 2014). The disease management has...... classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy...

  11. The Danish Registry of Diabetic Retinopathy

    DEFF Research Database (Denmark)

    Andersen, Nis; Hjortdal, Jesper Østergaard; Schielke, Katja Christina

    2016-01-01

    . Denmark (5.5 million inhabitants) has ~320,000 diabetes patients with an annual increase of 27,000 newly diagnosed patients. The Danish Registry of Diabetic Retinopathy (DiaBase) collects data on all diabetes patients aged ≥18 years who attend screening for diabetic eye disease in hospital eye departments...... and in private ophthalmological practice. In 2014-2015, DiaBase included data collected from 77,968 diabetes patients. MAIN VARIABLES: The main variables provide data for calculation of performance indicators to monitor the quality of diabetic eye screening and development of diabetic retinopathy. Data...... with respect to age, sex, best corrected visual acuity, screening frequency, grading of diabetic retinopathy and maculopathy at each visit, progression/regression of diabetic eye disease, and prevalence of blindness were obtained. Data analysis from DiaBase's latest annual report (2014-2015) indicates...

  12. The Corrona US registry of rheumatic and autoimmune diseases.

    Science.gov (United States)

    Kremer, Joel M

    2016-01-01

    The Corrona US national registry collects data concerning patient status from both the rheumatologist and patient at routine clinical encounters. Corrona has functioning disease registries in rheumatoid arthritis, psoriatic arthritis, spondyloarthropathies, psoriasis and inflammatory bowel disease. Corrona merges data concerning long-term effectiveness and safety, as well as comparative and cost effectiveness of agents to treat these autoimmune diseases.

  13. Data quality in the Danish National Acute Leukemia Registry

    DEFF Research Database (Denmark)

    Ostgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Severinsen, Marianne Tang

    2013-01-01

    The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data.......The Danish National Acute Leukemia Registry (DNLR) has documented coverage of above 98.5%. Less is known about the quality of the recorded data....

  14. Paper 6: EUROCAT member registries: organization and activities

    DEFF Research Database (Denmark)

    Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude

    2011-01-01

    EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital a...

  15. Cancer incidence in Morocco: report from Casablanca registry 2005 ...

    African Journals Online (AJOL)

    Introduction: Few population-based cancer registries are in place in developing countries. In order to know the burden of cancer in Moroccan population, cancer registry initiative was put in place in the Casablanca district, the biggest city of Morocco. Methods: The data collected covers 3.6 millions inhabitant and included ...

  16. 42 CFR 483.156 - Registry of nurse aides.

    Science.gov (United States)

    2010-10-01

    ... the registry because they have performed no nursing or nursing-related services for a period of 24... individual was found not guilty in a court of law, or the State is notified of the individual's death. (2) The registry must remove entries for individuals who have performed no nursing or nursing-related...

  17. 37 CFR 201.25 - Visual Arts Registry.

    Science.gov (United States)

    2010-07-01

    ... the copyright law. Visual Arts Registry Statements which are illegible or fall outside of the scope of... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25 Section 201.25 Patents, Trademarks, and Copyrights COPYRIGHT OFFICE, LIBRARY OF CONGRESS COPYRIGHT OFFICE...

  18. Development of the SIOPE DIPG network, registry and imaging repository

    DEFF Research Database (Denmark)

    Veldhuijzen van Zanten, Sophie E M; Baugh, Joshua; Chaney, Brooklyn

    2017-01-01

    was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence...

  19. I RBH - First Brazilian Hypertension Registry.

    Science.gov (United States)

    Jardim, Paulo César Brandão Veiga; Souza, Weimar Kunz Sebba Barroso de; Lopes, Renato Delascio; Brandão, Andréa Araújo; Malachias, Marcus V Bolívar; Gomes, Marco Mota; Moreno Júnior, Heitor; Barbosa, Eduardo Costa Duarte; Póvoa, Rui Manoel Dos Santos

    2016-08-01

    A registry assessing the care of hypertensive patients in daily clinical practice in public and private centers in various Brazilian regions has not been conducted to date. Such analysis is important to elucidate the effectiveness of this care. To document the current clinical practice for the treatment of hypertension with identification of the profile of requested tests, type of administered treatment, level of blood pressure (BP) control, and adherence to treatment. National, observational, prospective, and multicenter study that will include patients older than 18 years with hypertension for at least 4 weeks, following up in public and private centers and after signing a consent form. The study will exclude patients undergoing dialysis, hospitalized in the previous 30 days, with class III or IV heart failure, pregnant or nursing, with severe liver disease, stroke or acute myocardial infarction in the past 30 days, or with diseases with a survival prognosis crisis, cardiocirculatory events, and cardiovascular death, while secondary outcomes will be hospitalization for heart failure and requirement of dialysis. A subgroup analysis of 15% of the sample will include noninvasive central pressure evaluation at baseline and study end. The estimated sample size is 3,000 individuals for a prevalence of 5%, sample error of 2%, and 95% confidence interval. The results will be presented after the final evaluation, which will occur at the end of a 1-year follow-up. The analysis of this registry will improve the knowledge and optimize the treatment of hypertension in Brazil, as a way of modifying the prognosis of cardiovascular disease in the country.

  20. Advantages and limitations of national arthroplasty registries. The need for multicenter registries: the Rempro-SBQ

    Directory of Open Access Journals (Sweden)

    Luiz Sérgio Marcelino Gomes

    Full Text Available Abstract While the value of national arthroplasty registries (NAR for quality improvement in total hip arthroplasty (THA has already been widely reported, some methodological limitations associated with observational epidemiological studies that may interfere with the assessment of safety and efficacy of prosthetic implants have recently been described in the literature. Among the main limitations of NAR, the need for at least 80% compliance of all health institutions covered by the registry is emphasized; completeness equal or greater than 90% of all THA performed; restricted data collection; use of revision surgery as the sole criterion for outcome; and the inability of establishing a definite causal link with prosthetic dysfunction. The present article evaluates the advantages and limitations of NAR, in the light of current knowledge, which point to the need for a broader data collection and the use of more structured criteria for defining outcomes. In this scenario, the authors describe of idealization, conceptual and operational structure, and the project of implantation and implementation of a multicenter registry model, called Rempro-SBQ, which includes healthcare institutions already linked to the Brazilian Hip Society (Sociedade Brasileira de Quadril [SBQ]. This partnership enables the collection of more reliable and comprehensive data at a higher hierarchical level, with a significant reduction in maintenance and financing costs. The quality improvement actions supported by SBQ may enhance its effectiveness and stimulate greater adherence for collecting, storing, interpreting, and disseminating information (feedback.

  1. Advantages and limitations of national arthroplasty registries. The need for multicenter registries: the Rempro-SBQ.

    Science.gov (United States)

    Gomes, Luiz Sérgio Marcelino; Roos, Milton Valdomiro; Takata, Edmilson Takehiro; Schuroff, Ademir Antônio; Alves, Sérgio Delmonte; Camisa Júnior, Antero; Miranda, Ricardo Horta

    2017-01-01

    While the value of national arthroplasty registries (NAR) for quality improvement in total hip arthroplasty (THA) has already been widely reported, some methodological limitations associated with observational epidemiological studies that may interfere with the assessment of safety and efficacy of prosthetic implants have recently been described in the literature. Among the main limitations of NAR, the need for at least 80% compliance of all health institutions covered by the registry is emphasized; completeness equal or greater than 90% of all THA performed; restricted data collection; use of revision surgery as the sole criterion for outcome; and the inability of establishing a definite causal link with prosthetic dysfunction. The present article evaluates the advantages and limitations of NAR, in the light of current knowledge, which point to the need for a broader data collection and the use of more structured criteria for defining outcomes. In this scenario, the authors describe of idealization, conceptual and operational structure, and the project of implantation and implementation of a multicenter registry model, called Rempro-SBQ, which includes healthcare institutions already linked to the Brazilian Hip Society (Sociedade Brasileira de Quadril [SBQ]). This partnership enables the collection of more reliable and comprehensive data at a higher hierarchical level, with a significant reduction in maintenance and financing costs. The quality improvement actions supported by SBQ may enhance its effectiveness and stimulate greater adherence for collecting, storing, interpreting, and disseminating information (feedback).

  2. Rationale and design of a large registry on renal denervation: the Global SYMPLICITY registry.

    Science.gov (United States)

    Böhm, Michael; Mahfoud, Felix; Ukena, Christian; Bauer, Axel; Fleck, Eckart; Hoppe, Uta C; Kintscher, Ulrich; Narkiewicz, Krzysztof; Negoita, Manuela; Ruilope, Luis; Rump, L Christian; Schlaich, Markus; Schmieder, Roland; Sievert, Horst; Weil, Joachim; Williams, Bryan; Zeymer, Uwe; Mancia, Giuseppe

    2013-08-22

    Hypertension is a global healthcare concern associated with a wide range of comorbidities. The recognition that elevated sympathetic drive plays an important role in the pathogenesis of hypertension led to the use of renal artery denervation to interrupt the efferent and afferent sympathetic nerves between the brain and kidneys to lower blood pressure. Clinical trials of the Symplicity™ renal denervation system have demonstrated that radiofrequency ablation of renal artery nerves is safe and significantly lowers blood pressure in patients with severe resistant (systolic BP >160 mmHg) hypertension. Smaller ancillary studies in hypertensive patients suggest a benefit from renal denervation in a variety of conditions such as chronic kidney disease, glucose intolerance, sleep apnoea and heart failure. The Global SYMPLICITY registry, which incorporates the GREAT SYMPLICITY registry initiated in Germany, is being conducted worldwide to evaluate the safety and efficacy of treatment with the Symplicity renal denervation system in real-world uncontrolled hypertensive patients, looking first at subjects with severe resistant hypertension to confirm the results of prior clinical trials, but then also subjects with a wider range of baseline blood pressure and coexisting comorbidities. The rationale, design and first baseline data from the Global SYMPLICITY registry are presented.

  3. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    Hollak, Carla E. M.; Aerts, Johannes M. F. G.; Aymé, Ségolène; Manuel, Jeremy

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and

  4. 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

  5. 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

  6. 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

  7. Marrow donor registry and cord blood bank in Taiwan.

    Science.gov (United States)

    Lee, Tsung Dao

    2002-08-01

    Unrelated Bone marrow transplant was initiated thirty years ago. Though there are over millions of donors registered with the bone marrow registries worldwide, Asian patients rarely find a match with all these donors. Tzu Chi Marrow Donor Registry was established to meet this need. It has become the largest Asian marrow donor registry in the world. With the introduction of high technology to test the HLA of the donors and recipients, the success rate of bone marrow transplant is greatly improved among Asian countries. 50% of blood disease Asian patients who cannot find a bone marrow matched donor will be complemented by the establishment of cord blood banks in Taiwan.

  8. EPA Facility Registry System (FRS): NCES

    Science.gov (United States)

    This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to the National Center for Education Statistics (NCES). The primary federal database for collecting and analyzing data related to education in the United States and other Nations, NCES is located in the U.S. Department of Education, within the Institute of Education Sciences. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA00e2??s national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to NCES school facilities once the NCES data has been integrated into the FRS database. Additional information on FRS is available at the EPA website http://www.epa.gov/enviro/html/fii/index.html.

  9. Italian registry of cardiac magnetic resonance

    Energy Technology Data Exchange (ETDEWEB)

    Francone, Marco [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Di Cesare, Ernesto, E-mail: ernesto.dicesare@cc.univaq.it [Dipartimento di Scienze Cliniche Applicate e Biotecnologie, Università di L’Aquila (Italy); Cademartiri, Filippo [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pontone, Gianluca [IRCCS Centro Cardiologico Monzino (Italy); Lovato, Luigi [Policlinico S. Orsola Bologna (Italy); Matta, Gildo [Azienda ospedaliera G Brotzu Cagliari (Italy); Secchi, Francesco [IRCCS Policlinico San Donato, Radiology Unit, Milan (Italy); Maffei, Erica [Cardio-Vascular Imaging Unit, Giovanni XXIII Hospital, Monastier di Treviso, TV (Italy); Erasmus Medical Center University, Rotterdam (Netherlands); Pradella, Silvia [Azienda Ospedaliera Universitaria Careggi (Italy); Carbone, Iacopo [Department of Radiological, Oncological and Pathological Sciences, Sapienza University of Rome (Italy); Marano, Riccardo [Policlinico Gemelli, Università Cattolica Roma (Italy); Bacigalupo, Lorenzo [Ospedale Galliera, Genova (Italy); Chiodi, Elisabetta [Ospedale S. Anna Ferrara (Italy); Donato, Rocco [Azienda Ospedaliera Universitaria G. Martino, Me (Italy); Sbarbati, Stefano [Ospedale Madre Giuseppina Vannini, Roma (Italy); De Cobelli, Francesco [IRCCS S. Raffaele, Università Vita Salute, Milano (Italy); Di Renzi, Paolo [Fate Bene Fratelli Isola tiberina, Roma (Italy); Ligabue, Guido; Mancini, Andrea [Azienda Ospedaliera-Universitaria Policlinico di Modena (Italy); Palmieri, Francesco [Diparimento di Diagnostica per immagini e radiologia interventistica, Ospedale S. Maria delle Grazie, Pozzuoli, Napoli (Italy); and others

    2014-01-15

    Objectives: Forty sites were involved in this multicenter and multivendor registry, which sought to evaluate indications, spectrum of protocols, impact on clinical decision making and safety profile of cardiac magnetic resonance (CMR). Materials and methods: Data were prospectively collected on a 6-month period and included 3376 patients (47.2 ± 19 years; range 1–92 years). Recruited centers were asked to complete a preliminary general report followed by a single form/patient. Referral physicians were not required to exhibit any specific certificate of competency in CMR imaging. Results: Exams were performed with 1.5 T scanners in 96% of cases followed by 3 T (3%) and 1 T (1%) magnets and contrast was administered in 84% of cases. The majority of cases were performed for the workup of inflammatory heart disease/cardiomyopathies representing overall 55.7% of exams followed by the assessment of myocardial viability and acute infarction (respectively 6.9% and 5.9% of patients). In 49% of cases the final diagnosis provided was considered relevant and with impact on patient's clinical/therapeutic management. Safety evaluation revealed 30 (0.88%) clinical events, most of which due to patient's preexisting conditions. Radiological reporting was recorded in 73% of exams. Conclusions: CMR is performed in a large number of centers in Italy with relevant impact on clinical decision making and high safety profile.

  10. 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.

  11. 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.

  12. The Mataró Stroke Registry: a 10-year registry in a community hospital.

    Science.gov (United States)

    Palomeras Soler, E; Fossas Felip, P; Casado Ruiz, V; Cano Orgaz, A; Sanz Cartagena, P; Muriana Batiste, D

    2015-06-01

    A prospective stroke registry leads to improved knowledge of the disease. We present data on the Mataró Hospital Registry. In February-2002 a prospective stroke registry was initiated in our hospital. It includes sociodemographic data, previous diseases, clinical, topographic, etiological and prognostic data. We have analyzed the results of the first 10 years. A total of 2,165 patients have been included, 54.1% male, mean age 73 years. The most frequent vascular risk factor was hypertension (65.4%). Median NIHSS on admission: 3 (interquartile range, 1-8). Stroke subtype: 79.7% ischemic strokes, 10.9% hemorrhagic, and 9.4% TIA. Among ischemic strokes, the etiology was cardioembolic in 26.5%, large-vessel disease in 23.7%, and small-vessel in 22.9%. The most frequent topography of hemorrhages was lobar (47.4%), and 54.8% were attributed to hypertension. The median hospital stay was 8 days. At discharge, 60.7% of patients were able to return directly to their own home, and 52.7% were independent for their daily life activities. After 3 months these percentages were 76.9% and 62.9%, respectively. Hospital mortality was 6.5%, and after 3 months 10.9%. Our patient's profile is similar to those of other series, although the severity of strokes was slightly lower. Length of hospital stay, short-term and medium term disability, and mortality rates are good, if we compare them with other series. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

  13. EPA Facility Registry Service (FRS): RCRA_INACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste...

  14. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  15. 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...

  16. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  17. EPA Facility Registry Service (FRS): ALL FRS INTERESTS LAYER

    Data.gov (United States)

    U.S. Environmental Protection Agency — This data provides location and attribute information on all facilities in EPA's Facility Registry Service (FRS) for a internet web feature service . The FRS is an...

  18. EPA Facility Registry Service (FRS): ER_FRP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This dataset contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to Facility...

  19. EPA Facility Registry Service (FRS): AIRS_AQS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  20. Recent progress of the United States transuranium and uranium registries

    International Nuclear Information System (INIS)

    Kathren, R.L.

    1986-01-01

    This paper provides a brief overview of the history and objectives of the US Transuranium and Uranium Registries along with a discussion of some recent activities and accomplishments of these two parallel programs. 17 refs

  1. EPA Facility Registry Service (FRS): ER_EPLAN

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  2. EPA Facility Registry Service (FRS): Facility Interests Dataset

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  3. EPA Facility Registry Service (FRS): Facility Interests Dataset Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are...

  4. 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).

  5. EPA Facility Registry Service (FRS): RCRA_ACTIVE

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of active hazardous...

  6. EPA Facility Registry Service (FRS): RCRA_LQG

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  7. EPA Facility Registry Service (FRS): AIRS_AFS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  8. EPA Facility Registry Service (FRS): RCRA_TRANS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  9. EPA Facility Registry Service (FRS): ER_TRI

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  10. EPA Facility Registry Service (FRS): ER_TSCA

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  11. EPA Facility Registry Service (FRS): Wastewater Treatment Plants

    Data.gov (United States)

    U.S. Environmental Protection Agency — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS), EPA's Integrated Compliance Information System (ICIS)...

  12. EPA Facility Registry Service (FRS): ER_WWTP_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of Waste Water Treatment...

  13. EPA Facility Registry Service (FRS): ER_CERCLIS

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  14. EPA Facility Registry Service (FRS): RCRA_TSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of Hazardous Waste...

  15. EPA Facility Registry Service (FRS): CERCLIS_NPL

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  16. EPA Facility Registry Service (FRS): PCS_NPDES_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that are...

  17. EPA Facility Registry Service (FRS): PCS_NPDES

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  18. Functional principles of registry-based service discovery

    NARCIS (Netherlands)

    Sundramoorthy, V.; Tan, C.; Hartel, P.H.; Hartog, den J.I.; Scholten, J.

    2005-01-01

    As Service Discovery Protocols (SDP) are becoming increasingly important for ubiquitous computing, they must behave according to predefined principles. We present the functional Principles of Service Discovery for robust, registry-based service discovery. A methodology to guarantee adherence to

  19. EPA Facility Registry Service (FRS): ER_RMP

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  20. EPA Facility Registry Service (FRS): ER_RCRATSD

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link...

  1. EPA Facility Registry Service (FRS): Facility Interests Dataset - Intranet Download

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in...

  2. Clinical features of paediatric pulmonary hypertension : a registry study

    NARCIS (Netherlands)

    Berger, Rolf M. F.; Beghetti, Maurice; Humpl, Tilman; Raskob, Gary E.; Ivy, D. Dunbar; Jing, Zhi-Cheng; Bonnet, Damien; Schulze-Neick, Ingram; Barst, Robyn J.

    2012-01-01

    Background Paediatric pulmonary hypertension, is an important cause of morbidity and mortality, and is insufficiently characterised in children. The Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension (TOPP) registry is a global, prospective study designed to provide information about

  3. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Power Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  4. EPA Facility Registry Service (FRS): AIRS_AFS_MAJOR

    Data.gov (United States)

    U.S. Environmental Protection Agency — This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link...

  5. 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

  6. 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.

  7. Utility of an Australasian registry for children undergoing radiation treatment

    International Nuclear Information System (INIS)

    Ahern, Verity

    2014-01-01

    The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10–15years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology.

  8. Presenting an Evaluation Model for the Cancer Registry Software.

    Science.gov (United States)

    Moghaddasi, Hamid; Asadi, Farkhondeh; Rabiei, Reza; Rahimi, Farough; Shahbodaghi, Reihaneh

    2017-12-01

    As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the general and specific criteria of the cancer registry software along with their sub-criteria. The evaluation method of this study was chosen as a criteria-based evaluation method based on the findings. The model of this study encompasses various dimensions of cancer registry software and a proper method for evaluating it. The strong point of this evaluation model is the separation between general criteria and the specific ones, while trying to fulfill the comprehensiveness of the criteria. Since this model has been validated, it can be used as a standard to evaluate the cancer registry software.

  9. Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

    Science.gov (United States)

    Tangka, Florence K L; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K; Trebino, Diana; Babcock, Frances; Ewing, Jean

    2016-01-01

    The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

  10. Presenting an evaluation model of the trauma registry software.

    Science.gov (United States)

    Asadi, Farkhondeh; Paydar, Somayeh

    2018-04-01

    Trauma is a major cause of 10% death in the worldwide and is considered as a global concern. This problem has made healthcare policy makers and managers to adopt a basic strategy in this context. Trauma registry has an important and basic role in decreasing the mortality and the disabilities due to injuries resulted from trauma. Today, different software are designed for trauma registry. Evaluation of this software improves management, increases efficiency and effectiveness of these systems. Therefore, the aim of this study is to present an evaluation model for trauma registry software. The present study is an applied research. In this study, general and specific criteria of trauma registry software were identified by reviewing literature including books, articles, scientific documents, valid websites and related software in this domain. According to general and specific criteria and related software, a model for evaluating trauma registry software was proposed. Based on the proposed model, a checklist designed and its validity and reliability evaluated. Mentioned model by using of the Delphi technique presented to 12 experts and specialists. To analyze the results, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved by the experts and professionals, the final version of the evaluation model for the trauma registry software was presented. For evaluating of criteria of trauma registry software, two groups were presented: 1- General criteria, 2- Specific criteria. General criteria of trauma registry software were classified into four main categories including: 1- usability, 2- security, 3- maintainability, and 4-interoperability. Specific criteria were divided into four main categories including: 1- data submission and entry, 2- reporting, 3- quality control, 4- decision and research support. The presented model in this research has introduced important general and specific criteria of trauma registry software

  11. 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.

  12. The Toxicology Investigators Consortium Case Registry--the 2014 Experience.

    Science.gov (United States)

    Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey

    2015-12-01

    The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently

  13. Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

    OpenAIRE

    Casamento, K.; Laverty, A.; Wilsher, M.; Twiss, J.; Gabbay, E.; Glaspole, I.; Jaffe, A.

    2016-01-01

    Background We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. Methods A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were s...

  14. The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

    Science.gov (United States)

    Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

    2014-06-07

    Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data

  15. Effects of surgery on ischaemic mitral regurgitation: a prospective multicentre registry (SIMRAM registry)

    DEFF Research Database (Denmark)

    Lancellotti, P.; Donal, E.; Cosyns, B.

    2008-01-01

    at rest. Exercise echocardiography may help identify a subset of patients at higher risk of cardiovascular events by revealing the dynamic component of IMR. METHODS: A large prospective, multicentre, non-randomized registry is designed to evaluate the effects of surgery on IMR at rest and on its dynamic......AIMS: Functional ischaemic mitral regurgitation (IMR) is common in patients with ischaemic left ventricular dysfunction undergoing coronary artery bypass surgery. Although the presence of IMR negatively affects prognosis, the additional benefit of valve repair is debated, particularly with mild IMR...... component at exercise (z). SIMRAM will enrol approximately 550 patients with IMR in up to 17 centres with clinical and exercise follow-up for 1 year. Three sets of outcomes will be prospectively assessed and several hypotheses will be tested including determinants of adverse outcome and progressive left...

  16. A description and comparison of selected forest carbon registries: a guide for States considering the development of a forest carbon registry

    Science.gov (United States)

    Jessica Call; Jennifer Hayes

    2007-01-01

    There is increasing interest in tools for measuring and reducing emissions of carbon dioxide, a major greenhouse gas. Two tools that have been receiving a lot of attention include carbon markets and carbon registries. Carbon registries are established to record and track net carbon emission levels over time. These registries provide quantifiable and verifiable carbon...

  17. 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.

  18. Statistical aspects of tumor registries, Hiroshima and Nagasaki

    Energy Technology Data Exchange (ETDEWEB)

    Ishida, M

    1961-02-24

    Statistical considerations are presented on the tumor registries established for purpose of studying radiation induced carcinoma in Hiroshima and Nagasaki by observing tumors developing in the survivors of these cities. In addition to describing the background and purpose of the tumor registries the report consists of two parts: (1) accuracy of reported tumor cases and (2) statistical aspects of the incidence of tumors based both on a current population and on a fixed sample. Under the heading background, discussion includes the difficulties in attaining complete registration; the various problems associated with the tumor registries; and the special characteristics of tumor registries in Hiroshima and Nagasaki. Beye's a posteriori probability formula was applied to the Type I and Type II errors in the autopsy data of Hiroshima ABCC. (Type I, diagnosis of what is not cancer as cancer; Type II, diagnosis of what is cancer as noncancer.) Finally, the report discussed the difficulties in estimating a current population of survivors; the advantages and disadvantages of analyses based on a fixed sample and on an estimated current population; the comparison of incidence rates based on these populations using the 20 months' data of the tumor registry in Hiroshima; and the sample size required for studying radiation induced carcinoma. 10 references, 1 figure, 8 tables.

  19. Demographics of US pediatric contact dermatitis registry providers.

    Science.gov (United States)

    Goldenberg, Alina; Jacob, Sharon E

    2015-01-01

    Children are as likely as adults to be sensitized and reactive to contact allergens. However, the prevailing data on pediatric allergic contact dermatitis are quantitatively and qualitatively limited because of a narrow geographic localization of data-reporting providers. The aim of the study was to present the first quarter results from the Loma Linda Pediatric Contact Dermatitis Registry focused on registered providers who self-identified as providing care for pediatric allergic contact dermatitis (ACD) within the United States. The US providers were invited to join the registry via completion of an online, secure, 11-question registration survey addressing demographics and clinical practice essentials. The presented results reflect data gathered within the first quarter of registry recruitment; registration is ongoing. Of 169 responders from 48 states, the majority of providers were female (60.4%), academic (55.6%), and dermatologists (76.3%). Based on individual provider averages, the minimum cumulative number of pediatric patch-test evaluations performed each year ranged between 1372 and 3468 children. The Pediatric Contact Dermatitis Registry provides a description of the current leaders in the realm of pediatric ACD and gaps, which are in need of attention. The registry allows for a collaborative effort to exchange information, educate providers, and foster investigative research with the hope of legislation that can reduce the disease burden of ACD in US children.

  20. Childhood vesicoureteral reflux studies: registries and repositories sources and nosology.

    Science.gov (United States)

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

    Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. Copyright © 2012 Journal of Pediatric Urology Company. All rights reserved.

  1. The Lombardia Stroke Unit Registry: a year experience

    Directory of Open Access Journals (Sweden)

    Giuseppe Micieli

    2010-12-01

    Full Text Available Stroke is the third cause of death and the first long-term disability cause in industrialised countries. It is therefore an important problem, not only from a clinical point of view, but also because of the high costs involved in its management. The results of clinical trials, reviews and meta-analysis highlight the importance of the Stroke Unit in the correct and adequate management of the patient with stroke. This article describes the Lombardia Stroke Unit and the related Stroke Registry. In 2010 this Registry includes 27 Centres and recruits patients with acute stroke or transient ischaemic attacks (TIAs. The Registry aims at measuring performance parameters, identifying guidelines, non-compliance causes, and analysing care processes.

  2. REAC/TS Radiation Accident Registry: An Overview

    Energy Technology Data Exchange (ETDEWEB)

    Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

    2012-12-12

    Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.

  3. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric

    2016-01-01

    survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario...... of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions...... all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health...

  4. Patient-reported outcome measures in arthroplasty registries

    DEFF Research Database (Denmark)

    Rolfson, Ola; Bohm, Eric; Franklin, Patricia

    2016-01-01

    The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain...... should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before...

  5. 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; 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; Nc, Durham; Md, Silver Spring; Japan, Tokyo; Ny, New York; Ri, Providence; Vt, Burlington; Mass, Newton; Colo, Denver; Ariz, Tempe; Calif, Santa Clara; Minn, Minneapolis; Nh, Lebanon

    2018-01-25

    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.Methods and Results: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.

  6. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS - registry Swabia

    Directory of Open Access Journals (Sweden)

    Nagel Gabriele

    2013-02-01

    Full Text Available Abstract Background The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS registry Swabia, located in the South of Germany. Methods/Design The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010 and prospective (from 01.10.2010 collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case–control study was implemented based on the registry that also included the collection of various biological materials. Retrospectively, 420 patients (222 men and 198 women were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing. Discussion The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

  7. Development of an International Prostate Cancer Outcomes Registry.

    Science.gov (United States)

    Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J

    2016-04-01

    To establish a Prostate Cancer Outcomes Registry-Australia and New Zealand (PCOR-ANZ) for monitoring outcomes of prostate cancer treatment and care, in a cost-effective manner. Stakeholders were recruited based on their interest, importance in achieving the monitoring and reporting of clinical practice and patient outcomes, and in amalgamation of existing registries. Each participating jurisdiction is responsible for local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ. To establish each local registry, hospitals and clinicians within a jurisdiction were approached to voluntarily contribute to the registry following relevant ethical approval. Patient contact occurs following notification of prostate cancer through a hospital or pathology report, or from a cancer registry. Patient registration is based on an opt-out model. The PCOR-ANZ is a secure web-based registry adhering to ISO 27001 standards. Based on a standardised minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient reported quality of life, are collected. Eight of nine jurisdictions have agreed to contribute to the PCOR-ANZ. Each jurisdiction has commenced implementation of necessary infrastructure to support rapid rollout. PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. PCOR-ANZ will provide a useful resource of risk-adjusted evidence-based data to clinicians, hospitals, and decision makers on prostate cancer clinical practice. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

  8. The Toxicology Investigators Consortium Case Registry-the 2015 Experience.

    Science.gov (United States)

    Farrugia, Lynn A; Rhyee, Sean H; Campleman, Sharan L; Ruha, Anne-Michelle; Weigand, Timothy; Wax, Paul M; Brent, Jeffrey

    2016-09-01

    The American College of Medical Toxicology established the Toxicology Investigators Consortium (ToxIC) Case Registry in 2010. The Registry contains all medical toxicology consultations performed at participating sites. The Registry has continued to grow since its inception, and as of December 31, 2015, contains 43,099 cases. This is the sixth annual report of the ToxIC Registry, summarizing the additional 8115 cases entered in 2015. Cases were identified by a query of the Registry for all cases entered between January 1 and December 31, 2015. Specific data reviewed for analysis included demographics (age, race, gender), source of consultation, reason for consultation, agents and agent classes involved in exposures, signs, symptoms, clinical findings, fatalities, and treatment. By the end of 2015, there were 50 active sites, consisting of 101 separate health-care facilities; 51.2 % of cases involved females. Adults between the ages of 19 and 65 made up the majority (64.2 %) of Registry cases. Caucasian race was the most commonly reported (55.6 %); 9.6 % of cases were identified as Hispanic ethnicity. Inpatient and emergency department referrals were by far the most common referral sources (92.9 %). Intentional pharmaceutical exposures remained the most frequent reason for consultation, making up 52.3 % of cases. Of these intentional pharmaceutical exposures, 69 % represented an attempt at self-harm, and 85.6 % of these were a suicide attempt. Nonopioid analgesics, sedative-hypnotics, and antidepressant agents were the most commonly reported agent classes in 2015. Almost one-third of Registry cases involved a diagnosed toxidrome (32.8 %), with a sedative-hypnotic toxidrome being the most frequently described. Significant vital sign abnormalities were recorded in 25.3 % of cases. There were 98 fatalities reported in the Registry (1.2 %). Adverse drug reactions were reported in 4.3 % of cases. Toxicological treatment was given in 65.3 % of cases, with 33.0

  9. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2007-01-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions.

  10. The Medical Birth Registry of Norway – An international perspective

    Directory of Open Access Journals (Sweden)

    Allen J. Wilcox

    2009-10-01

    Full Text Available Some of the most practical questions of perinatal medicine are regarding couples who have had pregnancy problems in the past, and their risk of having such problems in future pregnancies. For example, if a couple has a child with a birth defect, what are their chances that their next child will have a defect? The key to answering such questions is the availability of linked data such as those provided by the Medical Birth Registry of Norway. Such linked data provide a unique resource for addressing a broad range of questions in perinatal epidemiology. The Medical Birth Registry of Norway has been a pioneer in answering such questions

  11. How Suitable Are Registry Data for Recurrence Risk Calculations?

    DEFF Research Database (Denmark)

    Ellesøe, Sabrina Gade; Jensen, Anders Boeck; Ängquist, Lars Henrik

    2016-01-01

    if registry data are used indiscriminately. Here, we investigated the consequences of misclassifications for the RRR using validated diagnoses on Danish patients with familial CHD. METHODS: Danish citizens are assigned a civil registration number (CPR number) at birth or immigration, which acts as a unique...... of the PPVs of diagnoses in the Danish registries, and from this, we deduced the false discovery rate (FDR). To measure the consequences on the RRR, the FDR was applied to a simulated data set with true RRR values of 2 and 10. RESULTS: We validated diagnoses of 2,442 patients from 1,593 families. Of these...

  12. A need for national registry of radiation workers

    International Nuclear Information System (INIS)

    Marathe, P.K.; Krishnan, D.; Massand, O.P.; Dhond, R.V.

    1988-01-01

    In India about 33000 radiation workers are monitored regularly from a centralised Personnel Monitoring Service conducted by the Division of Radiological Protection, B.A.R.C. In view of the large dose data accumulated over the past thirty years it is only logical to investigate for biological effects if any. The need to initiate National Registry of Radiation Workers (NRRW) is pointed out. Such a registry is in force in U.K., Canada, France and Japan etc. Even in case of negative findings, such an exercise would help in allaying fears among radiation workers in particular and the public in general. (author)

  13. Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

    Science.gov (United States)

    Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

    2017-06-01

    The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

  14. Designing exposure registries for improved tracking of occupational exposure and disease.

    Science.gov (United States)

    Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

    2016-06-27

    Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

  15. BioSWR--semantic web services registry for bioinformatics.

    Directory of Open Access Journals (Sweden)

    Dmitry Repchevsky

    Full Text Available Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL. Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL. BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  16. 77 FR 24103 - National Registry of Certified Medical Examiners

    Science.gov (United States)

    2012-04-20

    ... competence through periodic training and testing. Following establishment of the National Registry and a... they can determine effectively whether a CMV driver's medical fitness for duty meets FMCSA's standards... understanding of those standards, and maintain and demonstrate competence through periodic training and testing...

  17. Holt Oram syndrome : a registry-based study in Europe

    NARCIS (Netherlands)

    Barisic, Ingeborg; Boban, Ljubica; Greenlees, Ruth; Garne, Ester; Wellesley, Diana; Calzolari, Elisa; Addor, Marie-Claude; Arriola, Larraitz; Bergman, Jorieke E. H.; Braz, Paula; Budd, Judith L. S.; Gatt, Miriam; Haeusler, Martin; Khoshnood, Babak; Klungsoyr, Kari; McDonnell, Bob; Nelen, Vera; Pierini, Anna; Queisser-Wahrendorf, Annette; Rankin, Judith; Rissmann, Anke; Rounding, Catherine; Tucker, David; Verellen-Dumoulin, Christine; Dolk, Helen

    2014-01-01

    Background: Holt-Oram syndrome (HOS) is an autosomal dominant disorder characterised by upper limb anomalies and congenital heart defects. We present epidemiological and clinical aspects of HOS patients using data from EUROCAT (European Surveillance of Congenital Anomalies) registries. Methods: The

  18. Regional Cancer Registries – 20 Years and Growing

    Science.gov (United States)

    The NCI, Center for Global Health (CGH), the University of California at Irvine, the Middle East Cancer Consortium, and the International Agency for Research on Cancer partnered in support of the training course, held in Ankara, Turkey this past October, on The Uses of Cancer Registry Data in Cancer Control Research.

  19. BioSWR – Semantic Web Services Registry for Bioinformatics

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll.

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license. PMID:25233118

  20. BioSWR--semantic web services registry for bioinformatics.

    Science.gov (United States)

    Repchevsky, Dmitry; Gelpi, Josep Ll

    2014-01-01

    Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

  1. Road traffic noise and registry based use of sleep medication.

    NARCIS (Netherlands)

    Evandt, Jorunn; Oftedal, Bente; Krog, Norun Hjertager; Skurtveit, Svetlana; Nafstad, Per; Schwarze, Per E; Skovlund, Eva; Houthuijs, Danny; Aasvang, Gunn Marit

    2017-01-01

    Road traffic noise has been associated with adverse health effects including sleep disturbances. Use of sleep medication as an indicator of sleeping problems has rarely been explored in studies of the effects of traffic noise. Furthermore, using registry data on sleep medications provides an

  2. Establishing a Twin Registry in Guinea-Bissau

    DEFF Research Database (Denmark)

    Bjerregaard-Andersen, Morten; Gomes, Margarida A; Joaquím, Luis C

    2013-01-01

    represent a powerful tool. Though twin studies have been carried out by the Bandim Health Project for more than 30 years, the renewed registry described here was officially established in 2009 and includes both a cohort of newborn twins and a cohort of young and adult twins. Currently more than 1,500 twins...

  3. 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.

  4. The Ped-APS Registry: the antiphospholipid syndrome in childhood.

    Science.gov (United States)

    Avcin, T; Cimaz, R; Rozman, B

    2009-09-01

    In recent years, antiphospholipid syndrome (APS) has been increasingly recognised in various paediatric autoimmune and nonautoimmune diseases, but the relatively low prevalence and heterogeneity of APS in childhood made it very difficult to study in a systematic way. The project of an international registry of paediatric patients with APS (the Ped-APS Registry) was initiated in 2004 to foster and conduct multicentre, controlled studies with large number of paediatric APS patients. The Ped-APS Registry is organised as a collaborative project of the European Forum on Antiphospholipid Antibodies and Juvenile Systemic Lupus Erythematosus Working Group of the Paediatric Rheumatology European Society. Currently, it documents a standardised clinical, laboratory and therapeutic data of 133 children with antiphospholipid antibodies (aPL)-related thrombosis from 14 countries. The priority projects for future research of the Ped-APS Registry include prospective enrollment of new patients with aPL-related thrombosis, assessment of differences between the paediatric and adult APS, evaluation of proinflammatory genotype as a risk factor for APS manifestations in childhood and evaluation of patients with isolated nonthrombotic aPL-related manifestations.

  5. The European Registry for Patients with Mechanical Circulatory Support (EUROMACS)

    DEFF Research Database (Denmark)

    de By, Theo M M H; Mohacsi, Paul; Gummert, Jan

    2015-01-01

    other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry...

  6. Implementation and Analysis of Initial Trauma Registry in Iquitos, Peru

    Directory of Open Access Journals (Sweden)

    Vincent Duron

    2016-10-01

    Full Text Available Background: In Peru, 11% of deaths are due to trauma. Iquitos is a large underserved Peruvian city isolated from central resources by its geography. Our objective was to implement a locally driven trauma registry to sustainably improve trauma healthcare in this region. Methods: All trauma patients presenting to the main regional referral hospital were included in the trauma registry. A pilot study retrospectively analyzed data from the first two months after implementation. Results: From March to April 2013, 572 trauma patients were entered into the database. Average age was 26.9 years. Ten percent of patients presented more than 24 hours after injury. Most common mechanisms of injury were falls (25.5%, motor vehicle collisions (23.3%, and blunt assault (10.5%. Interim analysis revealed that 99% of patients were entered into the database. However, documentation of vital signs was poor: 42% of patients had temperature, 26% had oxygen saturation documented. After reporting to registry staff, a significant increase in temperature (42 to 97%, P < 0.001 and oxygen saturation (26 to 92%, P < 0.001 documentation was observed. Conclusion: A trauma registry is possible to implement in a resource-poor setting. Future efforts will focus on analysis of data to enhance prevention and treatment of injuries in Iquitos.

  7. Data Type Registry - Cross Road Between Catalogs, Data And Semantics

    Science.gov (United States)

    Richard, S. M.; Zaslavsky, I.; Bristol, S.

    2017-12-01

    As more data become accessible online, the opportunity is increasing to improve search for information within datasets and for automating some levels of data integration. A prerequisite for these advances is indexing the kinds of information that are present in datasets and providing machine actionable descriptions of data structures. We are exploring approaches to enabling these capabilities in the EarthCube DigitalCrust and Data Discovery Hub Building Block projects, building on the Data type registry (DTR) workgroup activity in the Research Data Alliance. We are prototyping a registry implementation using the CNRI Cordra platform and API to enable 'deep registration' of datasets for building hydrogeologic models of the Earth's Crust, and executing complex science scenarios for river chemistry and coral bleaching data. These use cases require the ability to respond to queries such as: What are properties of Entity X; What entities include property Y (or L, M, N…), and What DataTypes are about Entity X and include property Y. Development of the registry to enable these capabilities requires more in-depth metadata than is commonly available, so we are also exploring approaches to analyzing simple tabular data to automate recognition of entities and properties, and assist users with establishing semantic mappings to data integration vocabularies. This poster will review the current capabilities and implementation of a data type registry.

  8. 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.

  9. 78 FR 6853 - Agency Information Collection (Agent Orange Registry Code Sheet) Activities Under OMB Review

    Science.gov (United States)

    2013-01-31

    ... able to notify Vietnam era veterans who served in the Republic of Vietnam of any increased health risks...-related registry administrated by VA that is similar to the Persian Gulf War Veterans Health Registry...

  10. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Science.gov (United States)

    2012-11-19

    ... information contained in AOR to be able to notify Vietnam era veterans who served in the Republic of Vietnam... Gulf War Veterans Health Registry. Registry examination is provided to veterans who served in Korea in...

  11. Pilot for the Australian Breast Device Registry (ABDR): a national opt-out clinical quality registry for breast device surgery.

    Science.gov (United States)

    Hopper, Ingrid; Best, Renee L; McNeil, John J; Mulvany, Catherine M; Moore, Colin C M; Elder, Elisabeth; Pase, Marie; Cooter, Rodney D; Evans, Sue M

    2017-12-28

    To establish a pilot clinical quality registry (CQR) to monitor the quality of care and device performance for breast device surgery in Australia. All patients having breast device surgery from contributing hospitals in Australia. A literature review was performed which identified quality indicators for breast device surgery. A pilot CQR was established in 2011 to capture prospective data on breast device surgery. An interim Steering Committee and Management Committee were established to provide clinical governance, and guide quality indicator selection. The registry's minimum dataset was formulated in consultation with stakeholder groups; potential quality indicators were assessed in terms of (1) importance and relevance, (2) usability, (3) feasibility to collect and (4) scientific validity. Data collection was by a two-sided paper-based form with manual data entry. Seven sites were recruited, including one public hospital, four private hospitals and two day surgeries. Patients were recruited and opt-out consent used. The pilot breast device registry provides high-quality population-based data. It provides a model for developing a national CQR for breast devices; its minimum dataset and quality indicators reflect the opinions of the broad range of stakeholders. It is easily scalable, and has formed the basis for other international surgical groups establishing similar registries. © 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.

  12. The German Aortic Valve Registry (GARY): a nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis.

    Science.gov (United States)

    Beckmann, A; Hamm, C; Figulla, H R; Cremer, J; Kuck, K H; Lange, R; Zahn, R; Sack, S; Schuler, G C; Walther, T; Beyersdorf, F; Böhm, M; Heusch, G; Funkat, A K; Meinertz, T; Neumann, T; Papoutsis, K; Schneider, S; Welz, A; Mohr, F W

    2012-07-01

    Background The increasing prevalence of severe aortic valve defects correlates with the increase of life expectancy. For decades, surgical aortic valve replacement (AVR), under the use of extracorporeal circulation, has been the gold standard for treatment of severe aortic valve diseases. In Germany ~12,000 patients receive isolated aortic valve surgery per year. For some time, percutaneous balloon valvuloplasty has been used as a palliative therapeutic option for very few patients. Currently, alternatives for the established surgical procedures such as transcatheter aortic valve implantation (TAVI) have become available, but there are only limited data from randomized studies or low-volume registries concerning long-time outcome. In Germany, the implementation of this new technology into hospital care increased rapidly in the past few years. Therefore, the German Aortic Valve Registry (GARY) was founded in July 2010 including all available therapeutic options and providing data from a large quantity of patients.Methods The GARY is assembled as a complete survey for all invasive therapies in patients with relevant aortic valve diseases. It evaluates the new therapeutic options and compares them to surgical AVR. The model for data acquisition is based on three data sources: source I, the mandatory German database for external performance measurement; source II, a specific registry dataset; and source III, a follow-up data sheet (generated by phone interview). Various procedures will be compared concerning observed complications, mortality, and quality of life up to 5 years after the initial procedure. Furthermore, the registry will enable a compilation of evidence-based indication criteria and, in addition, also a comparison of all approved operative procedures, such as Ross or David procedures, and the use of different mechanical or biological aortic valve prostheses.Results Since the launch of data acquisition in July 2010, almost all institutions performing

  13. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Science.gov (United States)

    2010-05-25

    ...] Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established.... The agency is also seeking comments from industry on the Reportable Food Registry requirements, and... the implementation of the Reportable Food Registry on September 8, 2009, and informs industry about...

  14. Improving Diabetes Outcomes Using a Web-Based Registry and Interactive Education: A Multisite Collaborative Approach

    Science.gov (United States)

    Morrow, Robert W.; Fletcher, Jason; Kelly, Kim F.; Shea, Laura A.; Spence, Maureen M.; Sullivan, Janet N.; Cerniglia, Joan R.; Yang, YoonJung

    2013-01-01

    Introduction: To support the adoption of guideline concordant care by primary care practices, the New York Diabetes Coalition (NYDC) promoted use of an electronic diabetes registry and developed an interactive educational module on using the registry and improving patient communication. The NYDC hypothesized that use of a registry with immediate…

  15. 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...

  16. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Science.gov (United States)

    2011-06-23

    ... Quarantine Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION: Notice.... FOR FURTHER INFORMATION CONTACT: For information on the PPQ Stakeholder Registry, contact Ms. Donna L... Quarantine (PPQ) stakeholder registry is an email subscription service that allows individuals to receive...

  17. Registry Evaluation of Digital Ulcers in Systemic Sclerosis

    Directory of Open Access Journals (Sweden)

    Felice Galluccio

    2010-01-01

    Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

  18. Developing a registry of workers involved in nanotechnology: BASF experiences.

    Science.gov (United States)

    David, Raymond M; Nasterlack, Michael; Engel, Stefan; Conner, Patrick R

    2011-06-01

    To assist BASF in the establishment of a registry of workers involved in nanotechnology. The initial step was a complete inventory of nanomaterials and sites of use. Guidance was developed to clarify which particulate nanomaterials were to be included in the survey. Site management was then contacted by the medical department to obtain a list of workers. The time line for collecting data ranged from several months to a year, depending on the information needed, and presented challenges based on the lack of global definition and labeling of nanomaterials. Less than 50 nanomaterials are used as raw materials in less than 10% of the sites globally. In North America, less than 5% of sites and 5% workers use nanomaterials. Further work is required to integrate the inventory, registry, and exposure assessments.

  19. 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.

  20. Integration of data: the Nanomaterial Registry project and data curation

    International Nuclear Information System (INIS)

    Guzan, K A; Mills, K C; Gupta, V; Murry, D; Ostraat, M L; Scheier, C N; Willis, D A

    2013-01-01

    Due to the use of nanomaterials in multiple fields of applied science and technology, there is a need for accelerated understanding of any potential implications of using these unique and promising materials. There is a multitude of research data that, if integrated, can be leveraged to drive toward a better understanding. Integration can be achieved by applying nanoinformatics concepts. The Nanomaterial Registry is using applied minimal information about nanomaterials to support a robust data curation process in order to promote integration across a diverse data set. This paper describes the evolution of the curation methodology used in the Nanomaterial Registry project as well as the current procedure that is used. Some of the lessons learned about curation of nanomaterial data are also discussed. (paper)

  1. Is it feasible to merge data from national shoulder registries?

    DEFF Research Database (Denmark)

    Rasmussen, Jeppe V; Brorson, Stig; Hallan, Geir

    2016-01-01

    Background The Nordic Arthroplasty Register Association was initiated in 2007, and several papers about hip and knee arthroplasty have been published. Inspired by this, we aimed to examine the feasibility of merging data from the Nordic national shoulder arthroplasty registries by defining a common...... as a set of variables containing only data that all registries could deliver and where consensus according to definition of the variables could be made. Results We agreed on a data set containing patient-related data (age, gender, and diagnosis), operative data (date, arthroplasty type and brand), and data...... in case of revision (date, reason for revision, and new arthroplasty brand). From 2004 to 2013, there were 19,857 primary arthroplasties reported. The most common indications were osteoarthritis (35%) and acute fracture (34%). The number of arthroplasties and especially the number of arthroplasties...

  2. 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

  3. Defining incidental perineural invasion: the need for a national registry.

    Science.gov (United States)

    Buchanan, Lauren; De'Ambrosis, Brian; DeAmbrosis, Kathryn; Warren, Timothy; Huilgol, Shyamala; Soyer, H Peter; Panizza, Benedict

    2014-05-01

    This article by the Perineural Invasion (PNI) Registry Group aims to clarify clinical and histopathological ambiguities surrounding PNI in non-melanoma skin cancer (NMSC). PNI is reportedly present in approximately 2-6% of cases of NMSC and is associated with greater rates of morbidity and mortality. The distinction between clinical PNI and incidental PNI is somewhat unclear, especially in regard to management and prognosis. One important objective of the PNI Registry is to develop a standardised method of classifying perineural invasion. Hence, in this article we propose a definition for PNI and for its sub-classification. This article also provides a critical analysis of the current literature on the treatment of incidental PNI by evaluating the key cohort studies that have investigated the use of surgery or radiotherapy in the management of incidental PNI. At present, there are no universal clinical guidelines that specify the acceptable treatment of NMSC exhibiting incidental PNI. Consequently, patients often receive surgery with varying wider margins, or radiotherapy despite the limited evidence substantiating such management options. It is evident from the existing literature that current opinion is divided over the benefit of adjuvant radiotherapy. Certain prognostic factors have been proposed, such as the size and depth of tumour invasion, nerve diameter, the presence of multifocal PNI and the type of tumour. The PNI Registry is a web-based registry that has been developed to assist in attaining further data pertaining to incidental PNI in NMSC. It is envisaged that this information will provide the foundation for identifying and defining best practice in managing incidental PNI. © 2013 The Australasian College of Dermatologists.

  4. Pleural Mesothelioma Surveillance: Validity of Cases from a Tumour Registry

    Directory of Open Access Journals (Sweden)

    France Labrèche

    2012-01-01

    Full Text Available BACKGROUND: Pleural mesothelioma is a rare tumour associated with exposure to asbestos fibres. Fewer than than one-quarter of cases registered in the Quebec Tumour Registry (QTR have been compensated as work-related. While establishing a surveillance system, this led to questioning as to whether there has been over-registration of cases that are not authentic pleural mesotheliomas in the QTR.

  5. [Acute myocardial infarction in Morocco: FES-AMI registry data].

    Science.gov (United States)

    Akoudad, H; El Khorb, N; Sekkali, N; Mechrafi, A; Zakari, N; Ouaha, L; Lahlou, I

    2015-12-01

    Acute myocardial infarction is the most dangerous complication of coronary atherothrombosis. There are several disparities in regard to its management around the world. The aim of this study is to analyze the specificities of management of acute myocardial infarction in Morocco. FES-AMI (Fès Acute Myocardial Infarction) is a prospective monocentric registry conducted in cardiology department of Hassan II university hospital in Fès. In this registry, we enrolled patients with acute myocardial infarction who presented within 5 days after symptom onset. From January 2005 to August 2015, we enrolled 1835 patients. Seventy-five percent of patients were males and mean age was 60 years old. Fifty-one percent of patients were smokers, 27% were hypertensives and 14% were diabetics. Sixty-six percent of patients had more than 2 risk factors. Time from symptom onset to hospital admission was less than six hours for 40% of the patients. Thirty-six percent of patients were admitted more than twelve hours after the onset of chest pain. Only 37% of patients received reperfusion therapy, 31% with in-hospital thrombolysis and 6% with primary angioplasty. In-hospital mortality was 7.6%. The patients enrolled in our registry have late presentation of acute myocardial infarction and less rate of reperfusion therapy. Furthermore, the majority of our patients have multiple risk factors and this result underlines the failure of preventive interventions. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  6. Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection.

    Science.gov (United States)

    Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

    2016-12-01

    The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. Copyright © 2016 Elsevier Ltd. All rights reserved.

  7. Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection☆

    Science.gov (United States)

    Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

    2018-01-01

    Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $ = 60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. PMID:27726981

  8. Missing data in trauma registries: A systematic review.

    Science.gov (United States)

    Shivasabesan, Gowri; Mitra, Biswadev; O'Reilly, Gerard M

    2018-03-30

    Trauma registries play an integral role in trauma systems but their valid use hinges on data quality. The aim of this study was to determine, among contemporary publications using trauma registry data, the level of reporting of data completeness and the methods used to deal with missing data. A systematic review was conducted of all trauma registry-based manuscripts published from 01 January 2015 to current date (17 March 2017). Studies were identified by searching MEDLINE, EMBASE, and CINAHL using relevant subject headings and keywords. Included manuscripts were evaluated based on previously published recommendations regarding the reporting and discussion of missing data. Manuscripts were graded on their degree of characterization of such observations. In addition, the methods used to manage missing data were examined. There were 539 manuscripts that met inclusion criteria. Among these, 208 (38.6%) manuscripts did not mention data completeness and 88 (16.3%) mentioned missing data but did not quantify the extent. Only a handful (n = 26; 4.8%) quantified the 'missingness' of all variables. Most articles (n = 477; 88.5%) contained no details such as a comparison between patient characteristics in cohorts with and without missing data. Of the 331 articles which made at least some mention of data completeness, the method of managing missing data was unknown in 34 (10.3%). When method(s) to handle missing data were identified, 234 (78.8%) manuscripts used complete case analysis only, 18 (6.1%) used multiple imputation only and 34 (11.4%) used a combination of these. Most manuscripts using trauma registry data did not quantify the extent of missing data for any variables and contained minimal discussion regarding missingness. Out of the studies which identified a method of managing missing data, most used complete case analysis, a method that may bias results. The lack of standardization in the reporting and management of missing data questions the validity of

  9. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia

    OpenAIRE

    Nagel, Gabriele; ?nal, Hatice; Rosenbohm, Angela; Ludolph, Albert C; Rothenbacher, Dietrich

    2013-01-01

    Abstract Background The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany. M...

  10. Clinical registry for rheumatoid arthritis; a preliminary analysis

    International Nuclear Information System (INIS)

    Fakhr, A.; Hakim, F.; Zaidi, S.K.; Sharif, A.

    2017-01-01

    To establish a clinical registry for Rheumatoid Arthritis and delineate the most common symptoms that rheumatoid arthritis (RA) patients experience in our set up. Study Design: Cross sectional study. Place and Duration of Study: Study was carried out at Military Hospital (MH) Rawalpindi at Rheumatology Department during the period of Jan 2013 to Jun 2015. Material and Methods: A clinical registry for Rheumatoid Arthritis was developed as per criteria jointly developed by American College of Rheumatology (ACR) along with European League against Rheumatism (EULAR) (2010). Fifty-eight patients were registered after their informed consent and approval by Military Hospital (MH) Rawalpindi ethical committee. Age, gender and relevant clinical parameters of RA patients were recorded on case report forms and stored for analysis in the RA registry in Excel 2010. The figures were reported in frequencies and percentages. Results: Multiple joint pains (48.28%), fever (24.14%), morning stiffness of joints (22.41%) were the most common symptoms in RA patients. Other clinical manifestations included painful bilateral swollen joints (13.79%), pain in different parts of the body (10.34%), Raynaud's phenomenon (10.34%), malaise (8.62%), swollen body parts (8.62%), ulcers (8.62%), fatigue (6.90%), nodules on skin/elbow/interphalangeal joints (6.90%), deformities of fingers/ hand (3.45%), redness of eyes (3.45%), body rash (3.45%), inability to walk (3.45%), cervical lymphadenopathy (1.72%), stiffness of spine (1.72%) and myalgias (1.72%). Conclusion: It is concluded that multiple joint pains, fever and morning stiffness of joints are the most common symptoms of RA patients. (author)

  11. Results from a multicentre international registry of familial Mediterranean fever

    DEFF Research Database (Denmark)

    Ozen, Seza; Demirkaya, Erkan; Amaryan, Gayane

    2014-01-01

    BACKGROUND AND AIM: Familial Mediterranean fever (FMF) is an autoinflammatory disease caused by mutations of the MEFV gene. We analyse the impact of ethnic, environmental and genetic factors on the severity of disease presentation in a large international registry. METHODS: Demographic, genetic....../year and more frequent arthritis, pericarditis, chest pain, abdominal pain and vomiting compared to the other two groups. Multivariate analysis showed that the variables independently associated with severity of disease presentation were country of residence, presence of M694V mutation and positive family...

  12. The First Year of the AEVD Primary Cutaneous Lymphoma Registry.

    Science.gov (United States)

    Peñate, Y; Servitje, O; Machan, S; Fernández-de-Misa, R; Estrach, M T; Acebo, E; Mitxelena, J; Ramón, M D; Flórez, A; Blanes, M; Morillo, M; Medina, S; Bassas, J; Zayas, A; Espinosa, P; Pérez, A; Gónzalez-Romero, N; Domínguez, J D; Muniesa, C; López Robles, J; Combalia, A; Yanguas, I; Suh, H; Polo-Rodríguez, I; Bielsa, I; Mateu, A; Ferrer, B; Descalzo, M A; García-Doval, I; Ortiz-Romero, P L

    2018-04-18

    Primary cutaneous lymphomas are uncommon. This article describes the Primary Cutaneous Lymphoma Registry of the Spanish Academy of Dermatology and Venereology (AEDV) and reports on the results from the first year. Disease registry for patients with primary cutaneous lymphoma. The participating hospitals prospectively recorded data on diagnosis, treatment, tests, and disease stage for all patients with primary cutaneous lymphoma. A descriptive analysis was performed. In December 2017, the registry contained data on 639 patients (60% male) from 16 university hospitals. The most common diagnoses, in order of frequency, were mycosis fungoides/Sézary syndrome (MF/SS) (348 cases, 55%), primary cutaneous B-cell lymphoma (CBCL) (184 cases, 29%), primary cutaneous CD30 + T-cell lymphoproliferative disorder (CD30 + CLPD) (70 cases, 11%), and other types of T-cell lymphoma (37 cases, 5%). In total, 105 (16.5%) of the cases recorded were incident cases. The most common diagnosis in the MF/SS group was classic MF (77.3%). Half of the patients with MF had stage IA disease when diagnosed, and the majority were either in partial remission (32.5%) or had stable disease (33.1%). The most widely used treatments were topical corticosteroids (90.8%) and phototherapy. The most common form of primary CBCL was marginal zone lymphoma (50%). Almost all of the patients had cutaneous involvement only and nearly half had stage T1a disease. Most (76.1%) were in complete remission. The main treatments were surgery (55.4%) and radiotherapy (41.9%). The most common diagnosis in patients with CD30 + CLPD was lymphomatoid papulosis (68.8%). Most of the patients (31.4%) had stage T3b disease and half were in complete remission. The most common treatments were topical corticosteroids (68.8%) and systemic chemotherapy (32.9%). The characteristics of patients with primary cutaneous lymphoma in Spain do not differ from those described in other series in the literature. The registry will facilitate

  13. Occupational dose assessment and national dose registry system in Iran

    International Nuclear Information System (INIS)

    Jafari-Zadeh, M.; Nazeri, F.; Hosseini-Pooya, S. M.; Taheri, M.; Gheshlaghi, F.; Kardan, M. R.; Babakhani, A.; Rastkhah, N.; Yousefi-Nejad, F.; Darabi, M.; Oruji, T.; Gholamali-Zadeh, Z.; Karimi-Diba, J.; Kazemi-Movahed, A. A.; Dashti-Pour, M. R.; Enferadi, A.; Jahanbakhshian, M. H.; Sadegh-Khani, M. R.

    2011-01-01

    This report presents status of external and internal dose assessment of workers and introducing the structure of National Dose Registry System of Iran (NDRSI). As well as types of individual dosemeters in use, techniques for internal dose assessment are presented. Results obtained from the International Atomic Energy Agency intercomparison programme on measurement of personal dose equivalent H p (10) and consistency of the measured doses with the delivered doses are shown. Also, implementation of dosimetry standards, establishment of quality management system, authorisation and approval procedure of dosimetry service providers are discussed. (authors)

  14. Establishment and use of national registries for actinide elements in humans

    International Nuclear Information System (INIS)

    1996-05-01

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab

  15. [Registries for rare diseases : OSSE - An open-source framework for technical implementation].

    Science.gov (United States)

    Storf, Holger; Schaaf, Jannik; Kadioglu, Dennis; Göbel, Jens; Wagner, Thomas O F; Ückert, Frank

    2017-05-01

    Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard. The use of a central MDR allows for sharing the same data elements across any number of registries, thus providing a technical prerequisite for making data comparable and mergeable between registries and promoting interoperability.With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations. Using the federated search feature, data for clinical studies can be identified across registries. Data integrity, however, remains intact since no actual data leaves the premises without the owner's consent. Additionally, registry solutions other than OSSE can participate via the OSSE bridgehead, which acts as a translator between OSSE registry networks and non-OSSE registries. The pseudonymization service Mainzelliste adds further data protection.Currently, more than 10 installations are under construction in clinical environments (including university hospitals in Frankfurt, Hamburg, Freiburg and Münster). The feedback given by the users will influence further development of OSSE. As an example, the installation process of the registry for undiagnosed patients at University Hospital Frankfurt is described in more detail.

  16. Establishment and use of national registries for actinide elements in humans

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-05-01

    This TECDOC covers all aspects of the establishment and use of registries for actinide elements in Member States. These aspects include assessing the need for such registries; defining scope of the work and developing objectives; administration; organization and staffing; policies; practices; procedures; protocols; registration and enrollment; data collection and evaluation; establishing and analytical laboratory; publication of results and application of findings. Not all aspects will be relevant to all Member States establishing such registries. 1 tab.

  17. The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency.

    Science.gov (United States)

    Steinhagen-Thiessen, Elisabeth; Stroes, Erik; Soran, Handrean; Johnson, Colin; Moulin, Philippe; Iotti, Giorgio; Zibellini, Marco; Ossenkoppele, Bas; Dippel, Michaela; Averna, Maurizio R

    2017-07-01

    A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera ® ) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in 2014 as part of its Risk Management Plan. The aim of this publication is to introduce the GENIALL Registry within a structured literature review of registries in rare genetic lipid disorders. A total of 11 relevant initiatives/registries were identified (homozygous Familial Hypercholesterolemia (hoFH) [n = 5]; LPLD [n = 1]; Lysosomal Acid Lipase Deficiency [LALD, n = 1], detection of mutations in genetic lipid disorders [n = 4]). Besides one product registry in hoFH and the LALD registry, all other initiatives are local or country-specific. GENIALL is the first global prospective registry in LPLD that will collect physician and patient generated data on the natural course of LPLD, as well as long-term outcomes of gene therapy. There is a limited number of international initiatives focusing on the natural course of specific rare genetic lipid disorders. The GENIALL LPLD Registry could be the first step towards a future broader global initiative that collects data related to familial chylomicronemia syndrome and their underlying genetic causes. Copyright © 2016. Published by Elsevier B.V.

  18. Feasibility of establishing an Australian ACL registry: a pilot study by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR).

    Science.gov (United States)

    Lekkas, Christina; Clarnette, Richard; Graves, Stephen E; Rainbird, Sophia; Parker, David; Lorimer, Michelle; Paterson, Roger; Roe, Justin; Morris, Hayden; Feller, Julian A; Annear, Peter; Forster, Ben; Hayes, David

    2017-05-01

    Rupture of the anterior cruciate ligament (ACL) is a common and debilitating injury that impacts significantly on knee function and risks the development of degenerative arthritis. The outcome of ACL surgery is not monitored in Australia. The optimal treatment is unknown. Consequently, the identification of best practice in treating ACL is crucial to the development of improved outcomes. The Australian Knee Society (AKS) asked the Australian Orthopaedic Association (AOA) to consider establishing a national ACL registry. As a first step, a pilot study was undertaken by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) to test the hypothesis that collecting the required information in the Australian setting was possible. Surgeons completed an operative form which provided comprehensive information on the surgery undertaken. Patients provided pre- and post-operative questionnaires including the Knee Injury and Osteoarthritis Outcome Score (KOOS) and the Marx Activity Scale (MA Scale). The number of ACL procedures undertaken at each hospital during the recruitment period was compared against State Government Health Department separation data. A total of 802 patients were recruited from October 2011 to January 2013. The overall capture rate for surgeon-derived data was 99%, and the capture rate for the pre-operative patient questionnaire was 97.9%. At 6 months, patient-reported outcomes were obtained from 55% of patients, and 58.5% of patients at 12 months. When checked against State Government Health Department separation data, 31.3% of procedures undertaken at each study hospital were captured in the study. It is possible to collect surgeon-derived and pre-operative patient-reported data, following ACL reconstruction in Australia. The need to gain patient consent was a limiting factor to participation. When patients did consent to participate in the study, we were able to capture nearly 100% of surgical procedures. Patient consent

  19. 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...

  20. [Implantation of a hospital registry of hereditary nonpolyposis colorectal cancer].

    Science.gov (United States)

    Reyes, J; Ginard, D; Barranco, L; Escarda, A; Vanrell, M; Mariño, Z; Garau, I; Llompart, A; Gayà, J; Obrador, A

    2006-10-01

    Identification of patients with hereditary nonpolyposis colorectal cancer (HNPCC) can allow colorectal cancer (CRC) prevention through colonoscopy and polypectomies. The purpose of this study was to report the clinical characteristics of HNPCC families in our registry. HNPCC was identified using the Amsterdam criteria. Familial clustering of CRC and extracolonic cancers were investigated in families. Individuals at risk were offered annual colonoscopy, starting from the age of 25 years. Twelve HNPCC families were identified. There were 46 cases of CRC in 38 patients. The mean age at diagnosis of CRC was 45.4 +/- 12.7 years (range 25-73 years). In patients with documented disease, right-sided tumors predominated. Eleven patients with extracolonic cancer were identified (six tumors located in the endometrium). Of 43 at-risk individuals, 29 accepted surveillance. Our data confirm the importance of the family history in identifying HNPCC. This study confirms previously described characteristics in HNPCC, namely, early age at onset of CRC, right-sided predominance, multiple synchronous and metachronous neoplasms, and increased extracolonic cancers. This is the first study of clinical data in a Spanish HNPCC registry.

  1. Design characteristics of the Corrona Japan rheumatoid arthritis registry.

    Science.gov (United States)

    Yamanaka, Hisashi; Kishimoto, Mitsumasa; Pappas, Dimitrios A; Greenberg, Jeffrey D; Kremer, Joel M; Tanaka, Yoshiya

    2018-01-01

    The primary objective is to prospectively study the comparative safety and effectiveness of older and newer classes of nonbiologic DMARDs (Disease-modifying antirheumatic drugs), biologic DMARDs and targeted synthetic therapies approved for rheumatoid arthritis (RA) in a real-world patient population in Japan. Prospective, multicenter, noninterventional, observational study across geographic distribution of both private and public institutions for patients with RA who are newly prescribed one of the following medications: (1) methotrexate; (2) anti-TNF biologic DMARDs; (3) non-TNF biologic DMARDs; and (4) approved JAK inhibitors at the time of enrollment into the registry. Target enrollment is currently 2000 subjects. Baseline and follow-up data on patient demographics, medical history, disease activity, laboratory results, comorbidities, hospitalizations, and targeted safety events are obtained via Physician and Patient Questionnaires. Fifty sites are anticipated to participate with 40 sites ethics committee (EC) approved at the time of submission consisting of 23% clinics, 21% private academic hospitals, 29% private mid-sized to large hospitals, 15% national academic hospitals, and 12% national hospitals. The Corrona Japan RA Registry will provide real-world evidence from both private and public institutions on the comparative effectiveness and safety of recently approved RA therapies in Japan.

  2. Towards data integration automation for the French rare disease registry.

    Science.gov (United States)

    Maaroufi, Meriem; Choquet, Rémy; Landais, Paul; Jaulent, Marie-Christine

    2015-01-01

    Building a medical registry upon an existing infrastructure and rooted practices is not an easy task. It is the case for the BNDMR project, the French rare disease registry, that aims to collect administrative and medical data of rare disease patients seen in different hospitals. To avoid duplicating data entry for health professionals, the project plans to deploy connectors with the existing systems to automatically retrieve data. Given the data heterogeneity and the large number of source systems, the automation of connectors creation is required. In this context, we propose a methodology that optimizes the use of existing alignment approaches in the data integration processes. The generated mappings are formalized in exploitable mapping expressions. Following this methodology, a process has been experimented on specific data types of a source system: Boolean and predefined lists. As a result, effectiveness of the used alignment approach has been enhanced and more good mappings have been detected. Nonetheless, further improvements could be done to deal with the semantic issue and process other data types.

  3. Toxic substances registry system: Index of material safety data sheets

    Science.gov (United States)

    1993-01-01

    The Material Safety Data Sheets (MSDS's) listed in this index reflect product inventories and associated MSDS's which were submitted to the Toxic Substances Registry database maintained by the Base Operations Contractor at the Kennedy Space Center. The purpose of this index is to provide KSC government, contractor, and tenant organizations a means to access information on the hazards associated with these chemicals. The Toxic Substance Registry Service (TSRS) was established to manage information dealing with the storage and use of toxic and otherwise hazardous materials at KSC. As a part of this service, the BOC Environmental Health Services maintains a central repository of MSDS's which were provided to TSRS. The data on the TSRS are obtained from NASA, contractor, and tenant organizations who use or store hazardous materials at KSC. It is the responsibility of these organizations to conduct inventories, obtain MSDS's, distribute Hazard Communication information to their employees, and otherwise implement compliance with appropriate Federal, State, and NASA Hazard Communication and Worker Right-to-Know regulations and policies.

  4. Breast cancer survival rate according to data of cancer registry and death registry systems in Bushehr province, 2001-2013

    Directory of Open Access Journals (Sweden)

    Zahra Rampisheh

    2015-09-01

    Full Text Available Background: Breast cancer is the most common female cancer worldwide. Survival rate of breast cancer, especially as an indicator of the successful implementation of screening, diagnosis and treatment programs, has been at the center of attention of public health experts Material and Methods: In a survival study, the records of breast cancer cases in cancer registry system of Bushehr Province were extracted during 2001, March to 2013, September. These records were linked and matched with records of death registry system. After determining patients, status regarding being alive or dead, survival analysis was done. Life table, Kaplan-Mayer analysis, log rank and Breslow tests were used for computing and comparing survival rates. Results: In 300 recorded breast cancer cases, mean and standard deviation of age was 51.26±13.87. Survival rates were 95, 88, 78, 73 and 68 percent since the first year through the fifth year, respectively. Mean survival was 87.20 months (95% CI= 81.28- 93.12. There was no significant difference in mean survival regarding age and different geographical areas. Conclusion: Although survival rates of registered breast cancer patients in Bushehr Province are similar to other provinces, they are far from those of developed countries. This situation demands more extensive efforts regarding public education and improving the process of diagnosis, treatment and care of patients especially during first two years after diagnosis.

  5. Cancer incidence and mortality in Mongolia - National Registry Data.

    Science.gov (United States)

    Sandagdorj, Tuvshingerel; Sanjaajamts, Erdenechimeg; Tudev, Undarmaa; Oyunchimeg, Dondov; Ochir, Chimedsuren; Roder, David

    2010-01-01

    The National Cancer Registry of Mongolia began as a hospital-based registry in the early 1960s but then evolved to have a population-wide role. The Registry provides the only cancer data available from Mongolia for international comparison. The descriptive data presented in this report are the first to be submitted on cancer incidence in Mongolia to a peer-reviewed journal. The purpose was to describe cancer incidence and mortality for all invasive cancers collectively, individual primary sites, and particularly leading sites, and consider cancer control opportunities. This study includes data on new cancer cases registered in Mongolia in 2003-2007. Incidence and mortality rates were calculated as mean annual numbers per 100,000 residents. Age-standardized incidence (ASR) and age-standardized mortality (ASMR) rates were calculated from age-specific rates by weighting directly to the World Population standard. Between 2003 and 2007, 17,271 new cases of invasive cancer were recorded (52.2% in males, 47.7% in females). The five leading primary sites in males were liver, stomach, lung, esophagus, and colon/rectum; whereas in females they were liver, cervix, stomach, esophagus and breast. ASRs were lower in females than males for cancers of the liver at 63.0 and 99.1 per 100,000 respectively; cancers of the stomach at 19.1 and 42.1 per 100,000 respectively; and cancers of the lung at 8.3 and 33.2 per 100,000 respectively. Liver cancer was the most common cause of death in each gender, the ASMR being lower for females than males at 60.6 compared with 94.8 per 100,000. In females the next most common sites of cancer death were the stomach and esophagus, whereas in males, they were the stomach and lung. Available data indicate that ASRs of all cancers collectively have increased over the last 20 years. Rates are highest for liver cancer, at about four times the world average. The most common cancers are those with a primary site of liver, stomach and esophagus, for which

  6. Biliary atresia: lessons learned from the voluntary German registry.

    Science.gov (United States)

    Leonhardt, J; Kuebler, J F; Leute, P J; Turowski, C; Becker, T; Pfister, E-D; Ure, B; Petersen, C

    2011-03-01

    Aim of the study was to carry out a 5-year survey of German patients with biliary atresia (BA) and to launch a discussion regarding the feasibility of voluntary registries in unregulated healthcare systems. A retrospective analysis of German BA patients born between 2001 and 2005, based on data collected from the voluntary European Biliary Atresia Registry (EBAR), was carried out and supplemented by data from all BA patients who underwent liver transplantation at the only 4 pediatric transplantation centers (pLTx) in Germany which are so far not registered at EBAR. Survival rates were calculated using Kaplan-Meier analysis and compared by Cox regression to determine the predictive value of age at surgery and the influence of the center size (fewer or more than 5 patients/study period) on overall survival and survival with native liver. A critical review of the 148 German EBAR charts revealed that 11 patients (7.4%) had no biliary atresia. The remaining 137 patients from EBAR together with 46 BA patients who underwent LTx without prior registration at EBAR were evaluated with a median follow-up of 39 months (range: 25-85 months). 29 hospitals performed a total of 159 Kasai procedures, but only 7 centers treated 5 or more patients (116 patients, range: 5-68), and 22 hospitals performed less than 5 KP (43 patients, range: 1-4). Primary LTx was performed in 21 patients (11.5%) and 3 patients died without surgical intervention. 16 patients were lost to follow-up (8.7%). Overall survival after 2 years was 83.3% (139 patients), including 105 patients (63%) who had undergone LTx and 34 patients (20.3%) with native liver. 28 patients died (16.7%), 8 after LTx (5.8%). The experience of the center was the only factor with a significant predictive value for jaundice-free survival with native liver (p=0.001). 25% of all German BA patients were not registered at EBAR, and 29 clinics were involved in the surgical management of BA patients. Therefore a new approach consisting of

  7. RItA: The Italian severe/uncontrolled asthma registry.

    Science.gov (United States)

    Maio, S; Baldacci, S; Bresciani, M; Simoni, M; Latorre, M; Murgia, N; Spinozzi, F; Braschi, M; Antonicelli, L; Brunetto, B; Iacovacci, P; Roazzi, P; Pini, C; Pata, M; La Grasta, L; Paggiaro, P; Viegi, G

    2018-03-01

    The Italian severe/uncontrolled asthma (SUA) web-based registry encompasses demographic, clinical, functional, and inflammatory data; it aims to raise SUA awareness, identifying specific phenotypes and promoting optimal care. Four hundred and ninety three adult patients from 27 Italian centers (recruited in 2011-2014) were analyzed. Mean age was 53.8 years. SUA patients were more frequently female (60.6%), with allergic asthma (83.1%). About 30% showed late onset of asthma diagnosis/symptoms (>40 years); the mean age for asthma symptoms onset was 30.2 years and for asthma diagnosis 34.4 years. 97.1% used ICS (dose 2000 BDP), 93.6% LABA in association with ICS, 53.3% LTRAs, 64.1% anti-IgE, 10.7% theophylline, and 16.0% oral corticosteroids. Mean FEV 1 % pred of 75.1%, median values of 300/mm 3 of blood eosinophil count, 323 kU/L of serum total IgE, and 24 ppb of FENO were shown. Most common comorbidities were allergic rhinitis (62.4%), gastroesophageal reflux (42.1%), sinusitis (37.9%), nasal polyposis (30.2%), and allergic conjunctivitis (30.2%). 55.7% of SUA patients had exacerbations in the last 12 months, 9.7% emergency department visits, and 7.3% hospitalizations. Factors associated with exacerbation risk were obesity (OR, 95% CI 2.46, 1.11-5.41), psychic disorders (2.87, 0.89-9.30-borderline), nasal polyps (1.86, 0.88-3.89-borderline), partial/poor asthma treatment adherence (2.54, 0.97-6.67-borderline), and anti-IgE use in a protective way (0.26, 0.12-0.53). Comparisons to severe asthma multicenter studies and available registries showed data consistency across European and American populations. An international effort in the implementation of SUA patients' registries could help to better understand the clinical features and to manage severe asthma, representing a non-negligible socioeconomic burden for health services. © 2017 EAACI and John Wiley and Sons A/S. Published by John Wiley and Sons Ltd.

  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 Spanish National Dose Registry and Spanish radiation passbooks

    International Nuclear Information System (INIS)

    Hernandez, A.; Martin, A.; Villanueva, I.; Amor, I.; Butragueno, J.L.

    2001-01-01

    The Spanish National Dose Registry (BDN) is the Nuclear Safety Council's (CSN) national database of occupational exposure to radiation. Each month BDN receives records of individual external doses from approved dosimetry services. The dose records include information regarding the occupational activities of exposed workers. The dose information and the statistical analysis prepared by the BDN are a useful tool for effective operational protection of occupationally exposed workers and a support for the CSN in the development and application of the ALARA principle. The Spanish radiation passbook was introduced in 1990 and since then CSN, as regulatory authority, has required that all outside workers entering controlled areas should have radiation passbooks. Nowadays, CSN has implemented improvements in the Spanish radiation Passbooks, taking into account previous experience and Directive 96/29/EURATOM. (author)

  10. The National Kidney Registry: 175 transplants in one year.

    Science.gov (United States)

    Veale, Jeffrey; Hil, Garet

    2011-01-01

    Since organizing its first swap in 2008, the National Kidney Registry had facilitated 389 kidney transplants by the end of 2011 across 45 U.S. transplant centers. Rapid innovations, advanced computer technologies, and an evolving understanding of the processes at participating transplant centers and histocompatibility laboratories are among the factors driving the success of the NKR. Virtual cross match accuracy has improved from 43% to 94% as a result of improvements in the HLA typing process for donor antigens and enhanced mechanisms to list unacceptable HLA antigens for sensitized patients. By the end of 2011, the NKR had transplanted 66% of the patients enrolled since 2008. The 2011 wait time (from enrollment to transplant) for the 175 patients transplanted that year averaged 5 months.

  11. Some Considerations on the Adoption Registration in the Civil Registry

    Directory of Open Access Journals (Sweden)

    Gabriela LUPŞAN

    2014-12-01

    Full Text Available Filiation is, in a broad sense, an identity element, dependent or not on the biological relationships, that represents, in some situations, either a condition for the existence of a right (e.g. the right to inheritance or for example to conclude a legal act (e.g. marriage. The proof of filiation is the birth certificate drawn up in civil registry or on the material basis of birth, or on the basis of the adoption judgment. In this paper, we aimed at analyzing the final part of the adoption procedure, the subsequent stage for becoming final the adoption judgment, which sets face to face the adopting person or family and the administrative authority, obliged to execute the judge's decision, i.e. to create a filiation relation between the adopted on the one hand and the adoptive parent or parents.

  12. Vision for a Global Registry of Anticipated Public Health Studies

    Science.gov (United States)

    Choi, Bernard C.K.; Frank, John; Mindell, Jennifer S.; Orlova, Anna; Lin, Vivian; Vaillancourt, Alain D.M.G.; Puska, Pekka; Pang, Tikki; Skinner, Harvey A.; Marsh, Marsha; Mokdad, Ali H.; Yu, Shun-Zhang; Lindner, M. Cristina; Sherman, Gregory; Barreto, Sandhi M.; Green, Lawrence W.; Svenson, Lawrence W.; Sainsbury, Peter; Yan, Yongping; Zhang, Zuo-Feng; Zevallos, Juan C.; Ho, Suzanne C.; de Salazar, Ligia M.

    2007-01-01

    In public health, the generation, management, and transfer of knowledge all need major improvement. Problems in generating knowledge include an imbalance in research funding, publication bias, unnecessary studies, adherence to fashion, and undue interest in novel and immediate issues. Impaired generation of knowledge, combined with a dated and inadequate process for managing knowledge and an inefficient system for transferring knowledge, mean a distorted body of evidence available for decisionmaking in public health. This article hopes to stimulate discussion by proposing a Global Registry of Anticipated Public Health Studies. This prospective, comprehensive system for tracking research in public health could help enhance collaboration and improve efficiency. Practical problems must be discussed before such a vision can be further developed. PMID:17413073

  13. Treatment of autoinflammatory diseases: results from the Eurofever Registry and a literature review

    NARCIS (Netherlands)

    Haar, N. Ter; Lachmann, H.; Ozen, S.; Woo, P.; Uziel, Y.; Modesto, C.; Kone-Paut, I.; Cantarini, L.; Insalaco, A.; Neven, B.; Hofer, M.; Rigante, D.; Al-Mayouf, S.; Touitou, I.; Gallizzi, R.; Papadopoulou-Alataki, E.; Martino, S.; Kuemmerle-Deschner, J.; Obici, L.; Iagaru, N.; Simon, A.; Nielsen, S.; Martini, A.; Ruperto, N.; Gattorno, M.; Frenkel, J.; et al.,

    2013-01-01

    OBJECTIVE: To evaluate the response to treatment of autoinflammatory diseases from an international registry and an up-to-date literature review. METHODS: The response to treatment was studied in a web-based registry in which clinical information on anonymised patients with autoinflammatory diseases

  14. 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.

  15. High Mortality without ESCAPE: The Registry of Heart Failure Patients Receiving Pulmonary Artery Catheters without Randomization

    Science.gov (United States)

    Allen, Larry A.; Rogers, Joseph G.; Warnica, J. Wayne; DiSalvo, Thomas G.; Tasissa, Gudaye; Binanay, Cynthia; O’Connor, Christopher M.; Califf, Robert M.; Leier, Carl V.; Shah, Monica R.; Stevenson, Lynne W.

    2008-01-01

    Background In ESCAPE, there was no difference in days alive and out of the hospital for patients with decompensated heart failure (HF) randomly assigned to therapy guided by pulmonary artery catheter (PAC) plus clinical assessment versus clinical assessment alone. The external validity of these findings is debated. Methods and Results ESCAPE sites enrolled 439 patients receiving PAC without randomization in a prospective registry. Baseline characteristics, pertinent trial exclusion criteria, reasons for PAC use, hemodynamics, and complications were collected. Survival was determined from the National Death Index and the Alberta Registry. On average, registry patients had lower blood pressure, worse renal function, less neurohormonal antagonist therapy, and higher use of intravenous inotropes as compared with trial patients. Although clinical assessment anticipated less volume overload and greater hypoperfusion among the registry population, measured filling pressures were similarly elevated in the registry and trial, while measured perfusion was slightly higher among registry patients. Registry patients had longer hospitalization (13 vs. 6 days, p <0.001) and higher 6-month mortality (34% vs. 20%, p < 0.001) than trial patients. Conclusions The decision to use PAC without randomization identified a population with higher disease severity and risk of mortality. This prospective registry highlights the complex context of patient selection for randomized trials. PMID:18926438

  16. The Danish Registry on Regular Dialysis and Transplantation:completeness and validity of incident patient registration

    DEFF Research Database (Denmark)

    Hommel, Kristine; Rasmussen, Søren; Madsen, Mette

    2010-01-01

    BACKGROUND: The Danish National Registry on Regular Dialysis and Transplantation (NRDT) provides systematic information on the epidemiology and treatment of end-stage chronic kidney disease in Denmark. It is therefore of major importance that the registry is valid and complete. The aim of the pre...

  17. 78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

    Science.gov (United States)

    2013-01-09

    ... CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs... communication with our many and diverse stakeholders. To join the registry and receive messages, stakeholders... subscriptions may access the expanded registry at: https://public.govdelivery.com/accounts/USDAAPHIS/subscriber...

  18. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-06-05

    ... chemicals and fumes caused by open burn pits. DATES: Written comments and recommendations on the proposed... to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.... Title: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. OMB...

  19. 78 FR 54956 - Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-09-06

    ...: Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire, VA Form 10-10066. Type of Review... services to Open Burn Pit Registry participants and improve VA's ability to understand the health effects... DEPARTMENT OF VETERANS AFFAIRS [OMB Control No. 2900-NEW] Agency Information Collection (Open Burn...

  20. 78 FR 44625 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Science.gov (United States)

    2013-07-24

    ... DEPARTMENT OF VETERANS AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne... to ``OMB Control No. 2900--NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire... health effects of service members' exposure to toxic airborne chemicals and fumes caused by open burn...

  1. 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.

  2. An evolution of trauma care evaluation: A thesis on trauma registry and outcome prediction models

    NARCIS (Netherlands)

    Joosse, P.

    2013-01-01

    Outcome prediction models play an invaluable role in the evaluation and improvement of modern trauma care. Trauma registries underlying these outcome prediction models need to be accurate, complete and consistent. This thesis focused on the opportunities and limitations of trauma registries and

  3. 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...

  4. Classification of Topographical Pattern of Spasticity in Cerebral Palsy: A Registry Perspective

    Science.gov (United States)

    Reid, Susan M.; Carlin, John B.; Reddihough, Dinah S.

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological…

  5. 76 FR 72424 - Submission for OMB Review; Comment Request Information Program on the Genetic Testing Registry

    Science.gov (United States)

    2011-11-23

    ... particular tests; and (3) facilitating genetic and genomic data-sharing for research and new scientific...; Comment Request Information Program on the Genetic Testing Registry AGENCY: National Institutes of Health... currently valid OMB control number. Proposed Collection: Title: The Genetic Testing Registry; Type of...

  6. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Science.gov (United States)

    2012-04-13

    ... DEPARTMENT OF AGRICULTURE Animal and Plant Health Inspection Service [Docket No. APHIS-2012-0013] Notice of Establishment of a Veterinary Services Stakeholder Registry AGENCY: Animal and Plant Health... a Veterinary Services (VS) Stakeholder Registry, an email subscription service for individuals and...

  7. Renal replacement therapy registries--time for a structured data quality evaluation programme

    NARCIS (Netherlands)

    Couchoud, Cécile; Lassalle, Mathilde; Cornet, Ronald; Jager, Kitty J.

    2013-01-01

    Registries in the area of renal replacement therapy (RRT) are intended to be a tool for epidemiological research, health care planning and improvement of quality of care. In this perspective, the value of a population-based RRT registry and its ability to achieve its goals rely heavily on the

  8. Idiopathic versus secondary venous thromboembolism. Findings of the RIETE registry.

    Science.gov (United States)

    Pedrajas, J M; Garmendia, C; Portillo, J; Gabriel, F; Mainez, C; Yera, C; Monreal, M

    2014-10-01

    The Computerized Registry of Patients with Venous Thromboembolism (RIETE) is a prospective registry that consecutively includes patients diagnosed with venous thromboembolism. We compared the clinical presentation and response to anticoagulant treatment in patients with idiopathic venous thromboembolism (IVT) versus secondary venous thromboembolism (SVT, associated with a risk factor). We analyzed the differences in clinical characteristics, comorbidity, treatment and events during the first 3months after the diagnosis of venous thromboembolism in patients with IVT or SVT and according to their initial clinical presentation. A total of 39,921 patients with IVT (n=18,029; 45.1%) or SVT (n=21,892; 54.9%) were enrolled. The patients with IVT had a greater history of venous thromboembolism than those diagnosed with SVT (p<.001). The initial treatment was similar for the 2 groups, but more inferior vena cava filters were placed in the SVT group (p<.001). In the long term, low-molecular-weight heparin was used more often in the SVT group than in the IVT group. At 90days, bleeding, death and the recurrence of venous thromboembolism were significantly more frequent in the SVT group. The multivariate analysis confirmed that IVT was associated with fewer major (OR, 0.60; 95%CI, 0.50-0.61; p<.001) and fatal (OR, 0.41; 95%CI, 0.29-0.62; p<.001) bleedings, fewer relapses (OR, 0.58; 95%CI, 0.39-0.78; p<.001) and fewer fatal pulmonary embolisms (OR, 0.29; 95%CI, 0.12-0.52; p<.001). These differences were maintained in patients whose venous thromboembolism started with a pulmonary embolism or with deep vein thrombosis. IVT has a better prognosis than SVT at 90days of the diagnosis. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

  9. Daptomycin experience in critical care patients: results from a registry.

    Science.gov (United States)

    Brown, Jack E; Fominaya, Cory; Christensen, Keith J; McConnell, Scott A; Lamp, Kenneth C

    2012-04-01

    Vancomycin is often the drug of choice in critically ill patients with gram-positive infections, although circumstances often prevent its use. In these situations, clinicians are frequently left with limited data regarding alternative agents. To describe patients with reported sepsis receiving daptomycin in a critical care unit. This multicenter, noncomparative, noninterventional study identified patients in critical care units, using the Cubicin Outcomes Registry and Experience (CORE) 2005-2009 registry. A descriptive account of patient characteristics, infectious etiology, outcomes at the end of daptomycin therapy, and 30-day mortality is reported. Nonevaluable patients were excluded from the efficacy analysis but included in the safety analysis. We identified 128 patients, 98 (77%) of whom were evaluable for efficacy. Patient characteristics for the efficacy population were 55 (56%) males, 30 (31%) aged 66 years or older, 38 (39%) had creatinine clearance less than 30 mL/min, and 27 (28%) were on dialysis. Common underlying diseases included acute or chronic renal failure 44 (45%), hypertension 40 (41%), and diabetes 27 (28%). Seventy-two (73%) patients were bacteremic. The most common pathogens found were methicillin-resistant Staphylococcus aureus (32%), vancomycin-resistant Enterococcus faecium (21%), and coagulase-negative staphylococci (20%). Prior to daptomycin, antibiotics were used in 84 (86%) patients, most commonly vancomycin (65/84; 77%). The median (range) initial daptomycin dose was 6 mg/kg (3-10) and duration of 10 days (1-58). Overall success rate was 70% (31% cured; 39% improved). Twelve adverse events possibly related to daptomycin were reported in 9 of 128 (7%) patients in the safety population; 4 of these in 4 (3%) patients were serious. The mortality rate within 30 days of completing daptomycin was 42 of 128 (33%) patients. These data provide preliminary results on the use of daptomycin in critically ill patients with complicated conditions

  10. 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

  11. [Monitoring of pregnancies exposed to drugs in France: the experience of the registries of congenital malformations].

    Science.gov (United States)

    Doray, Bérénice

    2014-01-01

    Registries of congenital malformations were implemented in many industrialized countries following the drama of thalidomide. In 2013, four French registries of congenital malformations in France provide the systematic epidemiological surveillance of birth defects. All are part of international networks of registries, especially European surveillance of congenital anomalies (EUROCAT). If the development of prevention actions including prenatal diagnosis has gradually led the registries to play a key role of assessment on the impact of public health policies, one of the major roles of registries of congenital malformations remains early detection of clusters of malformations secondary to teratogenic effects. © 2014 Société Française de Pharmacologie et de Thérapeutique.

  12. Promoting Organ Donor Registries Through Public Education: What Is the Cost of Securing Organ Donors?

    Science.gov (United States)

    Razdan, Manik; Smith, Kenneth J; Bryce, Cindy L; Degenholtz, Howard B

    2016-06-01

    Transplant medicine's impact on America's public health is seriously limited by acute shortage of transplantable organs. Consequently, the United Sates has witnessed considerable investment in the promotion of organ donor registries. Although there is no evidence to support that donor registry promotion alleviates organ shortage, this belief continues to drive investments into registry promotion. In this study, return on investment in donor registry promotion was examined using cost-outcomes analysis. Cost of promoting the donor registry was estimated in US dollars whereas the outcome was measured as the number of individuals who join the registry (registrants) and their value in terms of organ donors. The study was conducted from the perspective of a regional Organ Procurement Organization (OPO). Costs were directly obtained from the OPO. The number of new registrants was obtained from the OPO and the departments of motor vehicles that maintain the donor registry. The value of registrants in terms of organ donors was computed based on a registrant's age-dependent risk of dying and age-dependent probability of becoming an organ donor. Six thousand seven hundred eight individuals joined the organ donor registry (95% confidence interval [95% CI], 5429-7956) at a cost of $455 per registrant (95% CI, US $383-US $562). These individuals result in 4.2 present-day donors (95% CI, 2.5-6.6) at a cost of US $726 000 (95% CI, US $462000-US $1.2 million). Because the cost per registrant and cost per donor is less than society's willingness to pay, donor registry promotion offers positive return on investment. Investment in registry promotion should at the minimum be maintained at current levels.

  13. National nephrectomy registries: Reviewing the need for population-based data.

    Science.gov (United States)

    Pearson, John; Williamson, Timothy; Ischia, Joseph; Bolton, Damien M; Frydenberg, Mark; Lawrentschuk, Nathan

    2015-09-01

    Nephrectomy is the cornerstone therapy for renal cell carcinoma (RCC) and continued refinement of the procedure through research may enhance patient outcomes. A national nephrectomy registry may provide the key information needed to assess the procedure at a national level. The aim of this study was to review nephrectomy data available at a population-based level in Australia and to benchmark these data against data from the rest of the world as an examination of the national nephrectomy registry model. A PubMed search identified records pertaining to RCC nephrectomy in Australia. A similar search identified records relating to established nephrectomy registries internationally and other surgical registries of clinical importance. These records were reviewed to address the stated aims of this article. Population-based data within Australia for nephrectomy were lacking. Key issues identified were the difficulty in benchmarking outcomes and no ongoing monitoring of trends. The care centralization debate, which questions whether small-volume centers provide comparable outcomes to high-volume centers, is ongoing. Patterns of adherence and the effectiveness of existing protocols are uncertain. A review of established international registries demonstrated that the registry model can effectively address issues comparable to those identified in the Australian literature. A national nephrectomy registry could address deficiencies identified in a given nation's nephrectomy field. The model is supported by evidence from international examples and will provide the population-based data needed for studies. Scope exists for possible integration with other registries to develop a more encompassing urological or surgical registry. Need remains for further exploration of the feasibility and practicalities of initiating such a registry including a minimum data set, outcome indicators, and auditing of data.

  14. [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.

  15. Demographic, clinical and antibody characteristics of patients with digital ulcers in systemic sclerosis: data from the DUO Registry

    NARCIS (Netherlands)

    Denton, Christopher P.; Krieg, Thomas; Guillevin, Loic; Schwierin, Barbara; Rosenberg, Daniel; Silkey, Mariabeth; Zultak, Maurice; Matucci-Cerinic, Marco; Stetter, M.; Lackner, K.; Tomi, N.; Hafner, F.; Brodmann, M.; Kuen-Spiegel, M.; Kolle, H.; Raffier, B.; Hamberger, N.; Metz, S.; Siebel, C.; Trummer, M.; Thonhofer, R.; Illmer, X.; Trautinger, F.; Schmidt, P.; Rintelen, B.; Sautner, J.; Willfort-Ehringer, A.; Margeta, C.; Monshi, B.; Pirkhammer, D.; Richter, L.; Holzer, G.; Minmair, G.; Broll, H.; Takacs, M.; Hirschl, M.; Mesaric, P.; Feldmann, R.; Semmelweis, K.; Hundstorfer, M.; Reinhart, V.; Maurer, B.; Verner, D.; Distler, O.; Schmidt-Bosshard, R.; Bohmova, J.; Prochazkova, L.; Nemec, P.; Fojtik, Z.; Soukup, T.; Smrzova, A.; Suchy, D.; Zemanova, I.; Becvar, R.; Gawlik, A.; Koch, M.; Rauen, T.; Voss, B.; Kurthen, R.; Unholzer, A.; Starz, H.; Welzel, J.; Plaumann, K.; Merk, B.; Bloching, H. H.; Moosig, F.; Frey, P.; Kahl, S.; Schleenbecker, H.; Storck-Mueller, K.; Schwarting, A.; Hazenbiller, A.; Nichelmann, V.; Flaig, W.; Rumbaur, C.; Boesenberg, I.; Schmeiser, T.; Marx, J.; Mayer, L.; Stein, T.; Ochs, W.; Rasche, C.; Worm, M.; Riemekasten, G.; Deuschle, K.; Becker, M.; Kleiner, H. J.; Schulze, K.; Tiggers, C.; Peters, J.; Kirschke, J.; Schaefer, C.; Monshausen, M.; Mengden, T.; Sadeghlar, F.; Seidel, M.; Hillebrecht, C.; Andresen, J.; Reemtsen, R.; Stoeckl, F.; Sperling, S.; Podda, M.; Wagner, N.; Guenzel, J.; Wuerzburg, I.; Luethke, K.; Enderlein, M.; Kayser, M.; Gerber, A.; Haust, M.; Hoff, N. P.; Mota, R.; Akanay-Diesel, S.; Jahnke, K.; Mettler, S.; Toeller, S.; Zwenger, S.; Klein, E.; Hahn, K.; Beyer, C.; Distler, J.; Katzemich, A.; Erfurt-berge, C.; Sticherling, M.; Schuch, F.; Rapp, P.; Mitchell, A.; Freundlieb, C.; Rushentsova, U.; Himsel, A.; Henkemeier, U.; Eilbacher, P.; Ullrich-Guenther, C.; Neul, S.; Oelsner, M.; Hermanns, G.; Fiene, M.; Gause, A.; Mensing, C.; Klings, D.; Mensing, H.; Messall, J.; Zuper, R.; May, D.; Bruckner, L.; Sheikh, N.; Aries, P.; Kirchberg, S.; Funkert, A.; Blank, N.; Lupaschko, S.; Schwuerzer-Voit, M.; Meier, L.; Herr, U.; Meier, U.; Neek, G.; Wernitzsch, H.; Pfoehler, C.; Assmann, G.; Vosswinkel, J.; Krog, B.; Wollersdorfer, E.; Oltmann-Schroeder, J.; Zeuner, R.; Uhlig, S.; Barth, S.; Huegel, R.; Glaeser, R.; Rabe, B.; Schuster, J.; Scholz, J.; Kremer, K.; Robakidze-Torbahn, M.; Moinzadeh, P.; Mittag, M.; Dohse, A.; Muhlack, A.; Schultz, L.; Schult, S.; Frambach, Y.; Kettenbach, A.; Fell, I.; Schweda, K.; Steinbrink, K.; Podobinska, M.; Harmuth, W.; Nielen, C.; Kaczmarczyk, A.; Kellner, C.; von Oelhafen, J.; von Bildering, P. B.; Kunze, S.; Niedermeier, A.; Messer, G.; Sardy, M.; Bekou, V.; Belloni, B.; Huettig, B.; Ziai, M.; Hein, R.; Hallecker, A.; Gaubitz, M.; Hallermann, C.; Schmidt, K.; Herrgott, I.; Hildebrandt, B.; Eiden, E.; Guertler, I.; Gernot Scheibl, E.; Brand, H.; Kaeding, U.; Weiss, E.; Reischel, N.; Kern, S.; Baumann, C.; Hellmich, B.; Loeffler, C.; Pflugfelder, J.; Karaenke, P.; Ruchenburg, J.; Blume, J.; Zabel, M.; Deppermann, N.; Chromik, S.; Metzler, C.; Krupp, E.; Rumpel, H.; Krause Rostock, J.-O.; Kneitz, C.; Federow, I.; Schneider, K.; Semmler, M.; Hapke, S.; Barnd, A.; Linke, M.; Kampe-Juzak, E.; Knoebel, K.; Niefanger, K.; Wilhelm, H. U.; Lauterwein, B.; Fierlbeck, G.; Schanz, S.; Pfeiffer, C.; Hassel, R.; Wahn, H.; Schildt, K.; von Elling, A.; Boro, D.; Ebel, J.; Ahmadi, K.; Moritz, D.; Dietl, S.; Dyballa, J.; Alsheimer, B.; Schuetz, N.; Schuart, T.; Mueglich, C.; Tony, H. P.; Marina, P.; Deininger, F.; Hartmann, F.; Olsen, A. B.; Sondergaard, K. H.; Naderi, Y.; Iversen, L. V.; Karlsmark, T.; Knudsen, J. B.; Gil, J. G.; Lopez, J. C. F.; Tasende, J. A. P.; Gonzales, M. F.; Sandoval, A. A.; del Carmen Torres Martin, M.; Corteguera, M.; Barca, B. A.; Montes, I. C.; de la Torre, R. G.; Victoria Egurbide, M.; Pros, A.; Munoz, J.; Simeon, C. P.; Espinosa, G.; Espinposa, G.; Rodriguez, M. A. P.; Castellvi, I.; Mascaro, J. M.; Bellido, D.; Manzanedo, V. S.; Huertas, M. P.; Sanchez, M. D. M.; Trenado, M. S. S.; Garcia, P. V.; Gines Martinez, F.; Angeles Aquirre, M.; del Rio, A. H.; Vazquez, J. L. G.; Coleman, J. V.; Lopez, M. R.; Sanchez, P. S.; Aizpuru, E. M. F.; Mateo, F. J. N.; Callejas, J. L.; Ortego, N.; Santo, M. P.; Rubio, M.; Martin, I.; Cruz, A.; Crespo, M.; Ramos, P. C.; Fernandez, A. S.-A.; Filloy, J. A. M.; Rodriguez, T. R. V.; Marhuenda, A. R.; Blanco, J. J. R.; Hernan, M. G. B.; Mendoza, A. Z.; de la Puente, C.; Rabaneda, E. V.; de Vicuna, R. G.; del Mar Ripoll Macias, M.; del la Pena Lefebvre, P. G.; de Ramon, E.; Camps, M. T.; Fernandez, C.; Miguelez, R.; Uson, J.; Delgado, E. G.; Villaverde, V.; Maceiras, F.; Cruz, J.; Mosquera, J. A.; Mera, A.; Pampin, E. P.; Blanco, J. S.; Maneiro, J. R.; Diaz, J. J.; Losada, L.; Caamano, M.; Fernandez, S.; Insua, S. A.; Laurin, C. U.; Sanchez, J.; Fernandez, N. C.; Becerra, N. D.; Garcia, A.; Nicolas, G. M.; del Carmen Ortega de la O, M.; Rueda, A.; Calvo, J.; Roman Ivorra, J.; Sancho Alegre, J. J.; Barbado, J.; Montes, J.; Saez, L.; Kaarto, A.; Makinen, H.; Madaule, S.; Dadban, A.; Lok, C.; Ferrandiz, D.; Moiton, M. P.; Magy-Bertrand, N.; Taieb, A.; Droitcourt, C.; Belin, E.; Balquiere, S.; Prey, S.; Boulon, C.; Constans, J.; Richez, C.; Sassolas, B.; Misery, L.; Greco, M.; collet, E.; Berthier, S.; Leguy-Seguin, V.; Imbert, B.; Carpentier, P.; Blaise, S.; Maillard, H.; Beneton, N.; Launay, D.; Hachulla, E.; Woijtasik, G.; Charlanne, H.; Lambert, M.; Jourdain, N.; Hatron, P. Y.; Morell, S.; Spars, A.; Couraud, A.; Doeffel-hantz, V.; Fauchais, A. L.; Vidal, E.; Goudran, G.; Bezanahary, H.; Boussely, N.; Manea, P.; Dumonteil, S.; Loustaud-ratti, V.; Hot, A.; Coppere, B.; Desmurs-Clavel, H.; Ninet, J.; Girard-Madoux, M. H.; Granel, B.; Keynote, A.; Khau van Kien, A.; Rullier, P.; Le Quellec, A.; Riviere, S.; Bessis, D.; Cohen, J. D.; Farcas, C.; Granel-brocard, F.; Agard, C.; Durant, C.; Fuzibet, J. G.; Queyrel, V.; Berezne, A.; Guillevin, L.; Mouthon, L.; Frances, C.; Toledano, C.; Cabane, J.; Tiev, K.; Farge, D.; Keshtmand, H.; Lazareth, I.; Priollet, P.; Michon-Pasturel, U.; Wipff, J.; Assous, N.; Cartry, O.; Kostrzwewa, E.; Doutre, M. S.; Blum, L.; Reguiai, Z.; Letremy, A.; Perlat, A.; Cazalets-lacoste, C.; Decaux, O.; Jego, P.; Duval-modeste, A. B.; Deboves, O.; Sordet, C.; Chatelus, E.; Chiffot, H.; Sibillia, J.; Couret, B.; Moulis, G.; Sailler, L.; Adoue, D.; Gaches, F.; Diot, E.; Skowron, F.; Zenone, T.; Quemeneur, T.; Kyndt, X.; Wahl, D.; Zuily, S.; Moline, T.; Bravetti, V.; Galanopoulos, N.; Vasilopoulos, D.; Vlachoyannopoulos, P.; Kritikos, I.; Tsifetaki, N.; Koutroumbas, A.; Garyfallos, A.; Athanassiou, P.; Aslanidis, S.; Kamali, S.; Dimitroulas, T.; Galanopoulo, V.; Elezoglou, A.; Grier, A.; Murray, M.; O'Rourke, M.; Gabrielli, A.; Lapadula, G.; Serafino, L.; Terlizzi, N.; Bellissimo, S.; Stisi, S.; Malavolta, N.; Airo, P.; Vacca, A.; Battaglia, E.; Foti, R.; Mazzuca, S.; Bortoluzzi, A.; Trotta, F.; Galluccio, F.; Marucci, A.; Cantatore, F.; Bucci, R.; Puppo, F.; de Angeli, R.; Grassi, W.; Cipriani, P.; Mazzone, A.; Faggioli, P.; Severino, A.; Scorza, R.; Belloli, L.; Ughi, N.; Antivalle, M.; del Papa, N.; Maglione, W.; Zeni, S.; Ferri, C.; Colaci, M.; Varcasia, G.; Cuomo, G.; Cozzi, F.; Triolo, G.; Gatti, S.; Montecucco, C. M.; Doveri, M.; Nigro, A.; Olivieri, I.; Bajoochi, G.; Rosato, E.; Salsano, F.; Faustini, F.; Ferraccioli, G.; Colonna, L.; Pallotta, S.; Riccieri, V.; Mussi, A.; Bellisai, F.; Galeazzi, M.; Fusaro, E.; Saracco, M.; Pellerito, R.; Masolini, P.; de Vita, S.; Lombardi, S.; Lunardi, C.; Moolenburgh, J. D.; Heurkens, A. H. M.; Voskuyl, A.; Hak, A. E.; Stroes, E. S. K.; Remans, J.; Gerdes, V.; van Woerkom, J. M.; de Long, A. J. L.; Kaasjager, H. A. H.; Visser, H.; Janssen, M.; van Guldener, C.; van Neer, F.; Vos, P.; Peters, A. J.; Hulsmans, H.; Ronday, K.; Goekoop, R.; Ewals, J.; Valentijn, R.; de Bois, M.; Westedt, M. L.; Siewertsz van Reesema, D.; Knifjj-Dutmer, E.; Stolk, J. N.; Willems, H.; Kuiper-geertsma, D. G.; Baudaoin, P.; Fretter, P.; Westra, R.; Sonnaville, P. B. J.; Smit, A.; Bootsma, H.; Brouwer, L.; Bijl, M.; Molders, N.; Lebrun, C.; van der Veen, M. J.; Noordzij, M.; Houben, H.; Landewe, R. M. B.; Vercoutere, W.; Jahangier de Veen, Z. N.; Zijlstra, T. R.; Ubels, F.; Bruyn, G.; Jansen, P.; Schuerwegh, A.; Huizinga, T. W. J.; Paassen, P.; Hurkens, T.; Geurts, M.; van den Hoogen, F.; Vonk, M.; Jacobs, P. J. C.; Groenendael, J. H. L. M.; Seys, P.; van Zeben, D.; van Paassen, H.; Groenendael, J.; Han, K. H.; Wlarvens, M.; van Hagen, M.; van Daele, P.; Dolhain, R.; Gerards, A. H.; van der Lubbe, P.; Kanter, M. D. E.; Muller, W. H.; Ton, E.; van Krugten, M.; van Gameren, I.; Lanting, P.; den Hengst, C.; Gjessdal, C. G.; Hjertaker, S. L.; Madland, T. M.; Bendvold, A.; Bitter, H.; Hoffmann-Vold, A. M.; Midtvedt, O.; Bakland, G.; Aslkaksen, H. K.; Seip, M.; Kalstad, S.; Koldingsnes, W.; Grandauent, B.; Nordvag, B. Y.; Stran, E. K.; Skomsvoll, J.; Andersen, M.; Thomsen, R. S.; Pedersen, T.; Bakkeheim, V.; Cordeiro, A.; Alves, J.; Oliveira, S.; Coelho, P.; Resende, C.; Ponte, C.; Almeida, I.; Silva, I.; Santos, C.; Camara, I.; Costa, J.; Hellstrom, H.; Mohammad, A.; Lind, I.; Lind, K.; Bracin, T.; Liljequist, E.; Vingren, T.; Ostenson, A.; Hermansson, E.; Thorsson, C.; Soderlin, M.; Nordin, A.; Waldheim, E.; Vengemyr, K.; Albertsson, K.; Karlsson, M. L.; Rydvald, Y.; Rizk, M.; Dolnicar, A. S.; Lukac, J.; James, J.; McHugh, N.; Cole, S.; Brown, S.; Hamilton, A.; Faizal, A.; Hall, F.; Murphy, K.; Skingle, S.; Harris, H.; Madhok, F.; Hampson, R.; Baguley, E.; Ogunbambi G, O.; Lamb, J.; Anderson, M.; Moots, R.; White-Alao, B.; Morrison, C.; Dobson, J.; Gordon, P.; Salerno, R.; Denton, C.; Parker, L.; Ochiel, R.; Vincent, R.; Zimba, S.; Ngcozana, T.; Xu, Y.; D'Cruz, D.; Choong, L. M.; Herrick, A.; Wragg, E.; Manning, J.; Moore, T.; Kelsey, C.; Chakravarty, K.; Skyes, H.; Athiveer, P.

    2012-01-01

    The Digital Ulcers Outcome (DUO) Registry was designed to describe the clinical and antibody characteristics, disease course and outcomes of patients with digital ulcers associated with systemic sclerosis (SSc). The DUO Registry is a European, prospective, multicentre, observational, registry of SSc

  16. RHEUMATOID ARTHRITIS IN THE RUSSIAN FEDERATION ACCORDING TO RUSSIAN ARTHRITIS REGISTRY DATA (COMMUNICATION I

    Directory of Open Access Journals (Sweden)

    E. L. Nasonov

    2016-01-01

    Full Text Available The paper presents the materials of the Russian Arthritis Registry (OREL that includes 3276 patients from 11 Russian Federation's largest research-and-practical centers situated in Moscow, Saint Petersburg, Novosibirsk, Kazan, Tula, Yaroslavl, Tyumen. It discusses the main goals of setting up registries, compares the results of an analysis of the data available in the Russian Registry OREL and registries of European countries and the USA. The findings suggest that there is non-uniform information on clinical, laboratory, and instrumental parameters in the national registers of a number of European countries and the USA. According to its basic characteristics, the Russian Registry OREL compares favorably with a number of other registries in the completeness of data collection, which allows a general idea of rheumatoidarthritis (RA patients in Russia. For further development of the OREL Registry, it is necessary to concentrate our attention on the following main areas: to improve the quality of filling out documents; to follow-up patients receiving different RA therapy regimens according to the guidelines of the Association of Rheumatologists of Russia for the treatment of RA; to conduct in-depth studies of comorbidity, primarily depressive disorders; to analyze adverse reactions that make RA therapy difficult; to actively use modules for patients' self-rating of their condition; to develop nursing care, etc.

  17. 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.

  18. Primary healthcare-based diabetes registry in Puducherry: Design and methods

    Directory of Open Access Journals (Sweden)

    Subitha Lakshminarayanan

    2017-01-01

    Full Text Available Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry.

  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. [The role of drug registries in the post-marketing surveillance].

    Science.gov (United States)

    Traversa, Giuseppe; Sagliocca, Luciano; Magrini, Nicola; Venegoni, Mauro

    2013-06-01

    The aim of this article is to provide an introduction to issue of Recenti Progressi in Medicina, devoted to the role of drug registries in the post-marketing surveillance. We first motivate the need to implement registries as a tool in promoting the appropriateness of drug use and acquiring additional information on the risk-benefit profile of drugs. Then, the different role that can be played by registries in comparison with prescription monitoring systems and observational studies is clarified. The presentation of some of the most relevant registries established in Italy since the end of the '90s, with the analysis of their strengths and weaknesses, helps to understand some of the crucial issues that should be taken into account before a new registry is adopted. Specifically, we deal with the relationship between objectives - of appropriateness, effectiveness and safety - and methods; the overlapping between drug-based registries and disease-based ones; the duration and extension of data collection, which may be either exhaustive or based on a sampling frame; the importance of ensuring the quality of the data and to minimize the number of subjects who are lost to follow-up; the importance of infrastructures, and of ad hoc funding, for the functioning of a registry; the independence in data analysis and publication of findings.

  1. Nordic Cancer Registries - an overview of their procedures and data comparability.

    Science.gov (United States)

    Pukkala, Eero; Engholm, Gerda; Højsgaard Schmidt, Lise Kristine; Storm, Hans; Khan, Staffan; Lambe, Mats; Pettersson, David; Ólafsdóttir, Elínborg; Tryggvadóttir, Laufey; Hakanen, Tiina; Malila, Nea; Virtanen, Anni; Johannesen, Tom Børge; Larønningen, Siri; Ursin, Giske

    2018-04-01

    The Nordic Cancer Registries are among the oldest population-based registries in the world, with more than 60 years of complete coverage of what is now a combined population of 26 million. However, despite being the source of a substantial number of studies, there is no published paper comparing the different registries. Therefore, we did a systematic review to identify similarities and dissimilarities of the Nordic Cancer Registries, which could possibly explain some of the differences in cancer incidence rates across these countries. We describe and compare here the core characteristics of each of the Nordic Cancer Registries: (i) data sources; (ii) registered disease entities and deviations from IARC multiple cancer coding rules; (iii) variables and related coding systems. Major changes over time are described and discussed. All Nordic Cancer Registries represent a high quality standard in terms of completeness and accuracy of the registered data. Even though the information in the Nordic Cancer Registries in general can be considered more similar than any other collection of data from five different countries, there are numerous differences in registration routines, classification systems and inclusion of some tumors. These differences are important to be aware of when comparing time trends in the Nordic countries.

  2. CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia.

    Science.gov (United States)

    Venuthurupalli, Sree K; Hoy, Wendy E; Healy, Helen G; Cameron, Anne; Fassett, Robert G

    2017-06-07

    Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries. In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE]. The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.

  3. BioShaDock: a community driven bioinformatics shared Docker-based tools registry.

    Science.gov (United States)

    Moreews, François; Sallou, Olivier; Ménager, Hervé; Le Bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

    2015-01-01

    Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

  4. Czech Registry of Monoclonal Gammopathies - Technical Solution, Data Collection and Visualisation.

    Science.gov (United States)

    Brozova, L; Schwarz, D; Snabl, I; Kalina, J; Pavlickova, B; Komenda, M; Jarkovský, J; Němec, P; Horinek, D; Stefanikova, Z; Pour, L; Hájek, R; Maisnar, V

    2017-01-01

    The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.

  5. 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.

  6. The Nanomaterial Registry: facilitating the sharing and analysis of data in the diverse nanomaterial community

    Directory of Open Access Journals (Sweden)

    Ostraat ML

    2013-09-01

    Full Text Available Michele L Ostraat, Karmann C Mills, Kimberly A Guzan, Damaris MurryRTI International, Durham, NC, USAAbstract: The amount of data being generated in the nanotechnology research space is significant, and the coordination, sharing, and downstream analysis of the data is complex and consistently deliberated. The complexities of the data are due in large part to the inherently complicated characteristics of nanomaterials. Also, testing protocols and assays used for nanomaterials are diverse and lacking standardization. The Nanomaterial Registry has been developed to address such challenges as the need for standard methods, data formatting, and controlled vocabularies for data sharing. The Registry is an authoritative, web-based tool whose purpose is to simplify the community's level of effort in assessing nanomaterial data from environmental and biological interaction studies. Because the registry is meant to be an authoritative resource, all data-driven content is systematically archived and reviewed by subject-matter experts. To support and advance nanomaterial research, a set of minimal information about nanomaterials (MIAN has been developed and is foundational to the Registry data model. The MIAN has been used to create evaluation and similarity criteria for nanomaterials that are curated into the Registry. The Registry is a publicly available resource that is being built through collaborations with many stakeholder groups in the nanotechnology community, including industry, regulatory, government, and academia. Features of the Registry website (https://www.nanomaterialregistry.org/ currently include search, browse, side-by-side comparison of nanomaterials, compliance ratings based on the quality and quantity of data, and the ability to search for similar nanomaterials within the Registry. This paper is a modification and extension of a proceedings paper for the Institute of Electrical and Electronics Engineers.Keywords: nanoinformatics

  7. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS)--registry Swabia.

    Science.gov (United States)

    Nagel, Gabriele; Unal, Hatice; Rosenbohm, Angela; Ludolph, Albert C; Rothenbacher, Dietrich

    2013-02-17

    The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2-5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany. The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010) and prospective (from 01.10.2010) collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case-control study was implemented based on the registry that also included the collection of various biological materials.Retrospectively, 420 patients (222 men and 198 women) were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case-control study. All participants in the case-control study provided also a blood sample. The prospective part of the study is ongoing. The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

  8. Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

    Science.gov (United States)

    Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

    2016-04-18

    We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

  9. Tumor registry data, Hiroshima and Nagasaki 1957-1959: malignant neoplasms

    Energy Technology Data Exchange (ETDEWEB)

    Harada, Tomin; Ide, Masao; Ishida, Morihiro; Troup, G M

    1963-10-03

    The report concerns three aspects of the Hiroshima and Nagasaki Tumor Registry data, 1957-1959: comparability, reliability and validity of incidence rates of malignant neoplasms obtained from the Tumor Registries and various statistical problems of registered data related to the Life Span Study sample and Adult Health Study sample; incidence rates of main site of malignant neoplasms obtained from the Tumor Registries are compared with those of the United States and Denmark; and incidence of malignant neoplasm among Hiroshima and Nagasaki A-bomb survivors. 15 references, 7 figures, 30 tables.

  10. Findings from the Peutz-Jeghers syndrome registry of Uruguay

    KAUST Repository

    Tchekmedyian, Asadur

    2013-11-19

    Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.

  11. The International Registry on Hand and Composite Tissue Transplantation.

    Science.gov (United States)

    Petruzzo, Palmina; Lanzetta, Marco; Dubernard, Jean-Michel; Landin, Luis; Cavadas, Pedro; Margreiter, Raimund; Schneeberger, Stephan; Breidenbach, Warren; Kaufman, Christina; Jablecki, Jerzy; Schuind, Frédéric; Dumontier, Christian

    2010-12-27

    The International Registry on Hand and Composite Tissue Transplantation was founded in May 2002, and the analysis of all cases with follow-up information up to July 2010 is presented here. From September 1998 to July 2010, 49 hands (17 unilateral and 16 bilateral hand transplantations, including 1 case of bilateral arm transplantation) have been reported, for a total of 33 patients. They were 31 men and 2 women (median age 32 years). Time since hand loss ranged from 2 months to 34 years, and in 46% of cases, the level of amputation was at wrist. Immunosuppressive therapy included tacrolimus, mycophenolate mofetil, sirolimus, and steroids; polyclonal or monoclonal antibodies were used for induction. Topical immunosuppression was also used in several cases. Follow-up ranges from 1 month to 11 years. One patient died on day 65. Three patients transplanted in the Western countries have lost their graft, whereas until September 2009, seven hand grafts were removed for noncompliance to the immunosuppressive therapy in China. Eighty-five percent of recipients experienced at least one episode of acute rejection within the first year, and they were reversible when promptly treated. Side effects included opportunistic infections, metabolic complications, and malignancies. All patients developed protective sensibility, 90% of them developed tactile sensibility, and 82.3% also developed a discriminative sensibility. Motor recovery enabled patients to perform most daily activities. Hand transplantation is a complex procedure, and its success is based on patient's compliance and his or her careful evaluation before and after transplantation.

  12. COPD predicts mortality in HF: the Norwegian Heart Failure Registry.

    Science.gov (United States)

    De Blois, Jonathan; Simard, Serge; Atar, Dan; Agewall, Stefan

    2010-03-01

    Chronic obstructive pulmonary disease (COPD) and chronic heart failure (HF) are common clinical conditions that share tobacco as a risk factor. Our aim was to evaluate the prognostic impact of COPD on HF patients. The Norwegian Heart Failure Registry was used. The study included 4132 HF patients (COPD, n = 699) from 22 hospitals (mean follow-up, 13.3 months). COPD patients were older, more often smokers and diabetics, less often on beta-blockers and had a higher heart rate. They were more often in New York Heart Association (NYHA) Class III or IV (COPD, 63%; no COPD, 51%), although left ventricular ejection fraction (LVEF) distribution was similar. COPD independently predicted death (adjusted hazard ratio [HR], 1.188; 95% CI: 1.015 to 1.391; P = 0.03) along with age, creatinine, NYHA Class III/IV (HR, 1.464; 95% CI: 1.286 to 1.667) and diabetes. beta-blockers at baseline were associated with improved survival in patients with LVEF < or =40% independently of COPD. COPD is associated with a poorer survival in HF patients. COPD patients are overrated in terms of NYHA class in comparison with patients with similar LVEF. Nonetheless, NYHA class remains the strongest predictor of death in these patients. Copyright (c) 2010 Elsevier Inc. All rights reserved.

  13. Canadian Gas Association response to the Voluntary Challenge and Registry

    International Nuclear Information System (INIS)

    1996-11-01

    Since the inception of Canada's Voluntary Challenge and Registry (VCR) program in 1994, the Canadian Gas Association (CGA) and its members have been active in promoting emissions reductions. Natural gas is considered to be one of the cleanest fossil fuels. However, the industry faces several challenges. Over 50 per cent of Canadian production is exported to the US, but no credits are being received to offset emission reduction in the US from fuel switching to natural gas. Also, more than 80 per cent of the emissions from the natural gas cycle occur at the burner tip, therefore users of natural gas must share the responsibility for reducing emissions through conservation practices and greater use of high-efficiency equipment. The activities undertaken by the CGA in response to the VCR program, including research and technology development were reviewed, and a forecast of future activities was presented. It was predicted that the demand for Canadian natural gas will exceed the historic rate of emissions reductions accomplished through energy conservation and efficiency improvements, hence there is likely to be an increase in net emissions. An argument was made to establish proxy indicators of success for the gas industry for VCR, such as emissions on a unit basis (unit of energy, production, throughput, etc.) to take into account the fact that the increase in natural gas demand is, in part, the result of fuel switching from more polluting fuels

  14. Findings from the Peutz-Jeghers syndrome registry of uruguay.

    Directory of Open Access Journals (Sweden)

    Asadur Tchekmedyian

    Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.

  15. 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

  16. United States Transuranium and Uranium Registries. Annual report February 1, 2001 - January 31, 2002

    International Nuclear Information System (INIS)

    Ehrhart, Susan M.; Filipy, Ronald E.

    2002-01-01

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed

  17. United States Transuranium and Uranium Registries. Annual report February 1, 2001--January 31, 2002

    Energy Technology Data Exchange (ETDEWEB)

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

    2002-07-01

    This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.

  18. Chronic thromboembolic pulmonary hypertension (CTEPH): results from an international prospective registry

    NARCIS (Netherlands)

    Pepke-Zaba, Joanna; Delcroix, Marion; Lang, Irene; Mayer, Eckhard; Jansa, Pavel; Ambroz, David; Treacy, Carmen; D'Armini, Andrea M.; Morsolini, Marco; Snijder, Repke; Bresser, Paul; Torbicki, Adam; Kristensen, Bent; Lewczuk, Jerzy; Simkova, Iveta; Barberà, Joan A.; de Perrot, Marc; Hoeper, Marius M.; Gaine, Sean; Speich, Rudolf; Gomez-Sanchez, Miguel A.; Kovacs, Gabor; Hamid, Abdul Monem; Jaïs, Xavier; Simonneau, Gérald

    2011-01-01

    Chronic thromboembolic pulmonary hypertension (CTEPH) is often a sequel of venous thromboembolism with fatal natural history; however, many cases can be cured by pulmonary endarterectomy. The clinical characteristics and current management of patients enrolled in an international CTEPH registry was

  19. Radioactive waste management registry. A software tool for managing information on waste inventory

    International Nuclear Information System (INIS)

    Miaw, S.T.W.

    2001-01-01

    The IAEA developed a software tool, the RWM Registry (Radioactive Waste Management Registry) which is primarily concerned with the management and recording of reliable information on the radioactive waste during its life-cycle, i.e. from generation to disposal and beyond. In the current version, it aims to assist the management of waste from nuclear applications. the Registry is a managerial tool and offers an immediate overview of the various waste management steps and activities. This would facilitate controlling, keeping track of waste and waste package, planning, optimizing of resources, monitoring of related data, disseminating of information, taking actions and making decisions related to the waste management. Additionally, the quality control of waste products and a Member State's associated waste management quality assurance programme are addressed. The tool also facilitates to provide information on waste inventory as required by the national regulatory bodies. The RWM Registry contains two modules which are described in detail

  20. The state of digitisation of the land registry operations in Uganda ...

    African Journals Online (AJOL)

    The state of digitisation of the land registry operations in Uganda. ... establish the challenges and chart strategies to overcome the challenges faced by stakeholders. ... The authors recommend strengthening the management of both paper and ...

  1. Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data.

    Science.gov (United States)

    Kannan, Vaishnavi; Fish, Jason S; Mutz, Jacqueline M; Carrington, Angela R; Lai, Ki; Davis, Lisa S; Youngblood, Josh E; Rauschuber, Mark R; Flores, Kathryn A; Sara, Evan J; Bhat, Deepa G; Willett, DuWayne L

    2017-01-01

    Creation of a new electronic health record (EHR)-based registry often can be a "one-off" complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care. To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development. We adopted as guiding principles to (a) capture data as a byproduct of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed - either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM) - were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined "grains" from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display both

  2. Agency for Toxic Substances and Disease Registry (ATSDR) Hazardous Waste Site Polygon Data, 1996

    Data.gov (United States)

    National Aeronautics and Space Administration — The Agency for Toxic Substances and Disease Registry (ATSDR) Hazardous Waste Site Polygon Data, 1996 consists of 2042 polygons for selected hazardous waste sites...

  3. Evaluation of LexisNexis Batch Solutions in the New York State Cancer Registry

    OpenAIRE

    Pradhan, Eva; Boscoe, Francis P.

    2014-01-01

    Using Lexis Nexis Batch Solutions, the New York State Cancer Registry was able to identify substantial numbers of missing addresses, birth dates, and social security numbers, for persons diagnosed as far back as 1976.

  4. The Global Registry of Biodiversity Repositories: A Call for Community Curation

    Science.gov (United States)

    Miller, Scott E.; Trizna, Michael G.; Graham, Eileen; Crane, Adele E.

    2016-01-01

    Abstract The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource. PMID:27660523

  5. The impact of a model-based clinical regional registry for attention-deficit hyperactivity disorder.

    Science.gov (United States)

    Zanetti, Michele; Cartabia, Massimo; Didoni, Anna; Fortinguerra, Filomena; Reale, Laura; Mondini, Matteo; Bonati, Maurizio

    2017-09-01

    This article describes the development and clinical impact of the Italian Regional ADHD Registry, aimed at collecting and monitoring diagnostic and therapeutic pathways of care for attention-deficit hyperactivity disorder children and adolescents, launched by the Italian Lombardy Region in June 2011. In particular, the model-based software used to run the registry and manage clinical care data acquisition and monitoring, is described. This software was developed using the PROSAFE programme, which is already used for data collection in many Italian intensive care units, as a stand-alone interface case report form. The use of the attention-deficit hyperactivity disorder regional registry led to an increase in the appropriateness of the clinical management of all patients included in the registry, proving to be an important instrument in ensuring an appropriate healthcare strategy for children and adolescents with attention-deficit/hyperactivity disorder.

  6. The EMBARC European bronchiectasis registry: Protocol for an international observational study

    NARCIS (Netherlands)

    Chalmers, J.D. (James D.); S. Aliberti (Stefano); Polverino, E. (Eva); Vendrell, M. (Montserrat); Crichton, M. (Megan); Loebinger, M. (Michael); Dimakou, K. (Katerina); Clifton, I. (Ian); M. van der Eerden (Menno); G. Rohde (Gernot); Murris-Espin, M. (Marlene); Masefield, S. (Sarah); Gerada, E. (Eleanor); Shteinberg, M. (Michal); F.C. Ringshausen (Felix C.); Haworth, C. (Charles); W.G. Boersma (Wim); Rademacher, J. (Jessica); Hill, A.T. (Adam T.); Aksamit, T. (Timothy); O’Donnell, A. (Anne); Morgan, L. (Lucy); B. Milenkovic (Branislava); Tramma, L. (Leandro); Neves, J. (Joao); Menendez, R. (Rosario); Paggiaro, P. (Perluigi); Botnaru, V. (Victor); Skrgat, S. (Sabina); R. Wilson (Richard); Goeminne, P. (Pieter); De Soyza, A. (Anthony); T. Welte; Torres, A. (Antoni); S. Elborn (Stuart); Blasi, F. (Francesco)

    2016-01-01

    textabstractBronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) registry is a prospective,

  7. 77 FR 52745 - Leveraging Registries With Medical Device Data for Postmarket Surveillance and Evidence Appraisal...

    Science.gov (United States)

    2012-08-30

    ... structure of registries; (6) business models for sustainable efforts; and (7) strategies and priorities for... a problem or disease; and to examine trends of disease, treatment, or product use over time. To be...

  8. Current variables, definitions and endpoints of the European Cardiovascular Magnetic Resonance Registry

    Directory of Open Access Journals (Sweden)

    Schwitter Juerg

    2009-11-01

    Full Text Available Abstract Background Cardiovascular Magnetic Resonance (CMR is increasingly used in daily clinical practice. However, little is known about its clinical utility such as image quality, safety and impact on patient management. In addition, there is limited information about the potential of CMR to acquire prognostic information. Methods The European Cardiovascular Magnetic Resonance Registry (EuroCMR Registry will consist of two parts: 1 Multicenter registry with consecutive enrolment of patients scanned in all participating European CMR centres using web based online case record forms. 2 Prospective clinical follow up of patients with suspected coronary artery disease (CAD and hypertrophic cardiomyopathy (HCM every 12 months after enrolment to assess prognostic data. Conclusion The EuroCMR Registry offers an opportunity to provide information about the clinical utility of routine CMR in a large number of cases and a diverse population. Furthermore it has the potential to gather information about the prognostic value of CMR in specific patient populations.

  9. Analysis of Existing Guidelines for the Systematic Planning Process of Clinical Registries.

    Science.gov (United States)

    Löpprich, Martin; Knaup, Petra

    2016-01-01

    Clinical registries are a powerful method to observe the clinical practice and natural disease history. In contrast to clinical trials, where guidelines and standardized methods exist and are mandatory, only a few initiatives have published methodological guidelines for clinical registries. The objective of this paper was to review these guidelines and systematically assess their completeness, usability and feasibility according to a SWOT analysis. The results show that each guideline has its own strengths and weaknesses. While one supports the systematic planning process, the other discusses clinical registries in great detail. However, the feasibility was mostly limited and the special requirements of clinical registries, their flexible, expandable and adaptable technological structure was not addressed consistently.

  10. Environmental Protection Agency (EPA) Facility Registry Service (FRS) Wastewater Treatment Plants

    Data.gov (United States)

    Department of Homeland Security — This GIS dataset contains data on wastewater treatment plants, based on EPA's Facility Registry Service (FRS) and NPDES, along with Clean Watersheds Needs Survey...

  11. The Global Registry of Biodiversity Repositories: A Call for Community Curation.

    Science.gov (United States)

    Schindel, David E; Miller, Scott E; Trizna, Michael G; Graham, Eileen; Crane, Adele E

    2016-01-01

    The Global Registry of Biodiversity Repositories is an online metadata resource for biodiversity collections, the institutions that contain them, and associated staff members. The registry provides contact and address information, characteristics of the institutions and collections using controlled vocabularies and free-text descripitons, links to related websites, unique identifiers for each institution and collection record, text fields for loan and use policies, and a variety of other descriptors. Each institution record includes an institutionCode that must be unique, and each collection record must have a collectionCode that is unique within that institution. The registry is populated with records imported from the largest similar registries and more can be harmonized and added. Doing so will require community input and curation and would produce a truly comprehensive and unifying information resource.

  12. Enhancing requirements engineering for patient registry software systems with evidence-based components.

    Science.gov (United States)

    Lindoerfer, Doris; Mansmann, Ulrich

    2017-07-01

    Patient registries are instrumental for medical research. Often their structures are complex and their implementations use composite software systems to meet the wide spectrum of challenges. Commercial and open-source systems are available for registry implementation, but many research groups develop their own systems. Methodological approaches in the selection of software as well as the construction of proprietary systems are needed. We propose an evidence-based checklist, summarizing essential items for patient registry software systems (CIPROS), to accelerate the requirements engineering process. Requirements engineering activities for software systems follow traditional software requirements elicitation methods, general software requirements specification (SRS) templates, and standards. We performed a multistep procedure to develop a specific evidence-based CIPROS checklist: (1) A systematic literature review to build a comprehensive collection of technical concepts, (2) a qualitative content analysis to define a catalogue of relevant criteria, and (3) a checklist to construct a minimal appraisal standard. CIPROS is based on 64 publications and covers twelve sections with a total of 72 items. CIPROS also defines software requirements. Comparing CIPROS with traditional software requirements elicitation methods, SRS templates and standards show a broad consensus but differences in issues regarding registry-specific aspects. Using an evidence-based approach to requirements engineering for registry software adds aspects to the traditional methods and accelerates the software engineering process for registry software. The method we used to construct CIPROS serves as a potential template for creating evidence-based checklists in other fields. The CIPROS list supports developers in assessing requirements for existing systems and formulating requirements for their own systems, while strengthening the reporting of patient registry software system descriptions. It may be

  13. 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

  14. The role of the central registry in the safety and security of radioactive materials in Hungary

    International Nuclear Information System (INIS)

    Petoe, A.; Safar, J.; Turi, G.; Abonyi, T.

    2001-01-01

    After a brief overview of the Hungarian legislation and regulatory infrastructure the report provides information on the number of companies and licensees using radioactive materials and explains also the role of the established central registry of radiation sources and radioactive materials in Hungary for improving the safety and security of radioactive materials in the country. It concludes that a reliable nationwide central registry can be a very useful tool for increasing the safety and security of radiation sources and radioactive materials. (author)

  15. 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.

  16. Cardiac arrest risk standardization using administrative data compared to registry data.

    Directory of Open Access Journals (Sweden)

    Anne V Grossestreuer

    Full Text Available Methods for comparing hospitals regarding cardiac arrest (CA outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data.Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905 compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919. When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838 compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831. All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data.Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.

  17. The trauma registry compared to All Patient Refined Diagnosis Groups (APR-DRG).

    Science.gov (United States)

    Hackworth, Jodi; Askegard-Giesmann, Johanna; Rouse, Thomas; Benneyworth, Brian

    2017-05-01

    Literature has shown there are significant differences between administrative databases and clinical registry data. Our objective was to compare the identification of trauma patients using All Patient Refined Diagnosis Related Groups (APR-DRG) as compared to the Trauma Registry and estimate the effects of those discrepancies on utilization. Admitted pediatric patients from 1/2012-12/2013 were abstracted from the trauma registry. The patients were linked to corresponding administrative data using the Pediatric Health Information System database at a single children's hospital. APR-DRGs referencing trauma were used to identify trauma patients. We compared variables related to utilization and diagnosis to determine the level of agreement between the two datasets. There were 1942 trauma registry patients and 980 administrative records identified with trauma-specific APR-DRG during the study period. Forty-two percent (816/1942) of registry records had an associated trauma-specific APR-DRG; 69% of registry patients requiring ICU care had trauma APR-DRGs; 73% of registry patients with head injuries had trauma APR-DRGs. Only 21% of registry patients requiring surgical management had associated trauma APR-DRGs, and 12.5% of simple fractures had associated trauma APR-DRGs. APR-DRGs appeared to only capture a fraction of the entire trauma population and it tends to be the more severely ill patients. As a result, the administrative data was not able to accurately answer hospital or operating room utilization as well as specific information on diagnosis categories regarding trauma patients. APR-DRG administrative data should not be used as the only data source for evaluating the needs of a trauma program. Copyright © 2016 Elsevier Ltd. All rights reserved.

  18. Comparing contemporary revision burden among hip and knee joint replacement registries

    Directory of Open Access Journals (Sweden)

    Brian J. McGrory, MD, MS

    2016-06-01

    Conclusions: Revision burden has gradually decreased for hip replacements and has remained relatively constant for knee replacements both for the last 4 years and compared to historic controls. Knee revision burden was lower than hip revision burden for each period examined. Revision burden is one measure that may be helpful in following the effect of changes in surgical technique and implant design over time in registry populations and may be a helpful way to compare overall results between registries.

  19. Statewide Quality Improvement Initiative to Reduce Early Elective Deliveries and Improve Birth Registry Accuracy.

    Science.gov (United States)

    Kaplan, Heather C; King, Eileen; White, Beth E; Ford, Susan E; Fuller, Sandra; Krew, Michael A; Marcotte, Michael P; Iams, Jay D; Bailit, Jennifer L; Bouchard, Jo M; Friar, Kelly; Lannon, Carole M

    2018-04-01

    To evaluate the success of a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data accuracy rapidly and at scale in Ohio. Between February 2013 and March 2014, participating hospitals were involved in a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data. This initiative was designed as a learning collaborative model (group webinars and a single face-to-face meeting) and included individual quality improvement coaching. It was implemented using a stepped wedge design with hospitals divided into three balanced groups (waves) participating in the initiative sequentially. Birth registry data were used to assess hospital rates of nonmedically indicated inductions at less than 39 weeks of gestation. Comparisons were made between groups participating and those not participating in the initiative at two time points. To measure birth registry accuracy, hospitals conducted monthly audits comparing birth registry data with the medical record. Associations were assessed using generalized linear repeated measures models accounting for time effects. Seventy of 72 (97%) eligible hospitals participated. Based on birth registry data, nonmedically indicated inductions at less than 39 weeks of gestation declined in all groups with implementation (wave 1: 6.2-3.2%, Pinitiative, they saw significant decreases in rates of early elective deliveries as compared with wave 3 (control; P=.018). All waves had significant improvement in birth registry accuracy (wave 1: 80-90%, P=.017; wave 2: 80-100%, P=.002; wave 3: 75-100%, Pinitiative enabled statewide spread of change strategies to decrease early elective deliveries and improve birth registry accuracy over 14 months and could be used for rapid dissemination of other evidence-based obstetric care practices across states or hospital systems.

  20. Clinical trials in dentistry in India: Analysis from trial registry.

    Science.gov (United States)

    Gowri, S; Kannan, Sridharan

    2017-01-01

    Evidence-based practice requires clinical trials to be performed. In India, if any clinical trial has to be performed, it has to be registered with clinical trial registry of India. Studies have shown that the report of clinical trials is poor in dentistry. Hence, the present study has been conducted to assess the type and trends of clinical trials being undertaken in dentistry in India over a span of 6 years. All the clinical trials which were registered with the Central Trial Registry of India (CTRI) (www.ctri.nic.in) from January 1, 2007 to March 3, 2014 were evaluated using the keyword "dental." Following information were collected for each of the clinical trials obtained from the search; number of centres (single center/multicentric), type of the institution undertaking the research (government/private/combined), study (observational/interventional), study design (randomized/single blinded/double-blinded), type of health condition, type of participants (healthy/patients), sponsors (academia/commercial), phase of clinical trial (Phase 1/2/3/4), publication details (published/not published), whether it was a postgraduate thesis or not and prospective or retrospective registration of clinical trials, methodological quality (method of randomization, allocation concealment). Descriptive statistics was used for analysis of various categories. Trend analysis was done to assess the changes over a period of time. The search yielded a total of 84 trials of which majority of them were single centered. Considering the study design more than half of the registered clinical trials were double-blinded (47/84 [56%]). With regard to the place of conducting a trial, most of the trials were planned to be performed in private hospitals (56/84 [66.7%]). Most (79/84, 94.1%) of the clinical trials were interventional while only 5/84 (5.9%) were observational. Majority (65/84, 77.4%) of the registered clinical trials were recruiting patients while the rest were being done in healthy

  1. The Portuguese Registry of Hypertrophic Cardiomyopathy: Overall results.

    Science.gov (United States)

    Cardim, Nuno; Brito, Dulce; Rocha Lopes, Luís; Freitas, António; Araújo, Carla; Belo, Adriana; Gonçalves, Lino; Mimoso, Jorge; Olivotto, Iacopo; Elliott, Perry; Madeira, Hugo

    2018-01-01

    We report the results of the Portuguese Registry of Hypertrophic Cardiomyopathy, an initiative that reflects the current spectrum of cardiology centers throughout the territory of Portugal. A direct invitation to participate was sent to cardiology departments. Baseline and outcome data were collected. A total of 29 centers participated and 1042 patients were recruited. Four centers recruited 49% of the patients, of whom 59% were male, and mean age at diagnosis was 53±16 years. Hypertrophic cardiomyopathy (HCM) was identified as familial in 33%. The major reason for diagnosis was symptoms (53%). HCM was obstructive in 35% of cases and genetic testing was performed in 51%. Invasive septal reduction therapy was offered to 8% (23% of obstructive patients). Most patients (84%) had an estimated five-year risk of sudden death of <6%. Thirteen percent received an implantable cardioverter-defibrillator. After a median follow-up of 3.3 years (interquartile range [P25-P75] 1.3-6.5 years), 31% were asymptomatic. All-cause mortality was 1.19%/year and cardiovascular mortality 0.65%/year. The incidence of heart failure-related death was 0.25%/year, of sudden cardiac death 0.22%/year and of stroke-related death 0.04%/year. Heart failure-related death plus heart transplantation occurred in 0.27%/year and sudden cardiac death plus equivalents occurred in 0.53%/year. Contemporary HCM in Portugal is characterized by relatively advanced age at diagnosis, and a high proportion of invasive treatment of obstructive forms. Long-term mortality is low; heart failure is the most common cause of death followed by sudden cardiac death. However, the burden of morbidity remains considerable, emphasizing the need for disease-specific treatments that impact the natural history of the disease. Copyright © 2017 Sociedade Portuguesa de Cardiologia. Publicado por Elsevier España, S.L.U. All rights reserved.

  2. Developing a national radiation oncology registry: From acorns to oaks.

    Science.gov (United States)

    Palta, Jatinder R; Efstathiou, Jason A; Bekelman, Justin E; Mutic, Sasa; Bogardus, Carl R; McNutt, Todd R; Gabriel, Peter E; Lawton, Colleen A; Zietman, Anthony L; Rose, Christopher M

    2012-01-01

    The National Radiation Oncology Registry (NROR) is a collaborative initiative of the Radiation Oncology Institute and the American Society of Radiation Oncology, with input and guidance from other major stakeholders in oncology. The overarching mission of the NROR is to improve the care of cancer patients by capturing reliable information on treatment delivery and health outcomes. The NROR will collect patient-specific radiotherapy data electronically to allow for rapid comparison of the many competing treatment modalities and account for effectiveness, outcome, utilization, quality, safety, and cost. It will provide benchmark data and quality improvement tools for individual practitioners. The NROR steering committee has determined that prostate cancer provides an appropriate model to test the concept and the data capturing software in a limited number of sites. The NROR pilot project will begin with this disease-gathering treatment and outcomes data from a limited number of treatment sites across the range of practice; once feasibility is proven, it will scale up to more sites and diseases. When the NROR is fully implemented, all radiotherapy facilities, along with their radiation oncologists, will be solicited to participate in it. With the broader participation of the radiation oncology community, NROR has the potential to serve as a resource for determining national patterns of care, gaps in treatment quality, comparative effectiveness, and hypothesis generation to identify new linkages between therapeutic processes and outcomes. The NROR will benefit radiation oncologists and other care providers, payors, vendors, policy-makers, and, most importantly, cancer patients by capturing reliable information on population-based radiation treatment delivery. Copyright © 2012 (c) 2010 American Society for Radiation Oncology. Published by Elsevier Inc. All rights reserved. Published by Elsevier Inc. All rights reserved.

  3. Triptan safety during pregnancy: a Norwegian population registry study

    International Nuclear Information System (INIS)

    Nezvalová-Henriksen, Kateřina; Spigset, Olav; Nordeng, Hedvig

    2013-01-01

    Knowledge on triptan safety during pregnancy remains limited to their class effect or studies on sumatriptan. Our aim was to evaluate the individual effect of four most frequently used triptans on several pregnancy outcomes. We used the Norwegian prescription database to access information on triptans redeemed by pregnant women living in Norway between 2004 and 2007. This database was linked to the Medical Birth Registry of Norway covering every institutional delivery in Norway and providing information on pregnancy, delivery, maternal and neonatal health. Estimates of associations with pregnancy outcomes were obtained by Generalised Estimation Equations analysis. Of the 181,125 women in our study, 1,465 (0.8 %) redeemed triptans during pregnancy, and 1,095 (0.6 %) redeemed triptans before pregnancy only (disease comparison group). The population comparison group comprised the remaining 178,565 women. Using this group as reference, we found no associations between triptan redemption during pregnancy and congenital malformations. Second trimester redemption was associated with postpartum haemorrhage (adjusted OR 1.57; 95 % CI 1.19–2.07). The disease comparison group had an increased risk of major congenital malformations (adjusted OR 1.48; 95 % CI 1.11–1.97), low birth weight (adjusted OR 1.39; 95 % CI 1.08–1.81), and preterm birth (adjusted OR 1.30; 95 % CI 1.06–1.60). The association of triptans with postpartum hemorrhage could be attributable to decreased platelet agreeability occurring in severe migraine. Likewise, the increased risk of major congenital malformations and other adverse pregnancy outcomes in the disease comparison group might be attributable to migraine severity

  4. Comorbidity in heart failure. Results of the Spanish RICA Registry.

    Science.gov (United States)

    Ruiz-Laiglesia, F-J; Sánchez-Marteles, M; Pérez-Calvo, J-I; Formiga, F; Bartolomé-Satué, J A; Armengou-Arxé, A; López-Quirós, R; Pérez-Silvestre, J; Serrado-Iglesias, A; Montero-Pérez-Barquero, M

    2014-12-01

    We sought to identify the comorbidities associated with heart failure (HF) in a non-selected cohort of patients, and its influence on mortality and rehospitalization. Data were obtained from the 'Registro de Insuficiencia Cardiaca' (RICA) of the Spanish Society of Internal Medicine. The registry includes patients prospectively admitted in Internal Medicine units for acute HF. Variables included in Charlson Index (ChI) were collected and analysed according to age, gender, left ventricular ejection fraction (LVEF) and Barthel Index. The primary end point of study was the likelihood of rehospitalization and death for any cause during the year after discharge. We included 2051 patients, mean age 78 and 53% females. LVEF was ⩾ 50% in 59.1% of the cohort. There was a high degree of dependency as measured by Barthel Index (14.8 % had an index ≤ 60). Mean ChI was 2.91 (SD ± 2.4). The most frequent comorbidities included in ChI were diabetes mellitus (44.3%), chronic renal impairment (30.8%) and chronic obstructive pulmonary disease (COPD) (27.4%). Age, myocardial infarction, peripheral artery disease, dementia, COPD, chronic renal impairment and diabetes with target-organ damage were all identified as independent prognostic factors for the combined end point of rehospitalization and death at 1 year. However, if multivariate analysis was done including ChI, only this remained as an independent prognostic factor for the combined end point (P < 0.001). HF is a comorbid condition. ChI is a simple and feasible tool for estimating the burden of comorbidities in such population. We believe that a holistic approach to HF would improve prognosis and the relief the pressure exerted on public health services. © The Author 2014. Published by Oxford University Press on behalf of the Association of Physicians. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  5. Development of a Falls Registry: A Pilot Study.

    Science.gov (United States)

    Berg, Gina M; Carlson, Tara; Fairchild, Joanne; Edwards, Courtney; Sorell, Ryan

    Each year approximately 1 in 4 healthy older adults aged 65+ years and 1 in 2 aged 80+ years living in the community will fall. Fall-related injuries are the leading cause of death and disability and cost the United States approximately $31 billion annually. Currently, no repository of scene data exists that informs prevention programs regarding circumstances that contribute to older adult falls. This was a multicenter (4 sites: Kansas, Maryland, Oregon, and Texas) pilot study consisting of interviews of older (55+ years) patients who had been admitted to a trauma center with fall-related injuries. Questions included information regarding environment, behaviors, injuries, and demographics. Additional information was abstracted from patient medical record: comorbidities, medications, and discharge information. Data are presented descriptively. Forty-nine patients were interviewed: average age was 78 years; White (93.9%); female (53.1%); and most (63.3%) had fallen before. The most commonly reported fall factors and injuries included those occurring at home without agency services (65.0%), on hard flooring (51.1%), with laced shoes (44.2%), and with walkers (36.7%) and contained contusion/open wound of head (61.2%). Survey time was anecdotally estimated at 10-15 min. Preliminary data suggest that prevention efforts should emphasize on educating older adults to focus on ambulation, body position, and use of assistive devices in their daily activities. The development of a systematic and organized registry that documents scene data would inform public health agencies to develop fall prevention programs that promote older adult safety. Furthermore, it would provide a large sample size to test factor associations with injury severity.

  6. Quality Registries in Sweden, Healthcare Improvements and Elderly Persons with Cognitive Impairments.

    Science.gov (United States)

    Mattsson, Titti

    2016-12-01

    Policy-makers, the medical industry and researchers are demonstrating a keen interest in the potential of large registries of patient data, both nationally and internationally. The registries offer promising ways to measure and develop operational quality within health and medical care services. As a result of certain favourable patient data regulations and government funding, the development of quality registries is advanced in Sweden. The combination of increasing demand for more cost-efficient healthcare that can accommodate the demographic development of a rapidly ageing population, and the emergence of eHealth with an increasing digitalisation of patient data, calls attention to quality registries as a possible way for healthcare improvements. However, even if the use of registries has many advantages, there are some drawbacks from a patient privacy point of view. This article aims to analyse this growing interdependence of quality registries for the healthcare sector. It discusses some lessons from the Swedish case, with particular focus on the collection of data from elderly persons with cognitive impairments.

  7. Oral cancer in Libya and development of regional oral cancer registries: A review.

    Science.gov (United States)

    BenNasir, E; El Mistiri, M; McGowan, R; Katz, R V

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people.

  8. 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.

  9. Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.

    Science.gov (United States)

    Bellgard, Matthew I; Walker, Caroline E; Napier, Kathryn R; Lamont, Leanne; Hunter, Adam A; Render, Lee; Radochonski, Maciej; Pang, Jing; Pedrotti, Annette; Sullivan, David R; Kostner, Karam; Bishop, Warrick; George, Peter M; O'Brien, Richard C; Clifton, Peter M; Bockxmeer, Frank M Van; Nicholls, Stephen J; Hamilton-Craig, Ian; Dawkins, Hugh Js; Watts, Gerald F

    2017-10-01

    Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often under-treated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, web-based Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.

  10. [Italian Cystic Fibrosis Registry. Report 2011-2014].

    Science.gov (United States)

    Giordani, Barbara; Amato, Annalisa; Majo, Fabio; Ferrari, Gianluca; Quattrucci, Serena; Minicucci, Laura; Padoan, Rita; Floridia, Giovanna; Puppo Fornaro, Gianna; Taruscio, Domenica; Salvatore, Marco

    2018-01-01

    The Italian Cystic Fibrosis Registry (ICFR) is based on a new agreement about the data flow towards the Registry signed on October, 4th 2016 by the Centre for Rare Diseases of the Italian National Institute of Health (NIH), the clinicians of the Italian National Referral and Support Centres for Cystic Fibrosis, the Paediatric Hospital "Bambino Gesù" (Rome), the Italian Cystic Fibrosis Society, and the Italian League for Cystic Fibrosis. The aim of the present Report is to improve the knowledge on cystic fibrosis (CF) through the epidemiological description of Italian patients. The members of the Scientific and Technical Committee have to write a report on data collected by ICFR, in order to contribute to achieve the aims of ICFR itself, i.e., to improve the care of CF patients. In particular, the Report should contribute to the following objectives: - to analyze the medium and long-term clinical and epidemiological trends of the disease; - to identify the main healthcare needs at regional and national level in order to contribute to the healthcare programmes and to the distribution of resources; - to compare Italian data with the international ones. Analyses and results described in the present Report are referred to patients in charge to the Italian National Referral and Support Centres for Cystic Fibrosis in the period 2011-2014. Data were sent by Centres by means of a specific software (Camilla, Ibis Informatica) and has undergone a double quality control (QC): the first by NIH and the second at a European level (before the inclusion of the Italian data within the European Cystic Fibrosis Registry). These QCs assure the completeness and accuracy of data as well as their consistency with European core data. A total of 29 different CF centres (referral, support, and Paediatric Hospital "Bambino Gesù") sent their data to ICFR; data referred to the period 2011-2014. Data regarding Sardinia Region (Southern Italy) are missing; data from Molise (Southern Italy) CF

  11. Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study

    Directory of Open Access Journals (Sweden)

    Pan William KY

    2006-09-01

    Full Text Available Abstract Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0% than vaccinated children (26.5% (p value = 0.01. A substantial proportion of parents of exempt children support immunization

  12. The International Collaboration for Autism Registry Epidemiology (iCARE): Multinational Registry-Based Investigations of Autism Risk Factors and Trends

    Science.gov (United States)

    Schendel, Diana E.; Bresnahan, Michaeline; Carter, Kim W.; Francis, Richard W.; Gissler, Mika; Grønborg, Therese K.; Gross, Raz; Gunnes, Nina; Hornig, Mady; Hultman, Christina M.; Langridge, Amanda; Lauritsen, Marlene B.; Leonard, Helen; Parner, Erik T.; Reichenberg, Abraham; Sandin, Sven; Sourander, Andre; Stoltenberg, Camilla; Suominen, Auli; Surén, Pål; Susser, Ezra

    2013-01-01

    The International Collaboration for Autism Registry Epidemiology (iCARE) is the first multinational research consortium (Australia, Denmark, Finland, Israel, Norway, Sweden, USA) to promote research in autism geographical and temporal heterogeneity, phenotype, family and life course patterns, and etiology. iCARE devised solutions to challenges in…

  13. 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.

  14. 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.

  15. Reducing selection bias in case-control studies from rare disease registries.

    Science.gov (United States)

    Cole, J Alexander; Taylor, John S; Hangartner, Thomas N; Weinreb, Neal J; Mistry, Pramod K; Khan, Aneal

    2011-09-12

    In clinical research of rare diseases, where small patient numbers and disease heterogeneity limit study design options, registries are a valuable resource for demographic and outcome information. However, in contrast to prospective, randomized clinical trials, the observational design of registries is prone to introduce selection bias and negatively impact the validity of data analyses. The objective of the study was to demonstrate the utility of case-control matching and the risk-set method in order to control bias in data from a rare disease registry. Data from the International Collaborative Gaucher Group (ICGG) Gaucher Registry were used as an example. A case-control matching analysis using the risk-set method was conducted to identify two groups of patients with type 1 Gaucher disease in the ICGG Gaucher Registry: patients with avascular osteonecrosis (AVN) and those without AVN. The frequency distributions of gender, decade of birth, treatment status, and splenectomy status were presented for cases and controls before and after matching. Odds ratios (and 95% confidence intervals) were calculated for each variable before and after matching. The application of case-control matching methodology results in cohorts of cases (i.e., patients with AVN) and controls (i.e., patients without AVN) who have comparable distributions for four common parameters used in subject selection: gender, year of birth (age), treatment status, and splenectomy status. Matching resulted in odds ratios of approximately 1.00, indicating no bias. We demonstrated bias in case-control selection in subjects from a prototype rare disease registry and used case-control matching to minimize this bias. Therefore, this approach appears useful to study cohorts of heterogeneous patients in rare disease registries.

  16. Implementing Sustainable Data Collection for a Cardiac Outcomes Registry in an Australian Public Hospital.

    Science.gov (United States)

    Cox, Nicholas; Brennan, Angela; Dinh, Diem; Brien, Rita; Cowie, Kath; Stub, Dion; Reid, Christopher M; Lefkovits, Jeffrey

    2018-04-01

    Clinical outcome registries are an increasingly vital component of ensuring quality and safety of patient care. However, Australian hospitals rarely have additional resources or the capacity to fund the additional staff time to complete the task of data collection and entry. At the same time, registry funding models do not support staff for the collection of data at the site but are directed towards the central registry tasks of data reporting, managing and quality monitoring. The sustainability of a registry is contingent on building efficiencies into data management and collection. We describe the methods used in a large Victorian public hospital to develop a sustainable data collection system for the Victorian Cardiac Outcomes Registry (VCOR), using existing staff and resources common to many public hospitals. We describe the features of the registry and the hospital specific strategies that allowed us to do this as part of our routine business of providing good quality cardiac care. All clinical staff involved in patient care were given some data collection task with the entry of these data embedded into the staff's daily workflow. A senior cardiology registrar was empowered to allocate data entry tasks to colleagues when data were found to be incomplete. The task of 30-day follow-up proved the most onerous part of data collection. Cath-lab nursing staff were allocated this role. With hospital accreditation and funding models moving towards performance based quality indicators, collection of accurate and reliable information is crucial. Our experience demonstrates the successful implementation of clinical outcome registry data collection in a financially constrained public hospital environment utilising existing resources. Copyright © 2017. Published by Elsevier B.V.

  17. Are data from national quality registries used in quality improvement at Swedish hospital clinics?

    Science.gov (United States)

    Fredriksson, Mio; Halford, Christina; Eldh, Ann Catrine; Dahlström, Tobias; Vengberg, Sofie; Wallin, Lars; Winblad, Ulrika

    2017-11-01

    To investigate the use of data from national quality registries (NQRs) in local quality improvement as well as purported key factors for effective clinical use in Sweden. Comparative descriptive: a web survey of all Swedish hospitals participating in three NQRs with different levels of development (certification level). Heads of the clinics and physician(s) at clinics participating in the Swedish Stroke Register (Riksstroke), the Swedish National Registry of Gallstone Surgery and Endoscopic Retrograde Cholangiopancreatography (GallRiks) and the Swedish Lung Cancer Registry (NLCR). Individual and unit level use of NQRs in local quality improvement, and perceptions on data quality, organizational conditions and user motivation. Riksstroke data were reported as most extensively used at individual and unit levels (x̅ 17.97 of 24 and x̅ 27.06 of 35). Data quality and usefulness was considered high for the two most developed NQRs (x̅ 19.86 for Riksstroke and x̅ 19.89 for GallRiks of 25). Organizational conditions were estimated at the same level for Riksstroke and GallRiks (x̅ 12.90 and x̅ 13.28 of 20) while the least developed registry, the NLCR, had lower estimates (x̅ 10.32). In Riksstroke, the managers requested registry data more often (x̅ 15.17 of 20). While there were significant differences between registries in key factors such as management interest, use of NQR data in local quality improvement seems rather prevalent, at least for Riksstroke. The link between the registry's level of development and factors important for routinization of innovations such as NQRs needs investigation. © The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  18. REAC/TS radiation accident registry. Update of accidents in the United States

    International Nuclear Information System (INIS)

    Ricks, R.C.; Berger, M.E.; Holloway, E.C.; Goans, R.E.

    2000-01-01

    Serious injury due to ionizing radiation is a rare occurrence. From 1944 to the present, 243 US accidents meeting dose criteria for classification as serious are documented in the REAC/TS Registry. Thirty individuals have lost their lives in radiation accidents in the United States. The Registry is part of the overall REAC/TS program providing 24-hour direct or consultative assistance regarding medical and heath physics problems associated with radiation accidents in local, national, and international incidents. The REAC/TS Registry serves as a repository of medically important information documenting the consequences of these accidents. Registry data are gathered from various sources. These include reports from the World Heath Organization (WHO), International Atomic Energy Agency (IAEA), US Nuclear Regulatory Commission (US NRC), state radiological health departments, medical/health physics literature, personal communication, the Internet, and most frequently, from calls for medical assistance to REAC/TS, as part of our 24-hour medical assistance program. The REAC/TS Registry for documentation of radiation accidents serves several useful purposes: 1) weaknesses in design, safety practices, training or control can be identified, and trends noted; 2) information regarding the medical consequences of injuries and the efficacy of treatment protocols is available to the treating physician; and 3) Registry case studies serve as valuable teaching tools. This presentation will review and summarize data on the US radiation accidents including their classification by device, accident circumstances, and frequency by respective states. Data regarding accidents with fatal outcomes will be reviewed. The inclusion of Registry data in the IAEA's International Reporting System of Radiation Events (RADEV) will also be discussed. (author)

  19. Reducing selection bias in case-control studies from rare disease registries

    Directory of Open Access Journals (Sweden)

    Mistry Pramod K

    2011-09-01

    Full Text Available Abstract Background In clinical research of rare diseases, where small patient numbers and disease heterogeneity limit study design options, registries are a valuable resource for demographic and outcome information. However, in contrast to prospective, randomized clinical trials, the observational design of registries is prone to introduce selection bias and negatively impact the validity of data analyses. The objective of the study was to demonstrate the utility of case-control matching and the risk-set method in order to control bias in data from a rare disease registry. Data from the International Collaborative Gaucher Group (ICGG Gaucher Registry were used as an example. Methods A case-control matching analysis using the risk-set method was conducted to identify two groups of patients with type 1 Gaucher disease in the ICGG Gaucher Registry: patients with avascular osteonecrosis (AVN and those without AVN. The frequency distributions of gender, decade of birth, treatment status, and splenectomy status were presented for cases and controls before and after matching. Odds ratios (and 95% confidence intervals were calculated for each variable before and after matching. Results The application of case-control matching methodology results in cohorts of cases (i.e., patients with AVN and controls (i.e., patients without AVN who have comparable distributions for four common parameters used in subject selection: gender, year of birth (age, treatment status, and splenectomy status. Matching resulted in odds ratios of approximately 1.00, indicating no bias. Conclusions We demonstrated bias in case-control selection in subjects from a prototype rare disease registry and used case-control matching to minimize this bias. Therefore, this approach appears useful to study cohorts of heterogeneous patients in rare disease registries.

  20. 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

  1. INSIST-ED: Italian Society of Andrology registry on penile prosthesis surgery. First data analysis

    Directory of Open Access Journals (Sweden)

    Edoardo Pescatori

    2016-07-01

    Full Text Available Objectives: The Italian Society of Andrology, i.e. “Società Italiana di Andrologia” (S.I.A., launched on December 2014 a prospective, multicenter, monitored and internal review board approved Registry for penile implants, the “INSIST-ED” (Italian Nationwide Systematic Inventarisation of Surgical Treatment for ED Registry. Purpose of this first report is to present a baseline data analysis of the characteristics of penile implant surgery in Italy. Material and methods: The INSIST-ED Registry is open to all surgeons implanting penile prostheses (all brands, all models in Italy, providing anonymous patient, device, surgical procedure, outcome, follow-up data, for both first and revision surgeries. A Registry project Board overviews all the steps of the project, and a Registry Monitor interacts with the Registry implanting surgeons. Results: As by April 8, 2016, 31 implanting surgeons actively joined the Registry, entering 367 surgical procedures in its database, that comprise: 310 first implants, 43 prosthesis substitutions, 14 device explants without substitution. Implanted devices account for: 288 three-component devices (81,3%, 20 two-component devices (5,4%, 45 non-hydraulic devices (12,3%. Leading primary ED etiologies in first implant surgeries resulted: former radical pelvic surgery in 111 cases (35,8%, Peyronie’s disease in 66 cases (21,3%, diabetes in 39 cases (12,6%. Two intraoperative complications have been recorded. Main reasons for 57 revision surgeries were: device failure (52,6%, erosion (19,3%, infection (12,3%, patient dissatisfaction (10,5%. Surgical settings for patients undergoing a first penile implant were: public hospitals in 251 cases (81%, private environments in 59 cases (19%. Conclusions: The INSIST-ED Registry represents the first European experience of penile prosthesis Registry. This baseline data analysis shows that: three-pieces inflatable prosthesis is the most implanted device, leading etiology of

  2. The design, construction and implementation of a computerised trauma registry in a developing South African metropolitan trauma service.

    Science.gov (United States)

    Laing, G L; Bruce, J L; Aldous, C; Clarke, D L

    2014-01-01

    The Pietermaritzburg Metropolitan Trauma Service formerly lacked a robust computerised trauma registry. This made surgical audit difficult for the purpose of quality of care improvement and development. We aimed to design, construct and implement a computerised trauma registry within our service. Twelve months following its implementation, we sought to examine and report on the quality of the registry. Formal ethical approval to maintain a computerised trauma registry was obtained prior to undertaking any design and development. Appropriate commercial software was sourced to develop this project. The registry was designed as a flat file. A flat file is a plain text or mixed text and binary file which usually contains one record per line or physical record. Thereafter the registry file was launched onto a secure server. This provided the benefits of access security and automated backups. Registry training was provided to clients by the developer. The exercise of data capture was then integrated into the process of service delivery, taking place at the endpoint of patient care (discharge, transfer or death). Twelve months following its implementation, the compliance rates of data entry were measured. The developer of this project managed to design, construct and implement an electronic trauma registry into the service. Twelve months following its implementation the data were extracted and audited to assess the quality. A total of 2640 patient entries were captured onto the registry. Compliance rates were in the order of eighty percent and client satisfaction rates were high. A number of deficits were identified. These included the omission of weekend discharges and underreporting of deaths. The construction and implementation of the computerised trauma registry was the beginning of an endeavour to continue improvements in the quality of care within our service. The registry provided a reliable audit at twelve months post implementation. Deficits and limitations were

  3. Evaluation of participant recruitment methods to a rare disease online registry.

    Science.gov (United States)

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. © 2014 Wiley Periodicals, Inc.

  4. Department of Defense Birth and Infant Health Registry: select reproductive health outcomes, 2003-2014.

    Science.gov (United States)

    Bukowinski, Anna T; Conlin, Ava Marie S; Gumbs, Gia R; Khodr, Zeina G; Chang, Richard N; Faix, Dennis J

    2017-11-01

    Established following a 1998 directive, the Department of Defense Birth and Infant Health Registry (Registry) team conducts surveillance of select reproductive health outcomes among military families. Data are compiled from the Military Health System Data Repository and Defense Manpower Data Center to define the Registry cohort and outcomes of interest. Outcomes are defined using ICD-9/ICD-10 and Current Procedural Terminology codes, and include: pregnancy outcomes (e.g., live births, losses), birth defects, preterm births, and male:female infant sex ratio. This report includes data from 2003-2014 on 1,304,406 infants among military families and 258,332 pregnancies among active duty women. Rates of common adverse infant and pregnancy outcomes were comparable to or lower than those in the general US population. These observations, along with prior Registry analyses, provide reassurance that military service is not independently associated with increased risks for select adverse reproductive health outcomes. The Registry's diverse research portfolio demonstrates its unique capabilities to answer a wide range of questions related to reproductive health. These data provide the military community with information to identify successes and areas for improvement in prevention and care.

  5. Electronic warehouse receipts registry as a step from paper to electronic warehouse receipts

    Directory of Open Access Journals (Sweden)

    Kovačević Vlado

    2016-01-01

    Full Text Available The aim of this paper is to determine the economic viability of the electronic warehouse receipt registry introduction, as a step toward electronic warehouse receipts. Both forms of warehouse receipt paper and electronic exist in practice, but paper warehouse receipts are more widespread. In this paper, the dematerialization process is analyzed in two steps. The first step is the dematerialization of warehouse receipt registry, with warehouse receipts still in paper form. The second step is the introduction of electronic warehouse receipts themselves. Dematerialization of warehouse receipts is more complex than that for financial securities, because of the individual characteristics of each warehouse receipt. As a consequence, electronic warehouse receipts are in place for only to a handful of commodities, namely cotton and a few grains. Nevertheless, the movement towards the electronic warehouse receipt, which began several decades ago with financial securities, is now taking hold in the agricultural sector. In this paper is analyzed Serbian electronic registry, since the Serbia is first country in EU with electronic warehouse receipts registry donated by FAO. Performed analysis shows the considerable impact of electronic warehouse receipts registry establishment on enhancing the security of the system of public warehouses, and on advancing the trade with warehouse receipt.

  6. Quality of record linkage in a highly automated cancer registry that relies on encrypted identity data

    Directory of Open Access Journals (Sweden)

    Schmidtmann, Irene

    2016-06-01

    Full Text Available Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, plain text data for these records were retrieved to generate a gold standard. Record linkage error frequencies in the cancer registry were determined by comparison of the results of the routine linkage with the gold standard. Error rates were projected to larger registries.Results: In the sample studied, the homonym error rate was 0.015%; the synonym error rate was 0.2%. The F-measure was 0.9921. Projection to larger databases indicated that for a realistic development the homonym error rate will be around 1%, the synonym error rate around 2%.Conclusion: Observed error rates are low. This shows that effective methods to standardize and improve the quality of the input data have been implemented. This is crucial to keep error rates low when the registry’s database grows. The planned inclusion of unique health insurance numbers is likely to further improve record linkage quality. Cancer registration entirely based on electronic notification of records can process large amounts of data with high quality of record linkage.

  7. Tools and data services registry: a community effort to document bioinformatics resources

    Science.gov (United States)

    Ison, Jon; Rapacki, Kristoffer; Ménager, Hervé; Kalaš, Matúš; Rydza, Emil; Chmura, Piotr; Anthon, Christian; Beard, Niall; Berka, Karel; Bolser, Dan; Booth, Tim; Bretaudeau, Anthony; Brezovsky, Jan; Casadio, Rita; Cesareni, Gianni; Coppens, Frederik; Cornell, Michael; Cuccuru, Gianmauro; Davidsen, Kristian; Vedova, Gianluca Della; Dogan, Tunca; Doppelt-Azeroual, Olivia; Emery, Laura; Gasteiger, Elisabeth; Gatter, Thomas; Goldberg, Tatyana; Grosjean, Marie; Grüning, Björn; Helmer-Citterich, Manuela; Ienasescu, Hans; Ioannidis, Vassilios; Jespersen, Martin Closter; Jimenez, Rafael; Juty, Nick; Juvan, Peter; Koch, Maximilian; Laibe, Camille; Li, Jing-Woei; Licata, Luana; Mareuil, Fabien; Mičetić, Ivan; Friborg, Rune Møllegaard; Moretti, Sebastien; Morris, Chris; Möller, Steffen; Nenadic, Aleksandra; Peterson, Hedi; Profiti, Giuseppe; Rice, Peter; Romano, Paolo; Roncaglia, Paola; Saidi, Rabie; Schafferhans, Andrea; Schwämmle, Veit; Smith, Callum; Sperotto, Maria Maddalena; Stockinger, Heinz; Vařeková, Radka Svobodová; Tosatto, Silvio C.E.; de la Torre, Victor; Uva, Paolo; Via, Allegra; Yachdav, Guy; Zambelli, Federico; Vriend, Gert; Rost, Burkhard; Parkinson, Helen; Løngreen, Peter; Brunak, Søren

    2016-01-01

    Life sciences are yielding huge data sets that underpin scientific discoveries fundamental to improvement in human health, agriculture and the environment. In support of these discoveries, a plethora of databases and tools are deployed, in technically complex and diverse implementations, across a spectrum of scientific disciplines. The corpus of documentation of these resources is fragmented across the Web, with much redundancy, and has lacked a common standard of information. The outcome is that scientists must often struggle to find, understand, compare and use the best resources for the task at hand. Here we present a community-driven curation effort, supported by ELIXIR—the European infrastructure for biological information—that aspires to a comprehensive and consistent registry of information about bioinformatics resources. The sustainable upkeep of this Tools and Data Services Registry is assured by a curation effort driven by and tailored to local needs, and shared amongst a network of engaged partners. As of November 2015, the registry includes 1785 resources, with depositions from 126 individual registrations including 52 institutional providers and 74 individuals. With community support, the registry can become a standard for dissemination of information about bioinformatics resources: we welcome everyone to join us in this common endeavour. The registry is freely available at https://bio.tools. PMID:26538599

  8. Evaluation of tumor registry validity in Samsung medical center radiation oncology department

    International Nuclear Information System (INIS)

    Park, Won; Huh, Seung Jae; Kim, Dae Yong; Shin, Seong Soo; Ahn, Yong Chan; Lim, Do Hoon; Kim, Seon Woo

    2004-01-01

    A tumor registry system for the patients treated by radiotherapy at Samsung Medical Center since the opening of a hospital at 1994 was employed. In this study, the tumor registry system was introduced and the validity of the tumor registration was analyzed. The tumor registry system was composed of three parts: patient demographic, diagnostic, and treatment information. All data were input in a screen using a mouse only. Among the 10,000 registered cases in the tumor registry system until Aug, 2002, 199 were randomly selected and their registration data were compared with the patients' medical records. Total input errors were detected in 15 cases (7.5%). There were 8 error items in the part relating to diagnostic information: tumor site 3, pathology 2, AJCC staging 2 and performance status 1. In the part relating to treatment information there were 9 mistaken items: combination treatment 4, the date of initial treatment 3 and radiation completeness 2. According to the assignment doctor, the error ratio was consequently variable. The doctors who did no double-checks showed higher errors than those that did (15.6%: 3.7%). Our tumor registry had errors within 2% for each item. Although the overall data quality was high, further improvement might be achieved through promoting sincerity, continuing training periodic validity tests and keeping double-checks. Also, some items associated with the hospital information system will be input automatically in the next step

  9. Statistical Process Control: A Quality Tool for a Venous Thromboembolic Disease Registry.

    Science.gov (United States)

    Posadas-Martinez, Maria Lourdes; Rojas, Liliana Paloma; Vazquez, Fernando Javier; De Quiros, Fernan Bernaldo; Waisman, Gabriel Dario; Giunta, Diego Hernan

    2016-01-01

    We aim to describe Statistical Control Process as a quality tool for the Institutional Registry of Venous Thromboembolic Disease (IRTD), a registry developed in a community-care tertiary hospital in Buenos Aires, Argentina. The IRTD is a prospective cohort. The process of data acquisition began with the creation of a computerized alert generated whenever physicians requested imaging or laboratory study to diagnose venous thromboembolism, which defined eligible patients. The process then followed a structured methodology for patient's inclusion, evaluation, and posterior data entry. To control this process, process performance indicators were designed to be measured monthly. These included the number of eligible patients, the number of included patients, median time to patient's evaluation, and percentage of patients lost to evaluation. Control charts were graphed for each indicator. The registry was evaluated in 93 months, where 25,757 patients were reported and 6,798 patients met inclusion criteria. The median time to evaluation was 20 hours (SD, 12) and 7.7% of the total was lost to evaluation. Each indicator presented trends over time, caused by structural changes and improvement cycles, and therefore the central limit suffered inflexions. Statistical process control through process performance indicators allowed us to control the performance of the registry over time to detect systematic problems. We postulate that this approach could be reproduced for other clinical registries.

  10. Upgraded national occupational dose registry system - implementation of Phase-II programme

    International Nuclear Information System (INIS)

    Sanaye, S.S.; Baburajan, Sujatha; Johnson, Seethal; Nalawade, S.K.; Tudu, S.C.; Khedekar, B.M.; Sapra, B.K.; Datta, D.

    2016-01-01

    National Occupational Dose Registry System (NODRS) of Bhabha Atomic Research Centre maintains and updates occupational dose data of all monitored radiation workers in the country. The registry was upgraded in 2008 by establishing networked NODRS system through which personnel monitoring labs at different nuclear installations were networked with main dose registry server using the departmental ANUNET and NPCNET facilities. This has facilitated online allotment of personal numbers, storing of biometric information as well as providing online dose information to respective Health Physics Units (HPUs). On the basis of operational experience of NODRS and its feedback from users, Phase-II program was designed, developed and implemented. The paper gives an overview of implementation of this program at various sites

  11. Nursing registries of educational actions for patients submitted to hip arthroplasty

    Directory of Open Access Journals (Sweden)

    Laiana Lauser Silveira

    2015-12-01

    Full Text Available A retrospective, descriptive study of quantitative approach, aimed to identify nursing registries of educational actions for patients submitted to hip arthroplasty. The investigation was conducted in a university hospital in the South of Brazil, with a sample of 112 records from admitted patients. Data were collected through a checklist in June of 2013, and statistically analyzed. The educational registry was present in 60 (53% records. Regarding the content, the post-surgery care 36 (53%, mobilization 23 (20,5% and bed exit 21 (18,8% were prevalent and were found in a total of 56 (50% records on the Nursing Evolution document. Although nursing registries present aspects related to patient’s education, better results could be obtained with the intervention operationalization, linked to nurse’s permanent education.

  12. [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.

  13. 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

    Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective epidemiol......Diagnostic histological and cytological specimens are routinely stored in pathology department archives. These biobanks are a valuable research resource for many diseases, particularly if they can be linked to high quality population-based health registries, allowing large retrospective...... epidemiological studies to be carried out. Such studies are of significant importance, for example in the search for novel prognostic and predictive biomarkers in the era of personalized medicine. Denmark has a wealth of highly-regarded population-based registries that are ideally suited to conduct this type...

  14. Intergenerational effects of endocrine-disrupting compounds: a review of the Michigan polybrominated biphenyl registry.

    Science.gov (United States)

    Curtis, Sarah W; Conneely, Karen N; Marder, Mary E; Terrell, Metrecia L; Marcus, Michele; Smith, Alicia K

    2018-06-11

    Endocrine-disrupting compounds (EDCs) are a broad class of chemicals present in many residential products that can disrupt hormone signaling and cause health problems in humans. Multigenerational cohorts, like the Michigan polybrominated biphenyl registry, are ideal for studying the effects of intergenerational exposure. Registry participants report hormone-related health problems, particularly in those exposed before puberty or those in the second generation exposed through placental transfer or breastfeeding. However, more research is needed to determine how EDCs cause health problems and the mechanisms underlying intergenerational exposure. Utilizing existing data in this registry, along with genetic and epigenetic approaches, could provide insight to how EDCs cause human disease and help to determine the risk to exposed populations and future generations.

  15. Agile Model Driven Development of Electronic Health Record-Based Specialty Population Registries

    Science.gov (United States)

    Kannan, Vaishnavi; Fish, Jason C.; Willett, DuWayne L.

    2018-01-01

    The transformation of the American healthcare payment system from fee-for-service to value-based care increasingly makes it valuable to develop patient registries for specialized populations, to better assess healthcare quality and costs. Recent widespread adoption of Electronic Health Records (EHRs) in the U.S. now makes possible construction of EHR-based specialty registry data collection tools and reports, previously unfeasible using manual chart abstraction. But the complexities of specialty registry EHR tools and measures, along with the variety of stakeholders involved, can result in misunderstood requirements and frequent product change requests, as users first experience the tools in their actual clinical workflows. Such requirements churn could easily stall progress in specialty registry rollout. Modeling a system’s requirements and solution design can be a powerful way to remove ambiguities, facilitate shared understanding, and help evolve a design to meet newly-discovered needs. “Agile Modeling” retains these values while avoiding excessive unused up-front modeling in favor of iterative incremental modeling. Using Agile Modeling principles and practices, in calendar year 2015 one institution developed 58 EHR-based specialty registries, with 111 new data collection tools, supporting 134 clinical process and outcome measures, and enrolling over 16,000 patients. The subset of UML and non-UML models found most consistently useful in designing, building, and iteratively evolving EHR-based specialty registries included User Stories, Domain Models, Use Case Diagrams, Decision Trees, Graphical User Interface Storyboards, Use Case text descriptions, and Solution Class Diagrams. PMID:29750222

  16. RSA and registries: the quest for phased introduction of new implants.

    Science.gov (United States)

    Nelissen, Rob G H H; Pijls, Bart G; Kärrholm, Johan; Malchau, Henrik; Nieuwenhuijse, Marc J; Valstar, Edward R

    2011-12-21

    Although the overall survival of knee and hip prostheses at ten years averages 90%, recent problems with several hip and knee prostheses have illustrated that the orthopaedic community, industry, and regulators can still further improve patient safety. Given the early predictive properties of roentgen stereophotogrammetric analysis (RSA) and the meticulous follow-up of national joint registries, these two methods are ideal tools for such a phased clinical introduction. In this paper, we elaborate on the predictive power of RSA within a two-year follow-up after arthroplasty and its relationship to national joint registries. The association between RSA prosthesis-migration data and registry data is evaluated. The five-year rate of revision of RSA-tested total knee replacements was compared with that of non-RSA-tested total knee replacements. Data were extracted from the published results of the national joint registries of Sweden, Australia, and New Zealand. There was a 22% to 35% reduction in the number of revisions of RSA-tested total knee replacements as compared with non-RSA-tested total knee replacements in the national joint registries. Assuming that the total cost of total knee arthroplasty is $37,000 in the United States, a 22% to 35% reduction in the number of revisions (currently close to 55,000 annually) could lead to an estimated annual savings of over $400 million to the health-care system. The phased clinical introduction of new prostheses with two-year RSA results as a qualitative tool could lead to better patient care and could reduce the costs associated with revision total knee arthroplasty. Follow-up in registries is necessary to substantiate these results and to improve post-market surveillance.

  17. Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

    Directory of Open Access Journals (Sweden)

    Sanson-Fisher Rob

    2011-01-01

    Full Text Available Abstract Background Recruiting large and representative samples of adolescent and young adult (AYA cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56% received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8% refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32 completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.

  18. Walking the talk: the need for a trial registry for development interventions

    DEFF Research Database (Denmark)

    Rasmussen, Ole Dahl; Malchow-Møller, Nikolaj; Andersen, Thomas Barnebeck

    2011-01-01

    Recent advances in the use of randomised control trials to evaluate the effect of development interventions promise to enhance our knowledge of what works and why. A core argument supporting randomised studies is the claim that they have high internal validity. The authors argue that this claim...... is weak as long as a trial registry of development interventions is not in place. Without a trial registry, the possibilities for data mining, created by analyses of multiple outcomes and subgroups, undermine internal validity. Drawing on experience from evidence-based medicine and recent examples from...

  19. The central registries of occupational and medical exposure in the Czech Republic

    International Nuclear Information System (INIS)

    Petrova, K.; Prouza, Z.

    1996-01-01

    This paper is intended to provide some insight into the recent situation in the Czech Republic concerning the registration and evaluation of occupational and medical radiation exposures. Since 1993 the creation of the Central (national) Registries of Occupational (CROE) and Medical Exposure (CRME) has been started. One of the main functions of these registries will be to provide statistics to guide policy making on a national basis. Authors give more detailed information on the structure of creating programs and discuss some actual arising problems. (author)

  20. The central registries of occupational and medical exposure in the Czech republic

    International Nuclear Information System (INIS)

    Petrova, K.; Prouza, Z.

    1995-01-01

    This paper is intended to provide some insight into the recent situation in the Czech Republic concerning the registration and evaluation of occupational and medical radiation exposures. Since 1993 the creation of the Central (national) Registries of Occupational (CROE) and Medical Exposure (CRME) has been started. One of the main functions of these registries will be to provide statistics to guide policy making on a national basis. Authors pick up their presentation in previous national conference in Jachymov last year and continue with further detailed information on the structure of creating programs and discuss some actual arising problems (author). 3 tabs., 5 refs

  1. Correcting for catchment area nonresidency in studies based on tumor-registry data

    International Nuclear Information System (INIS)

    Sposto, R.; Preston, D.L.

    1993-05-01

    We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

  2. Cartilage status in FAI patients - results from the Danish Hip Arthroscopy Registry (DHAR)

    DEFF Research Database (Denmark)

    Lund, Bent; Nielsen, Torsten Grønbech; Lind, Martin

    2017-01-01

    management is not fully elucidated. This study from the Danish Hip Arthroscopy Registry (DHAR) will try to show data on the cartilage status from a large cohort. Data from a national registry potentially represent large amounts of population-based epidemiological information from multiple centres...... severe acetabular cartilage injury. DISCUSSION: The majority of patients with femoroacetabular impingement (FAI) undergoing hip arthroscopy have significant cartilage changes at the time of surgery primarily at the acetabulum and to a lesser degree at the femoral head. During FAI surgery the majority...

  3. The central registries of occupational and medical exposure in the Czech republic

    Energy Technology Data Exchange (ETDEWEB)

    Petrova, K [National Inst. of Radiation Protection, 10000 Prague (Czech Republic); Prouza, Z [State Office of Nuclear Safety, 12029 Prague (Czech Republic)

    1996-12-31

    This paper is intended to provide some insight into the recent situation in the Czech Republic concerning the registration and evaluation of occupational and medical radiation exposures. Since 1993 the creation of the Central (national) Registries of Occupational (CROE) and Medical Exposure (CRME) has been started. One of the main functions of these registries will be to provide statistics to guide policy making on a national basis. Authors pick up their presentation in previous national conference in Jachymov last year and continue with further detailed information on the structure of creating programs and discuss some actual arising problems (author). 3 tabs., 5 refs.

  4. 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.

  5. Temporal Trends in the Risk Profile of Patients Undergoing Outpatient Percutaneous Coronary Intervention: A Report from the National Cardiovascular Data Registry's CathPCI Registry.

    Science.gov (United States)

    Vora, Amit N; Dai, Dadi; Gurm, Hitinder; Amin, Amit P; Messenger, John C; Mahmud, Ehtisham; Mauri, Laura; Wang, Tracy Y; Roe, Matthew T; Curtis, Jeptha; Patel, Manesh R; Dauerman, Harold L; Peterson, Eric D; Rao, Sunil V

    2016-03-01

    Because of recent changes in criteria for coverage for inpatient hospital stays, most nonacute percutaneous coronary intervention (PCI) procedures are reimbursed on an outpatient basis regardless of underlying patient risk. Downstream effects of these changes on the risk profile of patients undergoing outpatient PCI have not been evaluated. Using the American College of Cardiology National Cardiovascular Data Registry's CathPCI Registry, we assessed temporal trends in risk profiles and rates of hospital admission among 999 279 patients undergoing PCI qualifying for outpatient reimbursement. We estimated mortality and bleeding risk using validated models from the registry. From 2009 to 2014, the proportion of outpatients not admitted to a hospital after PCI increased from 32.8% to 66.3% (Prisk for predicted mortality increased significantly from 17.0% to 19.8% during the study period (Prisk for mortality. Among patients undergoing PCI procedures that qualify for outpatient reimbursement, there has been a temporal decrease in postprocedure hospital admission. Concomitantly, the proportion of these outpatients at high risk for mortality has significantly increased over time. These data suggest that current reimbursement classification could be improved by incorporating patient risk to appropriately match the necessary resources to the needed level of care. © 2016 American Heart Association, Inc.

  6. Record linkage between hospital discharges and mortality registries for motor neuron disease case ascertainment for the Spanish National Rare Diseases Registry.

    Science.gov (United States)

    Ruiz, Elena; Ramalle-Gómara, Enrique; Quiñones, Carmen

    2014-06-01

    Our objective was to analyse the coverage of hospital discharge data and the mortality registry (MR) of La Rioja to ascertain motor neuron disease (MND) cases to be included in the Spanish National Rare Diseases Registry. MND cases that occurred in La Rioja during the period 1996-2011 were selected from hospital discharge data and the MR by means of the International Classification of Diseases. Review of the medical histories was carried out to confirm the causes of death reported. Characteristics of the population with MND were analysed. A total of 133 patients with MND were detected in La Rioja during the period 1996-2011; 30.1% were only recorded in the hospital discharges data, 12.0% only in the MR, and 57.9% were recorded by both databases. Medical records revealed a miscoding of patients who had been diagnosed with progressive supranuclear palsy but were recorded in the MR with an MND code. In conclusion, the hospital discharges data and the MR appear to be complementary and are valuable databases for the Spanish National Rare Diseases Registry when MNDs are properly codified. Nevertheless, it would be advisable to corroborate the validity of the MR as data source since the miscoding of progressive supranuclear palsy has been corrected.

  7. Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data.

    Science.gov (United States)

    Chaturvedi, Meesha; Vaitheeswaran, K; Satishkumar, K; Das, Priyanka; Stephen, S; Nandakumar, A

    2015-12-01

    The trends observed in cancer breast among Indian women are an indication of effect of changing lifestyle in population. To draw an appropriate inference regarding the trends of a particular type of cancer in a country, it is imperative to glance at the reliable data collected by Population Based Cancer Registries over a period of time. To give an insight of changing trends of breast cancer which have taken place over a period of time among women in Cancer Registries of India. Breast Cancer trends for invasive breast cancer in women in Indian Registries have varied during the selected period. Occurrence of breast cancers has also shown geographical variation in India. This data was collected by means of a 'Standard Core Proforma' designed by NCRP conforming to the data fields as suggested by International norms. The Proforma was filled by trained Registry workers based on interview/ hospital medical records/ supplementing data by inputs from treating surgeons/radiation oncologists/involved physicians/pathologists. The contents of the Proforma are entered into specifically created software and transmitted electronically to the coordinating center at Bangalore. The registries contributing to more number of years of data are called as older registries, while other recently established registries are called newer registries. While there has been an increase recorded in breast cancer in most of the registries, some of them have recorded an insignificant increase. Comparison of Age Adjusted Rates (AARs) among Indian Registries has been carried out after which trends observed in populations covered by Indian Registries are depicted. A variation in broad age groups of females and the proneness of females developing breast cancer over the period 1982 to 2010 has been shown. Comparisons of Indian registries with International counterparts have also been carried out. There are marked changes in incidence rates of cancer breast which have occurred in respective registries in a

  8. [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.

  9. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

    Directory of Open Access Journals (Sweden)

    Len Woodward

    2016-11-01

    Full Text Available Abstract Background Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease’s natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS, the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183. Results The aHUS Registry Scientific Advisory Board (SAB invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: “What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?”. This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. Conclusion This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement

  10. 77 FR 42317 - Establish a Patient-Based Registry To Evaluate the Association of Gadolinium Based Contrast...

    Science.gov (United States)

    2012-07-18

    ... Quality Assurance (QA) registry of patients with renal failure who received GBCAs as the basis for a... of the development of a patient-based registry to evaluate the association of gadolinium based..., and a copy to Ira Krefting, Center for Drug Evaluation and Research, Division of Medical Imaging...

  11. Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry

    Science.gov (United States)

    Daniels, Amy M.; Rosenberg, Rebecca E.; Anderson, Connie; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

    2012-01-01

    Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's…

  12. Performance of Different Diagnostic Criteria for Familial Mediterranean Fever in Children with Periodic Fevers : Results from a Multicenter International Registry

    NARCIS (Netherlands)

    Demirkaya, Erkan; Saglam, Celal; Turker, Turker; Koné-Paut, Isabelle; Woo, Pat; Doglio, Matteo; Amaryan, Gayane; Frenkel, Joost; Uziel, Yosef; Insalaco, Antonella; Cantarini, Luca; Hofer, Michael; Boiu, Sorina; Duzova, Ali; Modesto, Consuelo; Bryant, Annette; Rigante, Donato; Papadopoulou-Alataki, Efimia; Guillaume-Czitrom, Severine; Kuemmerle-Deschner, Jasmine; Neven, Bénédicte; Lachmann, Helen; Martini, Alberto; Ruperto, Nicolino; Gattorno, Marco; Ozen, Seza

    2015-01-01

    OBJECTIVE: Our aims were to validate the pediatric diagnostic criteria in a large international registry and to compare them with the performance of previous criteria for the diagnosis of familial Mediterranean fever (FMF). METHODS: Pediatric patients with FMF from the Eurofever registry were used

  13. The Changing Landscape for Stroke Prevention in AF: Findings From the GLORIA-AF Registry Phase 2

    NARCIS (Netherlands)

    Huisman, M.V.; Rothman, K.J.; Paquette, M.; Teutsch, C.; Diener, H.C.; Dubner, S.J.; Halperin, J.L.; Ma, C.S.; Zint, K.; Elsaesser, A.; Bartels, D.B.; Lip, G.Y.; Hemels, M.E.; et al.,

    2017-01-01

    BACKGROUND: GLORIA-AF (Global Registry on Long-Term Oral Antithrombotic Treatment in Patients with Atrial Fibrillation) is a prospective, global registry program describing antithrombotic treatment patterns in patients with newly diagnosed nonvalvular atrial fibrillation at risk of stroke. Phase 2

  14. The changing trends and outcomes in renal replacement therapy: data from the ERA-EDTA Registry

    NARCIS (Netherlands)

    Pippias, Maria; Jager, Kitty J.; Kramer, Anneke; Leivestad, Torbjørn; Sánchez, Manuel Benítez; Caskey, Fergus J.; Collart, Frederic; Couchoud, Cécile; Dekker, Friedo W.; Finne, Patrik; Fouque, Denis; Heaf, James G.; Hemmelder, Marc H.; Kramar, Reinhard; de Meester, Johan; Noordzij, Marlies; Palsson, Runolfur; Pascual, Julio; Zurriaga, Oscar; Wanner, Christoph; Stel, Vianda S.

    2016-01-01

    This study examines the time trends in incidence, prevalence, patient and kidney allograft survival and causes of death (COD) in patients receiving renal replacement therapy (RRT) in Europe. Eighteen national or regional renal registries providing data to the European Renal Association-European

  15. Annual report of the United States transuranium and uranium registries, October 1, 1988--September 30, 1989

    International Nuclear Information System (INIS)

    Kathren, R.L.; Swint, M.J.; Dietert, S.E.

    1990-04-01

    This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1988 through September 30, 1989. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in man. The emphasis of the Transuranium Registry was directed toward evaluation of six whole body donations. In the five cases whose exposure was through inhalation, approximately half of the total body content of Pu-239 + 240 and a third of the Am-241 was found in the respiratory tract, suggesting that these nuclides are more avidly retained than predicted by the current model of the International Commission on Radiological Protection. A significant fraction of these nuclides is found in soft tissues other than liver, and an uptake fraction of 0.2 is proposed for muscle, with a residence half-time of 10 years. Studies of these and routine autopsy cases indicate that more than 90% of the total respiratory tract plutonium or americium is in the lungs, with the remainder in the lymph nodes, and that a greater fraction is found in the lungs of smokers relative to the lymph nodes. Primary activities of the Uranium Registry centered around the acquisition of a whole body donation from a woman who had received an injection of colloidal thorium dioxide some 38 years prior to death

  16. The Importance of Registries in the Postmarketing Surveillance of Surgical Meshes.

    Science.gov (United States)

    Köckerling, Ferdinand; Simon, Thomas; Hukauf, Martin; Hellinger, Achim; Fortelny, Rene; Reinpold, Wolfgang; Bittner, Reinhard

    2017-06-07

    To assess the role of registries in the postmarketing surveillance of surgical meshes. To date, surgical meshes are classified as group II medical devices. Class II devices do not require premarket clearance by clinical studies. Ethicon initiated a voluntary market withdrawal of Physiomesh for laparoscopic use after an analysis of unpublished data from the 2 large independent hernia registries-Herniamed German Registry and Danish Hernia Database. This paper now presents the relevant data from the Herniamed Registry. The present analysis compares the prospective perioperative and 1-year follow-up data collected for all patients with incisional hernia who had undergone elective laparoscopic intraperitoneal onlay mesh repair either with Physiomesh (n = 1380) or with other meshes recommended in the guidelines (n = 3834). Patients with Physiomesh repair had a markedly higher recurrence rate compared with the other recommended meshes (12.0% vs 5.0%; P manufacturing company must be taken into account.This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. http://creativecommons.org/licenses/by-nc-nd/4.0.

  17. 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...

  18. Epidemiology of multiple congenital anomalies in Europe: A EUROCAT population-based registry study

    DEFF Research Database (Denmark)

    Calzolari, Elisa; Barisic, Ingeborg; Loane, Maria

    2014-01-01

    BACKGROUND: This study describes the prevalence, associated anomalies, and demographic characteristics of cases of multiple congenital anomalies (MCA) in 19 population-based European registries (EUROCAT) covering 959,446 births in 2004 and 2010. METHODS: EUROCAT implemented a computer algorithm f...

  19. Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies

    DEFF Research Database (Denmark)

    Loane, Maria; Dolk, Helen; Garne, Ester

    2011-01-01

    The European Surveillance of Congenital Anomalies (EUROCAT) network of population-based congenital anomaly registries is an important source of epidemiologic information on congenital anomalies in Europe covering live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for...

  20. The Entity Registry System: Publishing and Consuming Linked Data in Poorly Connected Environments

    NARCIS (Netherlands)

    Guéret, Christophe; Cudré-Mauroux, Philippe

    2014-01-01

    Sixty-five percent of the world's population is deprived of ICT-enhanced data-sharing because of poor access to digital technology. The ExaScale Infolab and Data Archiving and Networked Services (DANS) have designed a new framework, the "Entity Registry System" (ERS), and produced a reference

  1. Information Sharing and Credit Rationing : Evidence from the Introduction of a Public Credit Registry

    NARCIS (Netherlands)

    Cheng, X.; Degryse, H.A.

    2010-01-01

    We provide the first evidence on how the introduction of information sharing via a public credit registry affects banks’ lending decisions. We employ a unique dataset containing detailed information on credit card applications and decisions from one of the leading banks in China. While we do not

  2. #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...

  3. The design and rationale of the primary angioplasty registry of Kerala

    Directory of Open Access Journals (Sweden)

    Jabir A

    2017-11-01

    Conclusions: The primary angioplasty registry of Kerala would help analyze the quality and outcomes of primary PCI services in Kerala, thereby yielding insights that can help limit unacceptable procedural variations in the performance of primary PCI. Identifying deviations from guideline based therapies can form the basis of quality improvement programs, which in turn will enable hospitals to achieve better patient outcomes.

  4. Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

    International Nuclear Information System (INIS)

    Parkin, D.M.; Black, R.J.; Kramarova, E.; Clayton, D.

    1997-01-01

    The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs

  5. 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.

  6. Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

    Energy Technology Data Exchange (ETDEWEB)

    Parkin, D M; Black, R J; Kramarova, E [International Agency for Research on Cancer, Lyon (France); Clayton, D [University of Cambridge, Cambridge (United Kingdom)

    1997-09-01

    The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs.

  7. 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.

  8. Occurance of head and neck cancers at the Nairobi Cancer Registry ...

    African Journals Online (AJOL)

    Occurance of head and neck cancers at the Nairobi Cancer Registry in Kenya 2000-2002. AK Limo, A Rugutt-Korir, JO Gichana, EA Dimba, ML Chindia, GZ Mutuma. Abstract. No Abstract. African Journal of Oral Health Sciences Vol. 5 (1) 2007: pp. 2-4. Full Text: EMAIL FULL TEXT EMAIL FULL TEXT · DOWNLOAD FULL ...

  9. Establishment of Electronic Chart-based Stroke Registry System in a Medical System in Taiwan

    Directory of Open Access Journals (Sweden)

    Tsong-Hai Lee

    2011-08-01

    Full Text Available To establish a prospective, real-time, self-sustainable stroke registry system, we incorporated a registry with an electronic chart to create an electronic chart-based stroke registry system in November 2006. The International Classification of Diseases Ninth Revision code (430–437 was used to auto-enroll stroke patients admitted to neurology departments. Clinical information was written by doctors, nursing information was recorded by nurses, and basic patient information was entered by administrative departments. Numerical data and the date and time of any studies were auto-downloaded from the hospital computer. In total, 212 items were auto-downloaded, including basic patient information, laboratory blood test and examination results, and the date and time of imaging and special intervention. The stroke scales (121 items, National Institutes of Health Stroke Scale, Barthel index, and modified Rankin scale were designed to be auto-adjusted to reduce incompatibility. The 95 items with pull-down options were used to specify the contents. This registry system can be time-, labor- and money-saving with secured data accuracy.

  10. 77 FR 16471 - Pipeline Safety: Implementation of the National Registry of Pipeline and Liquefied Natural Gas...

    Science.gov (United States)

    2012-03-21

    ... Registry of Pipeline and Liquefied Natural Gas Operators AGENCY: Pipeline and Hazardous Materials Safety... DEPARTMENT OF TRANSPORTATION Pipeline and Hazardous Materials Safety Administration 49 CFR Parts... Register (75 FR 72878) titled: ``Pipeline Safety: Updates to Pipeline and Liquefied Natural Gas Reporting...

  11. Development of a "Myeloma Risk Score" using a population-based registry on paraproteinemia and myeloma

    NARCIS (Netherlands)

    Ong, F; Hermans, J; Noordijk, E M; De Kieviet, W; Seelen, P J; Wijermans, P W; Kluin-Nelemans, J C

    1997-01-01

    Diagnostic systems for monoclonal gammopathies use bone marrow and X-ray examinations to exclude multiple myeloma (MM). Data from a population-based registry of unselected patients with paraproteinemia indicate that these tests are often done only when MM is suspected. We used 441 randomly selected

  12. Antithrombotic Treatment of Splanchnic Vein Thrombosis : Results of an International Registry

    NARCIS (Netherlands)

    Ageno, Walter; Riva, Nicoletta; Bang, Soo-Mee; Sartori, Maria Teresa; Grandone, Elvira; Beyer-Westendorf, Jan; Barillari, Giovanni; Di Minno, Matteo N. D.; Duce, Rita; Malato, Alessandra; Santoro, Rita; Poli, Daniela; Verhamme, Peter; Martinelli, Ida; Kamphuisen, Pieter W.; Alatri, Adriano; Oh, Doyeun; Amico, Elbio D.; Schulman, Sam; Dentali, Francesco

    2012-01-01

    Background: Treatment of splanchnic vein thrombosis (SVT) is a clinical challenge due to heterogeneity of clinical presentations, increased bleeding risk and lack of evidences from clinical trials. We carried out an international registry aimed to describe current treatment strategies and factors

  13. Females with Fabry disease frequently have major organ involvement: lessons from the Fabry Registry

    DEFF Research Database (Denmark)

    Wilcox, W.R.; Oliveira, J.P.; Hopkin, R.J.

    2008-01-01

    been made to enroll all FD females, regardless of symptomology. Of the 1077 enrolled females in the Registry, 69.4% had symptoms and signs of FD. The median age at symptom onset among females was 13 years, and even though 84.1% had a positive family history, the diagnosis was not made until a median...

  14. Temporal disease trajectories condensed from population-wide registry data covering 6.2 million patients

    DEFF Research Database (Denmark)

    Jensen, Anders Boeck; Moseley, Pope; Oprea, Tudor

    2014-01-01

    . We use the entire spectrum of diseases and convert 14.9 years of registry data on 6.2 million patients into 1,171 significant trajectories. We group these into patterns centred on a small number of key diagnoses such as chronic obstructive pulmonary disease (COPD) and gout, which are central...

  15. Validity of rheumatoid arthritis diagnoses in the Danish National Patient Registry

    DEFF Research Database (Denmark)

    Pedersen, M.; Klarlund, M.; Jacobsen, S.

    2004-01-01

    to RA satisfying the ACR 1987 classification criteria was estimated to 26%. Our conclusion is that with careful attention to the limitations in the data, discharge diagnoses for patients with records of RA in the Danish NPR can be used for epidemiological research purposes; however, our findings prompt...... general carefulness when using non-audited registries for research in RA....

  16. 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.

  17. A nationwide registry-based cohort study of incidence of tonsillectomy in Denmark, 1991-2012

    DEFF Research Database (Denmark)

    Juul, Marie Louise; Rasmussen, Eva Rye; Rasmussen, Stig Hebbelstrup Rye

    2018-01-01

    OBJECTIVE: To update tonsillectomy incidence rates in Denmark and identify whether the incidence rates vary between geographical areas in the country during the period 1991-2012. DESIGN: This was a retrospective nationwide cohort study using data from the comprehensive Danish patient registries. ...

  18. The patient registry: a high-impact tool for real world evidence

    Directory of Open Access Journals (Sweden)

    BarickUttam, MohantyRituraj, GowdaArun

    2014-11-01

    Full Text Available Background: In this world of seemingly infinite data across domains, one strives to acquire better tools and methodologies to fully exploit available data. This process begins with meticulous planning to gather relevant information and continues until there is an output in the form of credible evidence. The ability to generate real-world evidence would take such a process to new level: the factors that influence these processes under real-world conditions are varied, unpredictable, and unregulated. Results obtained in highly regulated or controlled conditions are universally accepted and sought after for regulatory approvals, but performance indicators in the real world will set the tone for the future. Hence, the demands for very reliant and robust tools and mechanisms for gathering evidence are all the more prominent and necessary. Patient registries fill this gap and stand tall among the various tools that could deliver the desired end results with acceptable accuracy. Over the years, pharmaceutical companies, along with policymakers and other stakeholders, have been actively involved in the development of such registries. Aims: Here we provide an overview of the usefulness of registries for the various stakeholders in healthcare in terms of conduct, approach, and barriers to initiating such studies. Conclusion: One of the impediments for the wider appeal and utility of registries is low awareness among the public and policymakers. Incorporating them as a part of the standard global healthcare system would involve setting up a regulatory framework.

  19. 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....

  20. Excellent survival after liver transplantation for isolated polycystic liver disease : an European Liver Transplant Registry study

    NARCIS (Netherlands)

    van Keimpema, Loes; Nevens, Frederik; Adam, Rene; Porte, Robert J.; Fikatas, Panagiotis; Becker, Thomas; Kirkegaard, Preben; Metselaar, Herold J.; Drenth, Joost P. H.

    2011-01-01

    Patients with end-stage isolated polycystic liver disease (PCLD) suffer from incapacitating symptoms because of very large liver volumes. Liver transplantation (LT) is the only curative option. This study assesses the feasibility of LT in PCLD. We used the European Liver Transplant Registry (ELTR)

  1. Predictive value of acute coronary syndrome discharge diagnoses in the Danish national patioent registry

    DEFF Research Database (Denmark)

    Joensen, Albert Marni; Jensen, Majken K.; Overvad, Kim

    Background: Updated data on the predictive value of acute coronary syndrome (ACS) diagnoses, including unstable angina pectoris, myocardial infarction and cardiac arrest, in hospital discharge registries are sparse. Design: Validation study. Methods: All first-time ACS diagnoses in the Danish...

  2. Leukaemia and occupation: a New Zealand Cancer Registry-based case-control Study.

    NARCIS (Netherlands)

    McLean, D.; 't Mannetje, A.; Dryson, E.; Walls, C.; McKenzie, F.; Maule, M.; Cheng, S.; Cunningham, C.; Kromhout, H.; Boffetta, P.; Blair, A.; Pearce, N.

    2009-01-01

    BACKGROUND: To examine the association between occupation and leukaemia. METHODS: We interviewed 225 cases (aged 20-75 years) notified to the New Zealand Cancer Registry during 2003-04, and 471 controls randomly selected from the Electoral Roll collecting demographic details, information on

  3. Adoption of the Hash algorithm in a conceptual model for the civil registry of Ecuador

    Science.gov (United States)

    Toapanta, Moisés; Mafla, Enrique; Orizaga, Antonio

    2018-04-01

    The Hash security algorithm was analyzed in order to mitigate information security in a distributed architecture. The objective of this research is to develop a prototype for the Adoption of the algorithm Hash in a conceptual model for the Civil Registry of Ecuador. The deductive method was used in order to analyze the published articles that have a direct relation with the research project "Algorithms and Security Protocols for the Civil Registry of Ecuador" and articles related to the Hash security algorithm. It resulted from this research: That the SHA-1 security algorithm is appropriate for use in Ecuador's civil registry; we adopted the SHA-1 algorithm used in the flowchart technique and finally we obtained the adoption of the hash algorithm in a conceptual model. It is concluded that from the comparison of the DM5 and SHA-1 algorithm, it is suggested that in the case of an implementation, the SHA-1 algorithm is taken due to the amount of information and data available from the Civil Registry of Ecuador; It is determined that the SHA-1 algorithm that was defined using the flowchart technique can be modified according to the requirements of each institution; the model for adopting the hash algorithm in a conceptual model is a prototype that can be modified according to all the actors that make up each organization.

  4. Positive predictive value of infective endocarditis in the Danish National Patient Registry: a validation study.

    Science.gov (United States)

    Østergaard, Lauge; Adelborg, Kasper; Sundbøll, Jens; Pedersen, Lars; Loldrup Fosbøl, Emil; Schmidt, Morten

    2018-05-30

    The positive predictive value of an infective endocarditis diagnosis is approximately 80% in the Danish National Patient Registry. However, since infective endocarditis is a heterogeneous disease implying long-term intravenous treatment, we hypothesiszed that the positive predictive value varies by length of hospital stay. A total of 100 patients with first-time infective endocarditis in the Danish National Patient Registry were identified from January 2010 - December 2012 at the University hospital of Aarhus and regional hospitals of Herning and Randers. Medical records were reviewed. We calculated the positive predictive value according to admission length, and separately for patients with a cardiac implantable electronic device and a prosthetic heart valve using the Wilson score method. Among the 92 medical records available for review, the majority of the patients had admission length ⩾2 weeks. The positive predictive value increased with length of admission. In patients with admission length value was 65% while it was 90% for admission length ⩾2 weeks. The positive predictive value was 81% for patients with a cardiac implantable electronic device and 87% for patients with a prosthetic valve. The positive predictive value of the infective endocarditis diagnosis in the Danish National Patient Registry is high for patients with admission length ⩾2 weeks. Using this algorithm, the Danish National Patient Registry provides a valid source for identifying infective endocarditis for research.

  5. Child Abuse and Neglect United States Army U.S. Army Central Registry (1989-1996)

    Science.gov (United States)

    1998-03-31

    This report is an analysis of the child abuse and neglect cases that have been recorded in the Army Central Registry between 1989-1996. The following...were 30,551 initial substantiated cases of child abuse and neglect, or an average of about 3,80 cases per year. There were 2,336 subsequent incidents

  6. Where the Semantic Web and Web 2.0 Meet Format Risk Management: P2 Registry

    Directory of Open Access Journals (Sweden)

    David Tarrant

    2011-03-01

    Full Text Available The Web is increasingly becoming a platform for linked data. This means making connections and adding value to data on the Web. As more data becomes openly available and more people are able to use the data, it becomes more powerful. An example is file format registries and the evaluation of format risks. Here the requirement for information is now greater than the effort that any single institution can put into gathering and collating this information. Recognising that more is better, the creators of PRONOM, JHOVE, GDFR and others are joining to lead a new initiative: the Unified Digital Format Registry. Ahead of this effort, a new RDF-based framework for structuring and facilitating file format data from multiple sources, including PRONOM, has demonstrated it is able to produce more links, and thus provide more answers to digital preservation questions - about format risks, applications, viewers and transformations - than the native data alone. This paper will describe this registry, P2, and its services, show how it can be used, and provide examples where it delivers more answers than the contributing resources. The P2 Registry is a reference platform to allow and encourage publication of preservation data, and also an examplar of what can be achieved if more data is published openly online as simple machine-readable documents. This approach calls for the active participation of the digital preservation community to contribute data by simply publishing it openly on the Web as linked data.

  7. Svelte Integrated Delivery System Performance Examined Through Diagnostic Catheter Delivery : The SPEED Registry

    NARCIS (Netherlands)

    Khattab, Ahmed A.; Nijhoff, Freek; Schofer, Joachim; Berland, Jacques; Meier, Bernhard; Nietlispach, Fabian; Agostoni, Pierfrancesco; Brucks, Steffen; Stella, Pieter

    2015-01-01

    Aims: The multi-center SPEED registry evaluated the procedural success and in-hospital clinical outcomes of direct stenting with the Svelte 'all-in-one' coronary stent Integrated Delivery System (IDS) through diagnostic catheters to identify the clinical indications for which this approach is

  8. Should we all go to the PROM? The first two years of the British Spine Registry.

    Science.gov (United States)

    Breakwell, L M; Cole, A A; Birch, N; Heywood, C

    2015-07-01

    The effective capture of outcome measures in the healthcare setting can be traced back to Florence Nightingale's investigation of the in-patient mortality of soldiers wounded in the Crimean war in the 1850s. Only relatively recently has the formalised collection of outcomes data into Registries been recognised as valuable in itself. With the advent of surgeon league tables and a move towards value based health care, individuals are being driven to collect, store and interpret data. Following the success of the National Joint Registry, the British Association of Spine Surgeons instituted the British Spine Registry. Since its launch in 2012, over 650 users representing the whole surgical team have registered and during this time, more than 27 000 patients have been entered onto the database. There has been significant publicity regarding the collection of outcome measures after surgery, including patient-reported scores. Over 12 000 forms have been directly entered by patients themselves, with many more entered by the surgical teams. Questions abound: who should have access to the data produced by the Registry and how should they use it? How should the results be reported and in what forum? ©2015 The British Editorial Society of Bone & Joint Surgery.

  9. Poor agreement between data from the National Patient Registry and the Danish Patient Insurance Association

    DEFF Research Database (Denmark)

    Majholm, Birgitte; Bartholdy, Jens; Christoffersen, Jens Krogh

    2012-01-01

    Septic arthritis after knee arthroscopy requires in-patient treatment and should thus be reported to the National Patient Registry (NPR). It also meets the requirements for financial compensation if claimed to the Danish Patient Insurance Association (DPIA). The aim of this study was to assess data...

  10. Using prescription registries to define continuous drug use: how to fill gaps between prescriptions

    DEFF Research Database (Denmark)

    Nielsen, Lars Hougaard; Løkkegaard, Ellen; Andreasen, Anne Helms

    2008-01-01

    Pharmacoepidemiological studies often use prescription registries to assess patients' drug episodes. The databases usually provide information on the date of the redemption of the prescription as well as on the dispensed amount, and this allows us to define episodes of drug use. However, when...... that the retrospective exposure definition introduces an artificially protective effect of HT....

  11. Using an International Clinical Registry of Regional Anesthesia to Identify Targets for Quality Improvement

    Science.gov (United States)

    Sites, Brian D.; Barrington, Michael J.; Davis, Matthew

    2014-01-01

    Background Despite the widespread use of regional anesthesia, limited information on clinical performance exists. Institutions, therefore, have little knowledge of how they are performing in regards to both safety and effectiveness. In this study, we demonstrate how a medical institution (or physician/physician group) may use data from a multi-center clinical registry of regional anesthesia to inform quality improvement strategies. Methods We analyzed data from the International Registry of Regional Anesthesia that includes prospective data on peripheral regional anesthesia procedures from 19 centers located around the world. Using data from the clinical registry, we present summary statistics of the overall safety and effectiveness of regional anesthesia. Furthermore, we demonstrate, using a variety of performance measures, how these data can be used by hospitals to identify areas for quality improvement. To do so, we compare the performance of one member institution (a United States medical center in New Hampshire) to that of the other 18 member institutions of the clinical registry. Results The clinical registry contained information on 23,271 blocks that were performed between June 1, 2011, and May 1, 2014, on 16,725 patients. The overall success rate was 96.7%, immediate complication rate was 2.2%, and the all-cause 60-day rate of neurological sequelae was 8.3 (95% CI, 7.2–9.7) per 10,000. Registry wide major hospital events included 7 wrong site blocks, 3 seizures, 1 complete heart block, 1 retroperitoneal hematoma, and 3 pneumothoraces. For our reference medical center, we identified areas meriting quality improvement. Specifically, after accounting for differences in the age, sex, and health status of patient populations, the reference medical center appeared to rely more heavily on opioids for post procedure management, had higher patient pain scores, and experienced delayed discharge when compared with other member institutions. Conclusions To our

  12. Can an Arthroplasty Registry Help Decrease Transfusions in Primary Total Joint Replacement? A Quality Initiative.

    Science.gov (United States)

    Markel, David C; Allen, Mark W; Zappa, Nicole M

    2016-01-01

    Standardized care plans are effective at controlling cost and quality. Registries provide insights into quality and outcomes for use of implants, but most registries do not combine implant and care quality data. In 2012, several Michigan area hospitals and a major insurance provider formed a voluntary statewide total joint database/registry, the Michigan Arthroplasty Registry Collaborative Quality Initiative (MARCQI), to collect procedural, hospital, discharge, and readmission data. Noting substantial variation in transfusion practices after total joint arthroplasty (TJA) in our institutions, we used these prospectively collected data to examine whether awareness and education of the American Association of Blood Banks' (AABB) transfusion guidelines would result in decreased transfusions. (1) Can an established arthroplasty registry help implement a quality initiative (QI) designed to decrease the proportion of transfused postoperative patients undergoing TJA? (2) Do data-driven transfusion protocols decrease length of stay without increasing ischemic complications (myocardial infarctions and cerebrovascular accidents)? (3) Are decreased transfusion proportions associated with decreased readmissions, nonischemic morbidity (including deep vein thrombosis and deep prosthetic infection), and mortality in postoperative patients who had undergone TJA? After reviewing data from the recently established MARCQI registry, the orthopaedic department noticed many discrepancies and practice variances regarding blood transfusions among their providers. In October 2013, a QI was implemented to raise awareness of the discrepancies and education about the AABB guidelines was presented at the monthly orthopaedic service line meeting. A total of 1872 TJA cases were reviewed; 50 were excluded for incomplete data and two for intraoperative transfusions for the period before education (May 2012 to June 2013, n = 1240) and after education (November 2013 to April 2014, n = 580). Data

  13. 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

  14. Influences on participant reporting in the World Health Organisation drugs exposure pregnancy registry; a qualitative study.

    Science.gov (United States)

    Allen, Elizabeth N; Gomes, Melba; Yevoo, Lucy; Egesah, Omar; Clerk, Christine; Byamugisha, Josaphat; Mbonye, Anthony; Were, Edwin; Mehta, Ushma; Atuyambe, Lynn M

    2014-10-31

    The World Health Organisation has designed a pregnancy registry to investigate the effect of maternal drug use on pregnancy outcomes in resource-limited settings. In this sentinel surveillance system, detailed health and drug use data are prospectively collected from the first antenatal clinic visit until delivery. Over and above other clinical records, the registry relies on accurate participant reports about the drugs they use. Qualitative methods were incorporated into a pilot registry study during 2010 and 2011 to examine barriers to women reporting these drugs and other exposures at antenatal clinics, and how they might be overcome. Twenty-seven focus group discussions were conducted in Ghana, Kenya and Uganda with a total of 208 women either enrolled in the registry or from its source communities. A question guide was designed to uncover the types of exposure data under- or inaccurately reported at antenatal clinics, the underlying reasons, and how women prefer to be asked questions. Transcripts were analysed thematically. Women said it was important for them to report everything they had used during pregnancy. However, they expressed reservations about revealing their consumption of traditional, over-the-counter medicines and alcohol to antenatal staff because of anticipated negative reactions. Some enrolled participants' improved relationship with registry staff facilitated information sharing and the registry tools helped overcome problems with recall and naming of medicines. Decisions about where women sought care, which influenced medicines used and antenatal clinic attendance, were influenced by pressure within and outside of the formal healthcare system to conform to conflicting behaviours. Conversations also reflected women's responsibilities for producing a healthy baby. Women in this study commonly take traditional medicines in pregnancy, and to a lesser extent over-the-counter medicines and alcohol. The World Health Organisation pregnancy registry

  15. Comparing sexual minority cancer survivors recruited through a cancer registry to convenience methods of recruitment.

    Science.gov (United States)

    Boehmer, Ulrike; Clark, Melissa A; Timm, Alison; Glickman, Mark; Sullivan, Mairead

    2011-01-01

    Sexual minority women, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, are not considered by cancer surveillance. This study assesses the representativeness of sexual minority breast cancer survivors, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, who were recruited into a convenience sample compared with a population-based registry sample of sexual minority breast cancer survivors. Long-term survivors of non-metastatic breast cancer who self-reported as sexual minority were recruited from a cancer registry and subsequently from the community using convenience recruitment methods. Sexual minority breast cancer survivors who screened eligible participated in a telephone survey about their quality of life and factors associated therewith. Participants in the convenience sample were similar to the registry-based sample with respect to adjustment to cancer, physical health, trust in physician, coping, social support, and sexual minority experiences. Compared with the convenience sample, breast cancer survivors in the registry sample were more likely married, more educated, diagnosed more recently, at an earlier stage of cancer, and more likely treated with breast-conserving surgery; they differed on adjuvant therapies. Because sexual minority breast cancer survivors who volunteered for the community-based sample shared most characteristics of the sample recruited from the cancer registry, we concluded that the community sample had comparable representational quality. In the absence of cancer surveillance of sexual minorities, thoughtful convenience recruitment methods provide good representational quality convenience samples. Copyright © 2011 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

  16. Characteristics of national registries for occupational diseases: international development and validation of an audit tool (ODIT

    Directory of Open Access Journals (Sweden)

    Verbeek Jos HAM

    2009-10-01

    Full Text Available Abstract Background- The aim of the study was to develop quality indicators that can be used for quality assessment of registries of occupational diseases in relation to preventive policy on a national level. The research questions were: 1. Which indicators determine the quality of national registries of occupational diseases with respect to their ability to provide appropriate information for preventive policy? 2. What are the criteria that can distinguish low quality from high quality? Methods- First, we performed a literature search to assess which output of registries can be considered appropriate for preventive policy and to develop a set of preliminary indicators and criteria. Second, final indicators and criteria were assessed and their content validity was tested in a Delphi study, for which experts from the 25 EU Member States were invited. Results- The literature search revealed two different types of information output to be appropriate for preventive policy: monitor and alert information. For the evaluation of the quality of the monitor and alert function we developed ten indicators and criteria. Sixteen of the twenty-five experts responded in the first round of the Delphi study, and eleven in the second round. Based on their comments, we assessed the final nine indicators: the completeness of the notification form, coverage of registration, guidelines or criteria for notification, education and training of reporting physicians, completeness of registration, statistical methods used, investigation of special cases, presentation of monitor information, and presentation of alert information. Except for the indicator "coverage of registration" for the alert function, all the indicators met the preset requirements of content validity. Conclusion- We have developed quality indicators and criteria to evaluate registries for occupational diseases on the ability to provide appropriate information for preventive policy on a national level

  17. Utilizing a diabetic registry to manage diabetes in a low-income Asian American population.

    Science.gov (United States)

    Seto, Winnie; Turner, Barbara S; Champagne, Mary T; Liu, Lynn

    2012-08-01

    Racial and income disparities persist in diabetes management in America. One third of African and Hispanic Americans with diabetes receive the recommended diabetes services (hemoglobin A1c [A1c] testing, retinal and foot examinations) shown to reduce diabetes complications and mortality, compared to half of whites with diabetes. National data for Asian Americans are limited, but studies suggest that those with language and cultural barriers have difficulty accessing health services. A diabetic registry has been shown to improve process and clinical outcomes in a population with diabetes. This study examined whether a community center that serves primarily low-income Asian American immigrants in Santa Clara County, California, could improve diabetes care and outcomes by implementing a diabetic registry. The registry was built using the Access 2007 software program. A total of 580 patients with diabetes were identified by reviewing charts, the appointment database, and reimbursement records from Medicaid, Medicare, and private insurance companies. Utilizing the registry, medical assistants contacted patients for follow-up appointments, and medical providers checked and tracked the patients' A1c results. Among the 431 patients who returned for treatment, the mean A1c was reduced from 7.27% to 6.97% over 8 months (P<0.001). Although 10.8% of the patients changed from controlled to uncontrolled diabetes post intervention, 32.6% of patients with uncontrolled diabetes converted to controlled diabetes (P<0.001). The diabetes control rate improved from 47% to 59% at the end of the study. This study demonstrated that a diabetic registry is an effective tool to manage an underserved population with diabetes, thereby reducing disparities in diabetes management.

  18. The Spectrum of Glomerulonephritis in Saudi Arabia: The Results of the Saudi Registry

    Directory of Open Access Journals (Sweden)

    Huraib S

    2000-01-01

    Full Text Available Only few studies regarding glomerulonephritis, with relatively small numbers of patients, have so far been published from different centers in Saudi Arabia, and have reported conflicting results regarding the patterns, even in the same city. The possible reasons for these differences include the small number of patients in the different studies, differences in the indications for renal biopsies, referral bias, geographical differences, and, sometimes, the non-availability of the necessary diagnostic facilities in the reporting centers. In order to overcome these problems, a registry for glomerulonephropathy was attempted in Saudi Arabia. Six large referral hospitals from different regions of Saudi Arabia participated in this registry. Biopsy reports and clinical information of 1294 renal biopsies were obtained. There were 782 renal biopsies due to glomerulonephritis (GN accounting for 77.2% of the total biopsies. Five hundred eighty seven (72.6% were primary glomerulonephritidis. Focal and segmental glomerulosclerosis (FSGS (21.3% and membrano-proliferative glomerulonephritis (MPGN (20.7% were the most common types found in the primary glomerulonephritidis. Membranous glomerulonephritis (MGN was present in only 10.6% of the cases. IgA nephropathy was found in 6.5% of the cases. Of the secondary glomerulo-nephritides, systemic lupus erythematosus (SLE was the most common indication for biopsy (57.0% and amyloidosis was found in only 3.2% of the biopsies. In conclusion, FSGS and MPGN were the most common forms of primary glomerulonephritis in adult patients in Saudi Arabia. MGN was not as common as in the western world. SLE was the commonest cause of secondary GN. Amyloidosis was not as common as in other Arab countries. There is a need for more centers from Saudi Arabia to join this national GN registry. Similar registries can be established in different Arab countries, which all would, hopefully, lead to a Pan-Arab GN registry.

  19. Adoption and implementation of mandated diabetes registries by community health centers.

    Science.gov (United States)

    Helfrich, Christian D; Savitz, Lucy A; Swiger, Kathleen D; Weiner, Bryan J

    2007-07-01

    Innovations adopted by healthcare organizations are often externally mandated. However, few studies examine how mandated innovations progress from adoption to sustained effective use. This study uses Rogers's model of organizational innovation to explore community health centers' (CHCs') mandated adoption and implementation of disease registries in the federal Health Disparities Collaborative (HDC). Case studies were conducted on six CHCs in North Carolina participating in the HDC on type 2 diabetes mellitus. Data were collected from semistructured interviews with key staff, and from site-level and individual-level surveys. Although disease registry adoption and implementation were mandated, CHCs exercised prerogative in the timing of registry adoption and the functions emphasized. Executive and medical director involvement, often directly on the HDC teams, was the single most salient influence on adoption and implementation. Staff members' personal experience with diabetes also provided context and gave registries added significance. Participants lauded HDC's technique of small-scale, rapid-cycle change, but valued even more shared problem solving and peer learning among HDC teams. However, lack of cross-training, inadequate resources, and staff turnover posed serious threats to sustainability of the registries. The present study illustrates the usefulness of Rogers's model for studying mandated innovation and highlights several key factors, including direct, personal involvement of organizational leadership, and shared problem solving and peer learning facilitated by the HDC. However, these six CHCs elected to participate early in the HDC, and may not be typical of North Carolina's remaining CHCs. Furthermore, most face important long-term challenges that threaten routinization.

  20. [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.

  1. Acromegaly according to the Danish National Registry of Patients: how valid are ICD diagnoses and how do patterns of registration affect the accuracy of registry data?

    Directory of Open Access Journals (Sweden)

    Dal J

    2014-09-01

    Full Text Available Jakob Dal,1 Nikolaj Skou,1 Eigil Husted Nielsen,2 Jens Otto Lunde Jørgensen,1 Lars Pedersen3 1Department of Endocrinology, Aarhus University Hospital, Aarhus, 2Department of Endocrinology, Aalborg University Hospital, Aalborg, 3Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Background: The incidence of acromegaly is uncertain, since population-based studies are few. In the absence of a specific acromegaly registry, the Danish National Registry of Patients (DNRP becomes a potential source of data for studying the epidemiology of acromegaly, by linking all hospital discharge diagnoses to the personal identification numbers of individual Danish inhabitants. The validity of the DNRP with respect to acromegaly, however, remains to be tested. The aim of this study was to validate the International Classification of Diseases (ICD codes for acromegaly (ICD-8: 25300, 25301. ICD-10: E22.0 as used in the DNRP, and to assess the influence of various registration patterns on the accuracy of registry data. Methods: We identified patients registered with ICD codes for the diagnosis of acromegaly or other pituitary disorders during the period 1991–2009. Data on the institutional origin of each registration and the number of relevant DNRP registrations were recorded, and systematic patient chart reviews were performed to confirm the diagnosis. Results: In total, 110 cases of acromegaly were confirmed, compared with 275 registered cases, yielding a positive predictive value (PPV of 40%. When restricting the search to the regional highly specialized department of endocrinology, the PPV increased to 53% with no loss of cases with confirmed acromegaly. With a requirement of at least one, two, or three DNRP registrations, the PPV increased, but with a concurrent loss of confirmed cases. Conclusion: The DNRP seems to be a useful source for identifying new cases of acromegaly, especially when restricting the search to a relevant

  2. Systematic Reviews Published in Emergency Medicine Journals Do Not Routinely Search Clinical Trials Registries: A Cross-Sectional Analysis.

    Science.gov (United States)

    Keil, Lukas G; Platts-Mills, Timothy F; Jones, Christopher W

    2015-10-01

    Publication bias compromises the validity of systematic reviews. This problem can be addressed in part through searching clinical trials registries to identify unpublished studies. This study aims to determine how often systematic reviews published in emergency medicine journals include clinical trials registry searches. We identified all systematic reviews published in the 6 highest-impact emergency medicine journals between January 1 and December 31, 2013. Systematic reviews that assessed the effects of an intervention were further examined to determine whether the authors described searching a clinical trials registry and whether this search identified relevant unpublished studies. Of 191 articles identified through PubMed search, 80 were confirmed to be systematic reviews. Our sample consisted of 41 systematic reviews that assessed a specific intervention. Eight of these 41 (20%) searched a clinical trials registry. For 4 of these 8 reviews, the registry search identified at least 1 relevant unpublished study. Systematic reviews published in emergency medicine journals do not routinely include searches of clinical trials registries. By helping authors identify unpublished trial data, the addition of registry searches may improve the validity of systematic reviews. Copyright © 2014 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

  3. 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.

  4. Evolution of Web Services in EOSDIS: Search and Order Metadata Registry (ECHO)

    Science.gov (United States)

    Mitchell, Andrew; Ramapriyan, Hampapuram; Lowe, Dawn

    2009-01-01

    During 2005 through 2008, NASA defined and implemented a major evolutionary change in it Earth Observing system Data and Information System (EOSDIS) to modernize its capabilities. This implementation was based on a vision for 2015 developed during 2005. The EOSDIS 2015 Vision emphasizes increased end-to-end data system efficiency and operability; increased data usability; improved support for end users; and decreased operations costs. One key feature of the Evolution plan was achieving higher operational maturity (ingest, reconciliation, search and order, performance, error handling) for the NASA s Earth Observing System Clearinghouse (ECHO). The ECHO system is an operational metadata registry through which the scientific community can easily discover and exchange NASA's Earth science data and services. ECHO contains metadata for 2,726 data collections comprising over 87 million individual data granules and 34 million browse images, consisting of NASA s EOSDIS Data Centers and the United States Geological Survey's Landsat Project holdings. ECHO is a middleware component based on a Service Oriented Architecture (SOA). The system is comprised of a set of infrastructure services that enable the fundamental SOA functions: publish, discover, and access Earth science resources. It also provides additional services such as user management, data access control, and order management. The ECHO system has a data registry and a services registry. The data registry enables organizations to publish EOS and other Earth-science related data holdings to a common metadata model. These holdings are described through metadata in terms of datasets (types of data) and granules (specific data items of those types). ECHO also supports browse images, which provide a visual representation of the data. The published metadata can be mapped to and from existing standards (e.g., FGDC, ISO 19115). With ECHO, users can find the metadata stored in the data registry and then access the data either

  5. Medical Dosimetric Registry of Russian Atomic Industry Employees: Current Status and Perspectives

    International Nuclear Information System (INIS)

    Ilyin, L. A.; Kiselev, M. F.; Panfilov, A. P.; Kochetkov, O. A.; Ivanov, A. A.; Grinev, M. P.; Soloviev, V. Y.; Semenov, V. G.; Tukov, A. R.; Koshuurnikova, N. A.; Takhauov, R. M.; Melnikov, G. Y.

    2004-01-01

    Epidemiological studies of nuclear industry personnel contain the significant abilities to assess the prolonged radiation exposure effects in the human health. The clarification of these assessments and following improvements of the scientific justification of radiation regulation require the expansion of factual basis of the research currently, Branch Medical Dosimetric Registry (BMDR) of atomic industry and nuclear power employees is under the development in Russian to compose a number of regional registries. This work is coordinated by the State Research Center- Institute of Biophysics (Moscow). The first phase of this project was devoted to the forming of the regional registry of Mayak PA employees (Ozersk, South Uranl region). the employee registries of Siberian Chemical Plant (SCP, Seversk, Tomsk region) and Mountain Chemical Plant (MCP, Zheleznogorsk, Krasnoyarsk region) are at the finalization. At later phases, BMDR will be added by the information on other enterprises and on operating NPP too. The paper describes the structure, general issues of the forming and current status of BMDR. The comparison of major BMDR features versus LSS registry (which is the one of basic components for international radiation protection recommendations and current radiation protection standards) demonstrates that BMDR information can be more preferable to assess the significance of the man made radiation at high and intermediate dose ranges. Particularly, the number of employees (20-40 year age range) exposed to doses specific to detectable radiation health effects (above 2000 mSv) is almost ten times more than that for LSS cohort. Besides, the health monitoring was elaborated since the employment start point (Whereas, since year 5 for LSS cohort). BMDR dose records were measured (against LSS reconstructed doses) and the employee exposure duration was equal to years and decade (alternatively to momentary exposure recorded in LSS). BMDR data quantity and quality correspond to

  6. BioShaDock: a community driven bioinformatics shared Docker-based tools registry [version 1; referees: 2 approved

    Directory of Open Access Journals (Sweden)

    François Moreews

    2015-12-01

    Full Text Available Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

  7. Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

    Science.gov (United States)

    Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

    2017-10-27

    Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

  8. 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

  9. 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.

  10. Variation in performance measure criteria significantly affects cardiology practice rankings: Insights from the National Cardiovascular Data Registry's Practice Innovation and Clinical Excellence Registry.

    Science.gov (United States)

    Eapen, Zubin J; Tang, Fengming; Jones, Phil G; Maddox, Thomas M; Oetgen, William J; Spertus, John A; Rumsfeld, John S; Heidenreich, Paul A; Peterson, Eric D; Drozda, Joseph P

    2015-06-01

    Million Hearts is a national initiative to prevent 1 million heart attacks and strokes over 5 years by improving cardiovascular prevention. An important tool in the success of programs like Million Hearts is public ranking on the quality of practices, yet different measures may provide different rankings, so the true quality of practices is difficult to discern. We evaluated the quality of ambulatory cardiology care using performance measure metrics. We compared rankings of practices participating in the National Cardiovascular Data Registry's Practice Innovation and Clinical Excellence Registry using measures from (1) the physician quality reporting system and (2) the American College of Cardiology/American Heart Association/Physician Consortium for Performance Improvement. We compared achievement rates for measures between the 2 frameworks and determined correlations in rankings using Spearman correlation coefficients. From January 1, 2008 to December 31, 2012, there were 1,711,326 patients enrolled from 111 US practices. Among eligible patients, the physician quality reporting system and American College of Cardiology/American Heart Association/Physician Consortium for Performance Improvement measures were achieved in 76.1% versus 77.4% for antiplatelet prescription (P performance and failing to achieve public health goals. Copyright © 2015 Elsevier Inc. All rights reserved.

  11. The first report of a 5-year period cancer registry in Greece (2009-2013): a pathology-based cancer registry.

    Science.gov (United States)

    Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

    2018-04-01

    Cancer registries are essential in health care, since they allow more accurate planning of necessary health services and evaluation of programs for cancer prevention and control. The Hellenic Society of Pathology (HSP) having recognized the lack of such information in Greece has undertaken the task of a 5-year pathology-based cancer registry in Greece (2009-2013). In this study, > 95% of all pathology laboratories in the national health system hospitals and 100% of pathology laboratories in private hospitals, as well as > 80% of private pathology laboratories have contributed their data. The most common cancer types overall were as follows: breast cancer (18.26%), colorectal cancer (15.49%), prostate cancer (13.49%), and lung cancer (10.24% of all registered cancers). In men, the most common neoplasms were as follows: prostate cancer, colorectal cancer, lung cancer, and gastric cancer. In women, the most common neoplasms were as follows: breast cancer, colorectal cancer, thyroid cancer, and lung cancer. The data on cancer burden in Greece, presented herein, fill the void of cancer information in Greece that affects health care not only nationally but Europe-wise.

  12. Gaucher disease types 1 and 3: Phenotypic characterization of large populations from the ICGG Gaucher Registry.

    Science.gov (United States)

    Grabowski, Gregory A; Zimran, Ari; Ida, Hiroyuki

    2015-07-01

    Study of the natural history of Gaucher disease has revealed marked phenotypic variation. Correlations to genotypes could provide insight into individual susceptibility to varying disease severity, which may impact whole-life medical care, reproductive decisions, and therapeutic choices for affected families. Importantly, pre-symptomatic or prospective interventions or the use of therapies with significant risk require accurate risk-benefit analyses based on the prognosis for individual patients. The body of international data held within the International Collaborative Gaucher Group (ICGG) Gaucher Registry provides an unprecedented opportunity to characterize the phenotypes of Gaucher disease types 1 and 3 and to appreciate demographic and ethnic factors that may influence phenotypes. The diversity of GBA gene mutations from patients with Gaucher disease represented in the ICGG Gaucher Registry database and in the literature provides the basis for initial genotype/phenotype correlations, the outcomes of which are summarized here. © 2015 Wiley Periodicals, Inc.

  13. [The possibility of registering in the Spanish Civil Registry children born abroad from surrogate mothers].

    Science.gov (United States)

    De Barrón Arniches, Paloma

    2009-01-01

    In the Spanish Civil Registry it is now possible to register "natural" children of a homosexual marriage born overseas through surrogate pregnancy. And this is despite article 10.1 of the current Spanish law regarding assisted human reproduction techniques, which declares fully null and void contracts renouncing maternal relationship, and orders imperatively that in these cases, the relationship of children is determined by birth. This article analyses and formulates a criticism regarding the Resolution of the Office of Registries and Notaries, of February 18, 2009, insisting on some relevant issues such as legal security and greater interest of the minor, in the context of the analysis of the facts of the case and the arguments put forward in the resolution.

  14. The Danish HD Registrya nationwide family registry of HD families in Denmark

    DEFF Research Database (Denmark)

    Gilling, M.; Budtz-Jorgensen, E.; Boonen, S. E.

    2017-01-01

    -8:100 000. 1451 individuals in the DHR had the size of the HTT CAG repeat determined of which 975 had 36 CAG repeats or more (mean ± SD: 43,5 ± 4,8). Two unrelated individuals were compound heterozygous for alleles ≥36 CAGs, and 60 individuals from 34 independent families carried an intermediate allele.......The Danish Huntington's Disease Registry (DHR) is a nationwide family registry comprising 14 245 individuals from 445 Huntington's disease (HD) families of which the largest family includes 845 individuals in 8 generations. 1136 DNA and/or blood samples and 18 fibroblast cultures are stored...... in a local biobank. The birthplace of the oldest HD carrier in each of the 261 families of Danish origin was unevenly distributed across Denmark with a high number of families in the middle part of the peninsula Jutland and in Copenhagen, the capital. The prevalence of HD in Denmark was calculated to be 5...

  15. Summary of data held by the National Registry for Radiation Workers

    CERN Document Server

    Kendall, G M; O'Hagen, J A; Rees, S; Walker, S M

    1988-01-01

    This report summarises the data held by the National Registry for Radiation Workers at the end of 1985. Agreement has been reached with the participating organisations for transfer of records on 97,000 individuals. However, some individuals have been employed by more than one participating organisation and a few (2%) have refused to participate, so the final study population will be somewhat smaller. Over 95% of participants have been registered and arrangements are in hand to include most of the remainder. Although some information is still outstanding, there has been a considerable improvement since the publication of the second supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) which described the database at the end of 1983. Details are given for each of the participating organisations.

  16. Summary of data held by the National Registry for Radiation Workers

    CERN Document Server

    Darby, S C

    1982-01-01

    This supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) summarises the data held by the National Registry for Radiation Workers at the end of 1981. At this time the total population for which agreement had been reached with the participating organisations was about 54,000. The actual number registered, approximately 40,000, was about three quarters of this study population although for many individuals the data were still incomplete. The coverage of the study population is shown for each of the participating organisations. This summary is intended as a supplement to be used in conjunction with the main protocol for the study. It will be reissued from time to time as more data are received.

  17. Summary of data held by the National Registry for Radiation Workers

    CERN Document Server

    Saw, G M A

    1985-01-01

    This supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) summarises the data held by the National Registry for Radiation Workers) at the end of 1983. It follows the form of the first supplement which described the data base at the end of 1981. The total population for which agreement has been reached with the participating organisations is about 68,000. Over 86% of these have ben registered, arrangements are in hand to include most of the remainder. Only 2% of the population have refused to participate as individuals. Although some information is still outstanding, there has been a considerable improvement since 1981. More details are given for each of the participating organisations. Further supplements will be issued from time to time as more data are received.

  18. Evaluating the Joint Theater Trauma Registry as a data source to benchmark casualty care.

    Science.gov (United States)

    O'Connell, Karen M; Littleton-Kearney, Marguerite T; Bridges, Elizabeth; Bibb, Sandra C

    2012-05-01

    Just as data from civilian trauma registries have been used to benchmark and evaluate civilian trauma care, data contained within the Joint Theater Trauma Registry (JTTR) present a unique opportunity to benchmark combat care. Using the iterative steps of the benchmarking process, we evaluated data in the JTTR for suitability and established benchmarks for 24-hour mortality in casualties with polytrauma and a moderate or severe blunt traumatic brain injury (TBI). Mortality at 24 hours was greatest in those with polytrauma and a severe blunt TBI. No mortality was seen in casualties with polytrauma and a moderate blunt TBI. Secondary insults after TBI, especially hypothermia and hypoxemia, increased the odds of 24-hour mortality. Data contained in the JTTR were found to be suitable for establishing benchmarks. JTTR data may be useful in establishing benchmarks for other outcomes and types of combat injuries.

  19. The need for a disease-specific prospective pregnancy registry for multiple sclerosis (MS).

    Science.gov (United States)

    Alwan, Sura; Chambers, Christina D; Armenti, Vincent T; Sadovnick, A Dessa

    2015-01-01

    Multiple sclerosis (MS) is the most commonly acquired neurological disorder affecting young adults of reproductive age with an approximately 3:1 female to male ratio. Although pregnancy is not contraindicated in MS, data are limited regarding pregnancy outcome among MS patients, and the safety or risk to the fetus associated with most maternal MS treatments, such as disease modifying therapies (DMTs), during pregnancy is unknown. We review available epidemiological and registry data on MS and pregnancy and discuss the need to initiate a North American Multiple Sclerosis Pregnancy Registry that will prospectively identify pregnancies in women with MS, obtain information on the disease, and its treatment during gestation and lactation and follow the children to determine their health status. Copyright © 2014 Elsevier B.V. All rights reserved.

  20. United States Transuranium and Uranium Registries. Annual report October 1, 1994 - September 30, 1995

    Energy Technology Data Exchange (ETDEWEB)

    Kathren, R.L.; Harwick, L.A.; Markel, M.J.

    1996-07-01

    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 October 1994 through September 1995.

  1. United States Transuranium and Uranium Registries. Annual report February 1, 2000--January 31, 2001

    Energy Technology Data Exchange (ETDEWEB)

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

    2001-07-01

    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 2000 through January 2001.

  2. Rationale and design of the PREDICT (Plaque Registration and Evaluation Detected In Computed Tomography) registry.

    Science.gov (United States)

    Yamamoto, Hideya; Awai, Kazuo; Kuribayashi, Sachio; Kihara, Yasuki

    2014-01-01

    At least two-thirds of cases of acute coronary syndrome are caused by disruption of an atherosclerotic plaque. The natural history of individual plaques is unknown and needs to be established. The Plaque Registration and Evaluation Detected In Computed Tomography (PREDICT) registry is a prospective, multicenter, longitudinal, observational registry. This registry was designed to examine the relationships among coronary CT angiography (CTA) findings and clinical findings, mortality, and morbidity. The relationships among progression of coronary atherosclerosis, including changes in plaque characteristics on coronary CTA, and serum lipid levels and modification of coronary risk factors will also be evaluated. From October 2009 to December 2012, 3015 patients who underwent coronary CTA in 29 centers in Japan were enrolled. These patients were followed for 2 years. The primary end points were considered as all-cause mortality and major cardiac events, including cardiac death, nonfatal myocardial infarction, and unstable angina that required hospitalization. The secondary end points were heart failure that required administration of diuretics, target vessel revascularization, cerebral infarction, peripheral arterial disease, and invasive coronary angiography. Blood pressure, serum lipid, and C-reactive protein levels and all cardiovascular events were recorded at 1 and 2 years. If the initial coronary CTA showed any stenosis or plaques, follow-up coronary CTA was scheduled at 2 years to determine changes in coronary lesions, including changes in plaque characteristics. Analysis of the PREDICT registry data will clarify the relationships between coronary CTA findings and cardiovascular mortality and morbidity in a collaborative multicenter fashion. This trial is registered at www.clinicaltrials.gov as NCT 00991835. Copyright © 2014 Society of Cardiovascular Computed Tomography. All rights reserved.

  3. Cancer Registries and Monitoring the Impact of Prophylactic Human Papillomavirus Vaccines: The Potential Role

    OpenAIRE

    Saraiya, Mona; Goodman, Marc T.; Datta, S. Deblina; Chen, Vivien W.; Wingo, Phyllis A.

    2008-01-01

    The recent US Food and Drug Administration licensure of a prophylactic vaccine against oncogenic human papillomavirus (HPV) types 16 and 18, the first of its kind, poses unique challenges in postmarketing vaccine surveillance, especially in measuring vaccine effectiveness against biologic endpoints of HPV infection. Historically, the national system of population-based cancer registries in the US has provided high-quality data on cancer incidence and mortality for the most important biologic ...

  4. Splenectomy associated changes in IgM memory B cells in an adult spleen registry cohort.

    Directory of Open Access Journals (Sweden)

    Paul U Cameron

    Full Text Available Asplenic patients have a lifelong risk of overwhelming post-splenectomy infection and have been reported to have low numbers of peripheral blood IgM memory B cells. The clinical value of quantitation of memory B cells as an indicator of splenic abnormality or risk of infection has been unclear. To assess changes in B cell sub-populations after splenectomy we studied patients recruited to a spleen registry (n = 591. A subset of 209 adult asplenic or hyposplenic subjects, and normal controls (n = 140 were tested for IgM memory B cells. We also determined a changes in IgM memory B cells with time after splenectomy using the cross-sectional data from patients on the registry and b the kinetics of changes in haematological markers associated with splenectomy(n = 45. Total B cells in splenectomy patients did not differ from controls, but memory B cells, IgM memory B cells and switched B cells were significantly (p<0.001 reduced. The reduction was similar for different indications for splenectomy. Changes of asplenia in routine blood films including presence of Howell-Jolly bodies (HJB, occurred early (median 25 days and splenectomy associated thrombocytosis and lymphocytosis peaked by 50 days. There was a more gradual decrease in IgM memory B cells reaching a stable level within 6 months after splenectomy. IgM memory B cells as proportion of B cells was the best discriminator between splenectomized patients and normal controls and at the optimal cut-off of 4.53, showed a true positive rate of 95% and false positive rate of 20%. In a survey of 152 registry patients stratified by IgM memory B cells around this cut-off there was no association with minor infections and no registry patients experienced OPSI during the study. Despite significant changes after splenectomy, conventional measures of IgM memory cells have limited clinical utility in this population.

  5. Comparison of interventional cardiology in two European countries: a nationwide Internet based registry study.

    Science.gov (United States)

    Gudnason, T; Gudnadottir, G S; Lagerqvist, B; Eyjolfsson, K; Nilsson, T; Thorgeirsson, G; Thorgeirsson, G; Andersen, K; James, S

    2013-09-30

    The practice of interventional cardiology differs between countries and regions. In this study we report the results of the first nation-wide long-term comparison of interventional cardiology in two countries using a common web-based registry. The Swedish Coronary Angiography and Angioplasty Registry (SCAAR) was used to prospectively and continuously collect background-, quality-, and outcome parameters for all coronary angiographies (CA) and percutaneous coronary interventions (PCI) performed in Iceland and Sweden during one year. The rate of CA per million inhabitants was higher in Iceland than in Sweden. A higher proportion of patients had CA for stable angina in Iceland than in Sweden, while the opposite was true for ST elevation myocardial infarction. Left main stem stenosis was more commonly found in Iceland than in Sweden. The PCI rate was similar in the two countries as was the general success rate of PCI, achievement of complete revascularisation and the overall stent use. Drug eluting stents were more commonly used in Iceland (23% vs. 19%). The use of fractional flow reserve (0.2% vs. 10%) and the radial approach (0.6% vs. 33%) was more frequent in Sweden than in Iceland. Serious complications and death were very rare in both countries. By prospectively comparing interventional cardiology in two countries, using a common web based registry online, we have discovered important differences in technique and indications. A discovery such as this can lead to a change in clinical practice and inspire prospective multinational randomised registry trials in unselected, real world populations. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

  6. Using registries to integrate bioinformatics tools and services into workbench environments

    DEFF Research Database (Denmark)

    Ménager, Hervé; Kalaš, Matúš; Rapacki, Kristoffer

    2016-01-01

    The diversity and complexity of bioinformatics resources presents significant challenges to their localisation, deployment and use, creating a need for reliable systems that address these issues. Meanwhile, users demand increasingly usable and integrated ways to access and analyse data, especially......, a software component that will ease the integration of bioinformatics resources in a workbench environment, using their description provided by the existing ELIXIR Tools and Data Services Registry....

  7. Integrated management of information inside maintenance processes. From the building registry to BIM systems

    Directory of Open Access Journals (Sweden)

    Cinzia Talamo

    2014-10-01

    Full Text Available The paper presents objec- tives, methods and results of two researches dealing with the improvement of integrated information management within maintenance processes. Focusing on information needs regarding the last phases of the building process, the two researches draft approaches characterizing a path of progressive improve- ment of strategies for integration: from a building registry, unique for the whole construction process, to an integrated management of the building process with the support of BIM systems.

  8. United States Transuranium and Uranium Registries. Annual report February 1, 2000-January 31, 2001

    International Nuclear Information System (INIS)

    Ehrhart, Susan M.; Filipy, Ronald E.

    2001-01-01

    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 2000 through January 2001

  9. Acute injuries in soccer, ice hockey, volleyball, basketball, judo, and karate: analysis of national registry data.

    OpenAIRE

    Kujala, U. M.; Taimela, S.; Antti-Poika, I.; Orava, S.; Tuominen, R.; Myllynen, P.

    1995-01-01

    OBJECTIVE--To determine the acute injury profile in each of six sports and compare the injury rates between the sports. DESIGN--Analysis of national sports injury insurance registry data. SETTING--Finland during 1987-91. SUBJECTS--621,691 person years of exposure among participants in soccer, ice hockey, volleyball, basketball, judo, or karate. MAIN OUTCOME MEASURES--Acute sports injuries requiring medical treatment and reported to the insurance company on structured forms by the patients and...

  10. Upper Airway Stimulation for Obstructive Sleep Apnea: Results from the ADHERE Registry.

    Science.gov (United States)

    Boon, Maurits; Huntley, Colin; Steffen, Armin; Maurer, Joachim T; Sommer, J Ulrich; Schwab, Richard; Thaler, Erica; Soose, Ryan; Chou, Courtney; Strollo, Patrick; Kezirian, Eric J; Chia, Stanley; Withrow, Kirk; Weidenbecher, Mark; Strohl, Kingman; Doghramji, Karl; Hofauer, Benedikt; Heiser, Clemens

    2018-03-01

    Objective Upper airway stimulation (UAS) is an alternative treatment option for patients unable to tolerate continuous positive airway pressure (CPAP) for the treatment of obstructive sleep apnea (OSA). Studies support the safety and efficacy of this therapy. The aim of this registry is to collect retrospective and prospective objective and subjective outcome measures across multiple institutions in the United States and Germany. To date, it represents the largest cohort of patients studied with this therapy. Study Design Retrospective and prospective registry study. Setting Ten tertiary care hospitals in the United States and Germany. Subjects and Methods Patients were included who had moderate to severe OSA, were intolerant to CPAP, and were undergoing UAS implantation. Baseline demographic and sleep study data were collected. Objective and subjective treatment outcomes, adverse events, and patient and physician satisfaction were reviewed. Results The registry enrolled 301 patients between October 2016 and September 2017. Mean ± SD AHI decreased from 35.6 ± 15.3 to 10.2 ± 12.9 events per hour ( P < .0001), and Epworth Sleepiness Scale scores decreased from 11.9 ± 5.5 to 7.5 ± 4.7 ( P < .0001) from baseline to the posttitration visit. Patients utilized therapy for 6.5 hours per night. There were low rates of procedure- and device-related complications. Clinical global impression scores demonstrated that the majority of physicians (94%) saw improvement in their patients' symptoms with therapy. The majority of patients (90%) were more satisfied with UAS than CPAP. Conclusions Across a multi-institutional registry, UAS therapy demonstrates significant improvement in subjective and objective OSA outcomes, good therapy adherence, and high patient satisfaction.

  11. Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

    Science.gov (United States)

    Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

    2016-02-01

    The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement.

  12. The Prostate Cancer Registry: monitoring patterns and quality of care for men diagnosed with prostate cancer.

    Science.gov (United States)

    Evans, Sue M; Millar, Jeremy L; Wood, Julie M; Davis, Ian D; Bolton, Damien; Giles, Graham G; Frydenberg, Mark; Frauman, Albert; Costello, Antony; McNeil, John J

    2013-04-01

    To establish a pilot population-based clinical registry with the aim of monitoring the quality of care provided to men diagnosed with prostate cancer. All men aged >18 years from the contributing hospitals in Victoria, Australia, who have a diagnosis of prostate cancer confirmed by histopathology report notified to the Victorian Cancer Registry are eligible for inclusion in the Prostate Cancer Registry (PCR). A literature review was undertaken aiming to identify existing quality indicators and source evidence-based guidelines from both Australia and internationally. A Steering Committee was established to determine the minimum dataset, select quality indicators to be reported back to clinicians, identify the most effective recruitment strategy, and provide a governance structure for data requests; collection, analysis and reporting of data; and managing outliers. A minimum dataset comprising 72 data items is collected by the PCR, enabling ten quality indicators to be collected and reported. Outcome measures are risk adjusted according to the established National Comprehensive Cancer Network and Cancer of the Prostate Risk Assessment Score (surgery only) risk stratification model. Recruitment to the PCR occurs concurrently with mandatory notification to the state-based Cancer Registry. The PCR adopts an opt-out consent process to maximize recruitment. The data collection approach is standardized, using a hybrid of data linkage and manual collection, and data collection forms are electronically scanned into the PCR. A data access policy and escalation policy for mortality outliers has been developed. The PCR provides potential for high-quality population-based data to be collected and managed within a clinician-led governance framework. This approach satisfies the requirement for health services to establish quality assessment, at the same time as providing clinically credible data to clinicians to drive practice improvement. © 2012 THE AUTHORS. BJU INTERNATIONAL

  13. Temporal Trends in Fertility Rates: A Nationwide Registry Based Study from 1901 to 2014

    OpenAIRE

    Blomberg Jensen, Martin; Priskorn, L?rke; Jensen, Tina Kold; Juul, Anders; Skakkebaek, Niels Erik

    2015-01-01

    Objective Increasing age at first childbirth has been suggested to increase the risk for infertility. Our objective is to determine whether women above thirty years of age historically have been able to sustain fertility rates above replacement level. Design A descriptive nationwide Danish study using birth registries from 1901?2014. Setting Information on women?s age at childbirth was obtained by using records from primary, secondary and tertiary institutions. Participants Mothers to 8,024,9...

  14. The Burns Registry of Australia and New Zealand: progressing the evidence base for burn care.

    Science.gov (United States)

    Cleland, Heather; Greenwood, John E; Wood, Fiona M; Read, David J; Wong She, Richard; Maitz, Peter; Castley, Andrew; Vandervord, John G; Simcock, Jeremy; Adams, Christopher D; Gabbe, Belinda J

    2016-03-21

    Analysis of data from the Burns Registry of Australia and New Zealand (BRANZ) to determine the extent of variation between participating units in treatment and in specific outcomes during the first 4 years of its operation. BRANZ, an initiative of the Australian and New Zealand Burn Association, is a clinical quality registry developed in accordance with the Australian Commission on Safety and Quality in Healthcare national operating principles. Patients with burn injury who fulfil pre-defined criteria are transferred to and managed in designated burn units. There are 17 adult and paediatric units in Australia and New Zealand that manage almost all patients with significant burn injury. Twelve of these units treat adult patients. Data on 7184 adult cases were contributed by ten acute adult burn units to the registry between July 2010 and June 2014.Major outcomes: In-hospital mortality, hospital length of stay, skin grafting rates, and rates of admission to intensive care units. Considerable variations in unit profiles (including numbers of patients treated), in treatment and in outcomes were identified. Despite the highly centralised delivery of care to patients with severe or complex burn injury, and the relatively small number of specialist burn units, we found significant variation between units in clinical management and in outcomes. BRANZ data from its first 4 years of operation support its feasibility and the value of further development of the registry. Based on these results, the focus of ongoing research is to improve understanding of the reasons for variations in practice and of their effect on outcomes for patients, and to develop evidence-informed clinical guidelines for burn management in Australia and New Zealand.

  15. Splenectomy Associated Changes in IgM Memory B Cells in an Adult Spleen Registry Cohort

    Science.gov (United States)

    Cameron, Paul U.; Jones, Penelope; Gorniak, Malgorzata; Dunster, Kate; Paul, Eldho; Lewin, Sharon; Woolley, Ian; Spelman, Denis

    2011-01-01

    Asplenic patients have a lifelong risk of overwhelming post-splenectomy infection and have been reported to have low numbers of peripheral blood IgM memory B cells. The clinical value of quantitation of memory B cells as an indicator of splenic abnormality or risk of infection has been unclear. To assess changes in B cell sub-populations after splenectomy we studied patients recruited to a spleen registry (n = 591). A subset of 209 adult asplenic or hyposplenic subjects, and normal controls (n = 140) were tested for IgM memory B cells. We also determined a) changes in IgM memory B cells with time after splenectomy using the cross-sectional data from patients on the registry and b) the kinetics of changes in haematological markers associated with splenectomy(n = 45). Total B cells in splenectomy patients did not differ from controls, but memory B cells, IgM memory B cells and switched B cells were significantly (psplenectomy. Changes of asplenia in routine blood films including presence of Howell-Jolly bodies (HJB), occurred early (median 25 days) and splenectomy associated thrombocytosis and lymphocytosis peaked by 50 days. There was a more gradual decrease in IgM memory B cells reaching a stable level within 6 months after splenectomy. IgM memory B cells as proportion of B cells was the best discriminator between splenectomized patients and normal controls and at the optimal cut-off of 4.53, showed a true positive rate of 95% and false positive rate of 20%. In a survey of 152 registry patients stratified by IgM memory B cells around this cut-off there was no association with minor infections and no registry patients experienced OPSI during the study. Despite significant changes after splenectomy, conventional measures of IgM memory cells have limited clinical utility in this population. PMID:21829713

  16. The Latin American DILI Registry Experience: A Successful Ongoing Collaborative Strategic Initiative

    Directory of Open Access Journals (Sweden)

    Fernando Bessone

    2016-02-01

    Full Text Available Drug induced liver injury (DILI is a rare but well recognized serious adverse reaction. Pre-marketing studies may not detect liver injury, and DILI becomes very often apparent after the drug is launched to the market. Specific biomarkers for DILI prediction or diagnosis are not available. Toxic liver reactions present with a wide spectrum of phenotypes and severity, and our knowledge on the mechanisms underlying idiosyncratic reactions and individual susceptibility is still limited. To overcome these limitations, country-based registries and multicenter research networks have been created in Europe and North America. Reliable epidemiological data on DILI in Latin America (LA, a region with a large variety of ethnic groups, were however lacking. Fortunately, a LA network of DILI was set up in 2011, with the support of the Spanish DILI Registry from the University of Malaga. The primary aim of the Latin DILI Network (LATINDILIN Registry was to prospectively identify bona fide DILI cases and to collect biological samples to study genetic biomarkers. Physicians involved in the project must complete a structured report form describing the DILI case presentation and follow-up which is submitted to a Coordinator Center in each country, where it is further assessed for completeness. During the last four years, several LA countries (Argentina, Uruguay, Chile, Mexico, Paraguay, Brazil, Ecuador, Peru, Venezuela and Colombia have joined the network and committed with this project. At that point, to identify both our strengths and weaknesses was a very important issue. In this review, we will describe how the LATINDILI Registry was created. The aims and methods to achieve these objectives will be discussed in depth. Additionally, both the difficulties we have faced and the strategies to solve them will be also pinpointed. Finally, we will report on our preliminary results, and discuss ideas to expand and to keep running this network.

  17. British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry

    International Nuclear Information System (INIS)

    Uberoi, Raman; Tapping, Charles Ross; Chalmers, Nicholas; Allgar, Victoria

    2013-01-01

    Purpose: The British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry was produced to provide an audit of current United Kingdom (UK) practice regarding placement and retrieval of IVC filters to address concerns regarding their safety. Methods: The IVC filter registry is a web-based registry, launched by the BSIR on behalf of its membership in October 2007. This report is based on prospectively collected data from October 2007 to March 2011. This report contains analysis of data on 1,434 IVC filter placements and 400 attempted retrievals performed at 68 UK centers. Data collected included patient demographics, insertion and retrieval data, and patient follow-up. Results: IVC filter use in the majority of patients in the UK follows accepted CIRSE guidelines. Filter placement is usually a low-risk procedure, with a low major complication rate ( 9 weeks versus those with a shorter dwell time. New lower limb deep vein thrombosis (DVT) and/or IVC thrombosis was reported in 88 patients following filter placement, there was no significant difference of incidence between filter types. Conclusions: This registry report provides interventional radiologists and clinicians with an improved understanding of the technical aspects of IVC filter placement to help improve practice, and the potential consequences of IVC filter placement so that we are better able to advise patients. There is a significant learning curve associated with IVC filter insertion, and when a filter is placed with the intention of removal, procedures should be in place to avoid the patient being lost to follow-up

  18. Registry of patients with stroke stated in a public hospital of Peru, 2000-2009

    OpenAIRE

    Castañeda-Guarderas, Ana; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. Médico Cirujano.; Beltrán-Ale, Guillermo; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. Médico Cirujano.; Casma-Bustamante, Renzo; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. Médico Cirujano.; Ruíz-Grosso, Paulo; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. Grupo de Trabajo en Salud Mental, Universidad Peruana Cayetano Heredia. Lima, Perú. Médico Cirujano.; Málaga, Germán; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. Centro de Excelencia en Enfermedades Crónicas (CRONICAS), Universidad Peruana Cayetano Heredia. Lima, Perú. Departamento de Medicina, Universidad Peruana Cayetano Heredia. Lima, Perú. Médico Internista, Magíster en Medicina.

    2014-01-01

    We performed a descriptive study taking on account the characteristics of the registries of the patients hospitalized at the Hospital Nacional Cayetano Heredia between the years 2000 and 2009 with stroke as hospitalization diagnosis. 2225 records were obtained from patients older than 18, with stroke. According to ICD-10, 1071 had diagnosis of ischemic stroke, 554 were hemorrhagic, 183 were subarachnoid hemorrhage, 49 were ischemic plus hemorrhagic, 10 were transient ischemic attack (TIA)...

  19. Adult congenital heart disease in Greece: Preliminary data from the CHALLENGE registry.

    Science.gov (United States)

    Giannakoulas, G; Vasiliadis, K; Frogoudaki, A; Ntellos, C; Tzifa, A; Brili, S; Manginas, A; Papaphylactou, M; Parcharidou, D; Kampouridis, N; Pitsis, A; Chamaidi, A; Kolios, M; Papadopoulos, G; Douras, A; Davlouros, P; Ntiloudi, D; Karvounis, H; Kalangos, A; Tsioufis, C; Rammos, S

    2017-10-15

    The majority of patients with congenital heart disease (CHD), nowadays, survives into adulthood and is faced with long-term complications. We aimed to study the basic demographic and clinical characteristics of adult patients with congenital heart disease (ACHD) in Greece. A registry named CHALLENGE (Adult Congenital Heart Disease Registry. A registry from Hellenic Cardiology Society) was initiated in January 2012. Patients with structural CHD older than 16years old were enrolled by 16 specialized centers nationwide. Out of a population of 2115 patients with ACHD, who have been registered, (mean age 38years (SD 16), 52% women), 47% were classified as suffering from mild, 37% from moderate and 15% from severe ACHD. Atrial septal defect (ASD) was the most prevalent diagnosis (33%). The vast majority of ACHD patients (92%) was asymptomatic or mildly symptomatic (NYHA class I/II). The most symptomatic patients were suffering from an ASD, most often the elderly or those under targeted therapy for pulmonary arterial hypertension. Elderly patients (>60years old) accounted for 12% of the ACHD population. Half of patients had undergone at least one open-heart surgery, while 39% were under cardiac medications (15% under antiarrhythmic drugs, 16% under anticoagulants, 16% under medications for heart failure and 4% under targeted therapy for pulmonary arterial hypertension). ACHD patients are an emerging patient population and national prospective registries such as CHALLENGE are of unique importance in order to identify the ongoing needs of these patients and match them with the appropriate resource allocation. Copyright © 2017 Elsevier B.V. All rights reserved.

  20. California’s Parkinson’s Disease Registry Pilot Project - Coordination Center and Northern California Ascertainment

    Science.gov (United States)

    2014-03-01

    www.capdregistry.org) and email box were created and launched in March, 2008. Requests for information about the registry from patients, colleagues and...d. Review and determination of study diagnosis. For cases with multiple parkinsonism codes (i.e. diagnosed with more than one of 332.0, 333.0...individuals (10.7%) had ICD-9 codes for other forms of neurodegenerative parkinsonism . The remaining 2.1% were primarily drug- induced parkinsonism

  1. Classification of topographical pattern of spasticity in cerebral palsy: a registry perspective.

    Science.gov (United States)

    Reid, Susan M; Carlin, John B; Reddihough, Dinah S

    2011-01-01

    This study used data from a population-based cerebral palsy (CP) registry and systematic review to assess the amount of heterogeneity between registries in topographical patterns when dichotomised into unilateral (USCP) and bilateral spastic CP (BSCP), and whether the terms diplegia and quadriplegia provide useful additional epidemiological information. From the Victorian CP Register, 2956 individuals (1658 males, 1298 females), born 1970-2003, with spastic CP were identified. The proportions with each topographical pattern were analysed overall and by gestational age. Binary logistic regression analysis was used to assess temporal trends. For the review, data were systematically collected on topographical patterns from 27 registries. Estimates of heterogeneity were obtained, overall and by region, reporting period and definition of quadriplegia. Among individuals born <32 weeks, 48% had diplegia, whereas the proportion for children born ≥ 32 weeks was 24% (p < 0.001). Evidence was weak for a temporal trend in the relative proportions of USCP and BSCP (p = 0.038), but much clearer for an increase in the proportion of spastic diplegia relative to quadriplegia (p < 0.001). The review revealed wide variations across studies in the proportion of diplegia (range 34-90%) and BSCP (range 51-86%). These findings argue against a topographical classification based solely on laterality. Copyright © 2011 Elsevier Ltd. All rights reserved.

  2. Cancer registries and monitoring the impact of prophylactic human papillomavirus vaccines: the potential role.

    Science.gov (United States)

    Saraiya, Mona; Goodman, Marc T; Datta, S Deblina; Chen, Vivien W; Wingo, Phyllis A

    2008-11-15

    The recent US Food and Drug Administration licensure of a prophylactic vaccine against oncogenic human papillomavirus (HPV) types 16 and 18, the first of its kind, poses unique challenges in postmarketing vaccine surveillance, especially in measuring vaccine effectiveness against biologic endpoints of HPV infection. Historically, the national system of population-based cancer registries in the US has provided high-quality data on cancer incidence and mortality for the most important biologic endpoints, namely, anogenital cancers and some oral cavity/oropharyngeal cancers. There also has been some data collection on cancer precursors; however, this activity has been inconsistent and of lower priority. Because effectiveness against HPV-associated cancers will not be measurable for several decades, strengthening and possibly expanding the capacity of registries to collect precancer data, which are earlier manifestations of infection, must be considered. Collecting type-specific data on HPV-associated precancers and cancers. While keeping in mind the current limitations of registry operations, they discuss resources that may be needed to implement and sustain these types of activities.

  3. Mutational analysis and genotype-phenotype relation in familial hypercholesterolemia: The SAFEHEART registry.

    Science.gov (United States)

    Bourbon, Mafalda; Alves, Ana Catarina; Alonso, Rodrigo; Mata, Nelva; Aguiar, Pedro; Padró, Teresa; Mata, Pedro

    2017-07-01

    Familial hypercholesterolemia (FH) is an autosomal dominant disease of cholesterol metabolism that confers an increased risk of premature atherosclerotic cardiovascular disease (ASCVD). Therefore, early identification and treatment of these patients can improve prognosis and reduce the burden of cardiovascular mortality. The aim of this work was to perform the mutational analysis of the SAFEHEART (Spanish Familial Hypercholesterolaemia Cohort Study) registry. The study recruited 2938 individuals with genetic diagnosis of FH belonging to 775 families. Statistical analysis was performed using SPSS v23. A total of 194 variants have been detected in this study, 24 of them were never described before. About 88% of the patients have a pathogenic or likely pathogenic variant. Patients with null variants have a more severe phenotype than patients with defective variants, presenting with significantly higher levels of atherogenic particles (total cholesterol, LDL-cholesterol and apolipoprotein B). This study shows the molecular characteristics of the FH patients included in the SAFEHEART registry and the relationship with the phenotypic expression. The majority of the genetic variants are considered to be pathogenic or likely pathogenic, which confers a high level of confidence to the entry and follow-up data analysis performed with this registry concerning FH patients' prognosis, treatment and survival. Copyright © 2017 Elsevier B.V. All rights reserved.

  4. GCK-MODY in the US National Monogenic Diabetes Registry: frequently misdiagnosed and unnecessarily treated.

    Science.gov (United States)

    Carmody, David; Naylor, Rochelle N; Bell, Charles D; Berry, Shivani; Montgomery, Jazzmyne T; Tadie, Elizabeth C; Hwang, Jessica L; Greeley, Siri Atma W; Philipson, Louis H

    2016-10-01

    GCK-MODY leads to mildly elevated blood glucose typically not requiring therapy. It has been described in all ethnicities, but mainly in Caucasian Europeans. Here we describe our US cohort of GCK-MODY. We examined the rates of detection of heterozygous mutations in the GCK gene in individuals referred to the US Monogenic Diabetes Registry with a phenotype consistent with GCK-MODY. We also assessed referral patterns, treatment and demography, including ethnicity, of the cohort. Deleterious heterozygous GCK mutations were found in 54.7 % of Registry probands selected for GCK sequencing for this study. Forty-nine percent were previously unnecessarily treated with glucose-lowering agents, causing hypoglycemia and other adverse effects in some of the subjects. The proportion of probands found to have a GCK mutation through research-based testing was similar across each ethnic group. However, together African-American, Latino and Asian subjects represented only 20.5 % of screened probands and 17.2 % of those with GCK-MODY, despite higher overall diabetes prevalence in these groups. Our data show that a high detection rate of GCK-MODY is possible based on clinical phenotype and that prior to genetic diagnosis, a large percentage are inappropriately treated with glucose-lowering therapies. We also find low minority representation in our Registry, which may be due to disparities in diagnostic diabetes genetic testing and is an area needing further investigation.

  5. The Polish National Registry for Fetal Cardiac Pathology: organization, diagnoses, management, educational aspects and telemedicine endeavors.

    Science.gov (United States)

    Slodki, Maciej; Szymkiewicz-Dangel, Joanna; Tobota, Zdzislaw; Seligman, Neil S; Weiner, Stuart; Respondek-Liberska, Maria

    2012-05-01

    We describe the National Registry for Fetal Cardiac Pathology, a program under the Polish Ministry of Health aimed at improving the prenatal diagnosis, care, and management of congenital heart disease (CHD). An online database was created to prospectively record diagnosis, prenatal care, delivery, follow-up, and still images and video for fetuses with CHD. A certification program in fetal cardiac ultrasound was also implemented. Optimal screening and referral centers were identified by number of fetuses entered in the Registry yearly by each center. From 2004 to 2009, 2910 fetuses with CHD were registered (2473 structural, 437 functional anomalies). The most common reasons for referral for fetal echocardiography were abnormal four-chamber view (56.0%) and extra-cardiac anomalies (8.2% ), while the most common diagnoses were atrioventricular septal defects (10.2%) and hypoplastic left heart syndrome (9.7%). Prenatal diagnosis increased yearly, from 10.0% of neonatal diagnoses in 2003 to 38.0% in 2008. From inception of the registry up to 2009 there has been a fourfold increase in the number of neonates referred for cardiac surgery in whom the condition was prenatally diagnosed. Equally important achievements include the establishment of a certification program for fetal echocardiography and the organization of prenatal and neonatal management. © 2012 John Wiley & Sons, Ltd.

  6. United States transuranium and uranium registries. Annual report, October 1, 1995--September 30, 1996

    Energy Technology Data Exchange (ETDEWEB)

    Kathren, R.L.; Ehrhart, S.M. [eds.

    1997-04-01

    This Annual Report covers the period October 1, 1995 through September 30, 1996, and includes both scientific and administrative activities. As of September 30, 1996, the Registries had a total of 886 registrants of whom 350 were deceased and 292 classified as active. An anticipated funding cut of approximately 35% for the period beginning October 1, 1996, necessitated some staff cuts, but it is anticipated that the Registries core research will be maintained albeit at a somewhat slower pace. The Registries received approximately 60 public information requests or inquiries ranging over a wide range of topics, about a third of which came from the media or official agencies, including Congress. Specific noteworthy inquiries were received from the President`s Advisory Committee on the Gulf War Veterans with regard to uranium biokinetics and toxicity, and from the County of Los Angeles and the State of California with regard to the management and dosimetry of two separate instances of acute accidental intakes of {sup 241}Am.

  7. Rapid analysis of hyperbaric oxygen therapy registry data for reimbursement purposes: Technical communication.

    Science.gov (United States)

    Fife, Caroline E; Gelly, Helen; Walker, David; Eckert, Kristen Allison

    2016-01-01

    To explain how Hyperbaric Oxygen Therapy Registry (HBOTR) data of the US Wound Registry (USWR) helped establish a fair analysis of the physician work of hyperbaric chamber supervision for reimbursement purposes. We queried HBOTR data from January 1, 2013, to December 31, 2013, on patient comorbidities and medications as well as the number of hyperbaric oxygen (HBO₂) therapy treatments supervised per physician per day from all hyperbaric facilities participating in the USWR that had been using the electronic medical record (EHR) for more than six months and had passed data completeness checks. Among 11,240 patients at the 87 facilities included, the mean number of comorbidities and medications was 10 and 12, respectively. The mean number of HBO₂ treatments supervised per physician per day was 3.7 at monoplace facilities and 5.4 at multiplace facilities. Following analysis of these data by the RUC, the reimbursement rate of chamber supervision was decreased to $112.06. Patients undergoing HBO₂ therapy generally suffer from multiple, serious comorbidities and require multiple medications, which increase the risk of HBO₂ and necessitate the presence of a properly trained hyperbaric physician. The lack of engagement by hyperbaric physicians in registry reporting may result in lack of adequate data being available to counter future challenges to reimbursement.

  8. Regorafenib in the Real-Life Clinical Practice: Data from the Czech Registry.

    Science.gov (United States)

    Kopeckova, Katerina; Buchler, Tomas; Bortlicek, Zbynek; Hejduk, Karel; Chloupkova, Renata; Melichar, Bohuslav; Pokorna, Petra; Tomasek, Jiri; Linke, Zdenek; Petruzelka, Lubos; Kiss, Igor; Prausova, Jana

    2017-02-01

    To describe the use of regorafenib for the treatment of metastatic colorectal cancer (mCRC) in clinical practice in the Czech Republic, and to describe the clinical outcomes of patients in terms of safety and survival. The data of patients treated with regorafenib were extracted from the national CORECT registry. The CORECT registry is a non-interventional post-marketing database, gathering information about patients with CRC and treated with targeted agents. Twenty oncology centres in the Czech Republic contributed to this registry. Collected data included patients' characteristics, disease history, cancer treatments, response to treatments and safety. A total of 148 patients treated with regorafenib in clinical practice were analysed. At regorafenib initiation, almost all patients were fully active or slightly restricted in physical activity. Regorafenib was not administered as first-line treatment in any patient. Median progression-free survival was 3.5 months and median overall survival was 9.3 months. One-year survival rate was 44.6 %. Four partial responses were observed and 51 stable diseases. Progression was observed in 66 patients (44.6 %). The main reported adverse events were skin toxicity (5.4 %) and fatigue (2.0 %). Regorafenib is a well-established treatment for pretreated patients with mCRC, however real-life data are scarce. Our results demonstrated slightly better efficacy of regorafenib and better safety profile in patients with mCRC compared to the randomised trials.

  9. Airway registry and training curriculum improve intubation outcomes in the intensive care unit

    Directory of Open Access Journals (Sweden)

    Malo J

    2018-04-01

    Full Text Available Background: Intubation in critically ill patients remains a highly morbid procedure, and the optimal approach is unclear. We sought to improve the safety of intubation by implementing a simulation curriculum and monitoring performance with an airway registry. Methods and Methods: This is a prospective, single-center observational study of all intubations performed by the medical intensive care unit (ICU team over a five-year period. All fellows take part in a simulation curriculum to improve airway management performance and minimize complications. An airway registry form is completed immediately after each intubation to capture relevant patient, operator, and procedural data. Results: Over a five-year period, the medical ICU team performed 1411 intubations. From Year 1 to Year 5, there were significant increases in first-attempt success (72.6 vs. 88.0%, p<0.001, use of video laryngoscopy (72.3 vs. 93.5%, p<0.001, and use of neuromuscular blocking agents (73.5 vs. 88.4%, p<0.001. There were concurrent decreases in rates of desaturation (25.6 vs. 17.1%, p=0.01 and esophageal intubations (5 vs. 1%, p=0.009. Low rates of hypotension (8.3% and cardiac arrest (0.6% were also observed. Conclusions: The safety of intubation in critically ill patients can be markedly improved through joint implementation of an airway registry and simulation curriculum.

  10. Implementation of a prospective pregnancy registry for antiretroviral based HIV prevention trials.

    Science.gov (United States)

    Mhlanga, Felix G; Noguchi, Lisa; Balkus, Jennifer E; Kabwigu, Samuel; Scheckter, Rachel; Piper, Jeanna; Watts, Heather; O'Rourke, Colin; Torjesen, Kristine; Brown, Elizabeth R; Hillier, Sharon L; Beigi, Richard

    2018-02-01

    Safety data on pregnancy and fetal outcomes among women in HIV prevention trials are urgently needed to inform use of effective antiretroviral agents for HIV prevention. We describe an effective, efficient, and novel method to prospectively collect perinatal safety data concurrent with on-going parent clinical trials. The Microbicide Trials Network (MTN)-016 study is a multinational prospective pregnancy exposure registry designed to capture pregnancy and neonatal outcomes. Studies currently contributing data to this registry included phase I and II safety trials with planned exposures to candidate HIV prevention agents, as well as phase IIB and III efficacy trials capturing data on pregnancy and infant outcomes following inadvertent fetal exposure during study participation. To date, participants from two phase I studies and two effectiveness trials have participated in MTN-016, resulting in 420 pregnant women and 381 infants enrolled. Infant retention has been high, with 329 of 381 (86%) infants completing the 12-month follow-up visit. In a research setting context, it is feasible to establish and implement a prospective, multinational HIV chemoprophylaxis pregnancy registry that will generate pregnancy exposure data in a robust fashion.

  11. Implementation of a trauma registry in a brazilian public hospital: the first 1,000 patients

    Directory of Open Access Journals (Sweden)

    Paulo Roberto Lima Carreiro

    Full Text Available OBJECTIVE: Show the steps of a Trauma Registry (TR implementation in a Brazilian public hospital and evaluate the initial data from the database.METHODS: Descriptive study of the a TR implementation in João XXIII Hospital (Hospital Foundation of the state of Minas Gerais and analysis of the initial results of the first 1,000 patients.RESULTS: The project was initiated in 2011 and from January 2013 we began collecting data for the TR. In January 2014 the registration of the first 1000 patients was completed. The greatest difficulties in the TR implementation were obtaining funds to finance the project and the lack of information within the medical records. The variables with the lowest completion percentage on the physiological conditions were: pulse, blood pressure, respiratory rate and Glasgow coma scale. Consequently, the Revised Trauma Score (RTS could be calculated in only 31% of cases and the TRISS methodology applied to 30.3% of patients. The main epidemiological characteristics showed a predominance of young male victims (84.7% and the importance of aggression as a cause of injuries in our environment (47.5%, surpassing traffic accidents. The average length of stay was 6 days, and mortality 13.7%.CONCLUSION: Trauma registries are invaluable tools in improving the care of trauma victims. It is necessary to improve the quality of data recorded in medical records. The involvement of public authorities is critical for the successful implementation and maintenance of trauma registries in Brazilian hospitals.

  12. 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.

  13. Using a statistical process control chart during the quality assessment of cancer registry data.

    Science.gov (United States)

    Myles, Zachary M; German, Robert R; Wilson, Reda J; Wu, Manxia

    2011-01-01

    Statistical process control (SPC) charts may be used to detect acute variations in the data while simultaneously evaluating unforeseen aberrations that may warrant further investigation by the data user. Using cancer stage data captured by the Summary Stage 2000 (SS2000) variable, we sought to present a brief report highlighting the utility of the SPC chart during the quality assessment of cancer registry data. Using a county-level caseload for the diagnosis period of 2001-2004 (n=25,648), we found the overall variation of the SS2000 variable to be in control during diagnosis years of 2001 and 2002, exceeded the lower control limit (LCL) in 2003, and exceeded the upper control limit (UCL) in 2004; in situ/localized stages were in control throughout the diagnosis period, regional stage exceeded UCL in 2004, and distant stage exceeded the LCL in 2001 and the UCL in 2004. Our application of the SPC chart with cancer registry data illustrates that the SPC chart may serve as a readily available and timely tool for identifying areas of concern during the data collection and quality assessment of central cancer registry data.

  14. Agreement between Rheumatologist and Patient-reported Adherence to Methotrexate in a US Rheumatoid Arthritis Registry.

    Science.gov (United States)

    Curtis, Jeffrey R; Bharat, Aseem; Chen, Lang; Greenberg, Jeffrey D; Harrold, Leslie; Kremer, Joel M; Sommers, Tanya; Pappas, Dimitrios

    2016-06-01

    Rheumatologists have limited tools to assess medication adherence. The extent to which methotrexate (MTX) adherence is overestimated by rheumatologists is unknown. We deployed an Internet survey to patients with rheumatoid arthritis (RA) participating in a US registry. Patient self-report was the gold standard compared to MTX recorded in the registry. Response rate to the survey was 44%. Of 228 patients whose rheumatologist reported current MTX at the time of the most recent registry visit, 45 (19.7%) had discontinued (n = 19, 8.3%) or missed ≥ 1 dose in the last month (n = 26, 11.4%). For the subgroup whose rheumatologist also confirmed at the next visit that they were still taking MTX (n = 149), only 2.6% reported not taking it, and 10.7% had missed at least 1 dose. MTX use was misclassified for 13%-20% of patients, mainly because of 1 or more missed doses rather than overt discontinuation. Clinicians should be aware of suboptimal adherence when assessing MTX response.

  15. Charting improvements in US registry HLA typing ambiguity using a typing resolution score.

    Science.gov (United States)

    Paunić, Vanja; Gragert, Loren; Schneider, Joel; Müller, Carlheinz; Maiers, Martin

    2016-07-01

    Unrelated stem cell registries have been collecting HLA typing of volunteer bone marrow donors for over 25years. Donor selection for hematopoietic stem cell transplantation is based primarily on matching the alleles of donors and patients at five polymorphic HLA loci. As HLA typing technologies have continually advanced since the beginnings of stem cell transplantation, registries have accrued typings of varied HLA typing ambiguity. We present a new typing resolution score (TRS), based on the likelihood of self-match, that allows the systematic comparison of HLA typings across different methods, data sets and populations. We apply the TRS to chart improvement in HLA typing within the Be The Match Registry of the United States from the initiation of DNA-based HLA typing to the current state of high-resolution typing using next-generation sequencing technologies. In addition, we present a publicly available online tool for evaluation of any given HLA typing. This TRS objectively evaluates HLA typing methods and can help define standards for acceptable recruitment HLA typing. Copyright © 2016 American Society for Histocompatibility and Immunogenetics. Published by Elsevier Inc. All rights reserved.

  16. The EMBARC European Bronchiectasis Registry: protocol for an international observational study

    Directory of Open Access Journals (Sweden)

    James D. Chalmers

    2016-01-01

    Full Text Available Bronchiectasis is one of the most neglected diseases in respiratory medicine. There are no approved therapies and few large-scale, representative epidemiological studies. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration registry is a prospective, pan-European observational study of patients with bronchiectasis. The inclusion criterion is a primary clinical diagnosis of bronchiectasis consisting of: 1 a clinical history consistent with bronchiectasis; and 2 computed tomography demonstrating bronchiectasis. Core exclusion criteria are: 1 bronchiectasis due to known cystic fibrosis; 2 age <18 years; and 3 patients who are unable or unwilling to provide informed consent. The study aims to enrol 1000 patients by April 2016 across at least 20 European countries, and 10 000 patients by March 2020. Patients will undergo a comprehensive baseline assessment and will be followed up annually for up to 5 years with the goal of providing high-quality longitudinal data on outcomes, treatment patterns and quality of life. Data from the registry will be available in the form of annual reports. and will be disseminated in conference presentations and peer-reviewed publications. The European Bronchiectasis Registry aims to make a major contribution to understanding the natural history of the disease, as well as guiding evidence-based decision making and facilitating large randomised controlled trials.

  17. Facilitating enrollment in a Cancer Registry through modified consent procedures: a pilot study.

    Science.gov (United States)

    Mazanec, Susan; Daly, Barbara; Meropol, Neal J; Step, Mary

    2012-12-01

    Research registries are increasingly important in medical research and are essential to the mission of cancer centers. However, designing enrollment and data collection procedures that are consistent with ethical norms and regulatory requirements yet are efficient and cost effective is a major challenge. Current standard consent forms can be a barrier to enrollment because of their length, multiple components, and technical language. We pilot tested an IRB-approved registry booklet and simplified one-page, tiered consent form, allowing for choice of extent of participation. The booklet was mailed to patients with breast cancer as part of their routine information packet prior to the first clinic appointment. A research nurse met with 27 patients at initial treatment to review the booklet, answer questions, obtain informed consent, and collect quality of life data. The consent rate was 78% with 21 patients enrolling in the study. Twelve of the 21 patients (57%) did not read the booklet prior to the visit. The 9 patients (43%) who had read the booklet prior to arrival found it easy to understand. The multi-stage, simplified consent process and data collection were acceptable to these patients and readily integrated into clinical operations. An easy-to-read registry booklet may be an effective guide for discussion, but in-person consent procedures and further testing of the approach are required.

  18. Utilizing national and international registries to enhance pre-market medical device regulatory evaluation.

    Science.gov (United States)

    Yue, Lilly Q; Campbell, Gregory; Lu, Nelson; Xu, Yunling; Zuckerman, Bram

    2016-01-01

    Regulatory decisions are made based on the assessment of risk and benefit of medical devices at the time of pre-market approval and subsequently, when post-market risk-benefit balance needs reevaluation. Such assessments depend on scientific evidence obtained from pre-market studies, post-approval studies, post-market surveillance studies, patient perspective information, as well as other real world data such as national and international registries. Such registries provide real world evidence and are playing a more and more important role in enhancing the safety and effectiveness evaluation of medical devices. While these registries provide large quantities of data reflecting real world practice and can potentially reduce the cost of clinical trials, challenges arise concerning (1) data quality adequate for regulatory decision-making, (2) bias introduced at every stage and aspect of study, (3) scientific validity of study designs, and (4) reliability and interpretability of study results. This article will discuss related statistical and regulatory challenges and opportunities with examples encountered in medical device regulatory reviews.

  19. Implementation of a trauma registry in a Brazilian public hospital: the first 1,000 patients.

    Science.gov (United States)

    Carreiro, Paulo Roberto Lima; Drumond, Domingos André Fernandes; Starling, Sizenando Vieira; Moritz, Mônica; Ladeira, Roberto Marini

    2014-01-01

    Show the steps of a Trauma Registry (TR) implementation in a Brazilian public hospital and evaluate the initial data from the database. Descriptive study of the a TR implementation in João XXIII Hospital (Hospital Foundation of the state of Minas Gerais) and analysis of the initial results of the first 1,000 patients. The project was initiated in 2011 and from January 2013 we began collecting data for the TR. In January 2014 the registration of the first 1000 patients was completed. The greatest difficulties in the TR implementation were obtaining funds to finance the project and the lack of information within the medical records. The variables with the lowest completion percentage on the physiological conditions were: pulse, blood pressure, respiratory rate and Glasgow coma scale. Consequently, the Revised Trauma Score (RTS) could be calculated in only 31% of cases and the TRISS methodology applied to 30.3% of patients. The main epidemiological characteristics showed a predominance of young male victims (84.7%) and the importance of aggression as a cause of injuries in our environment (47.5%), surpassing traffic accidents. The average length of stay was 6 days, and mortality 13.7%. Trauma registries are invaluable tools in improving the care of trauma victims. It is necessary to improve the quality of data recorded in medical records. The involvement of public authorities is critical for the successful implementation and maintenance of trauma registries in Brazilian hospitals.

  20. United States transuranium registry: Annual report, 1 October 1987--30 September 1988

    International Nuclear Information System (INIS)

    Swint, M.J.; Kathren, R.L.

    1989-04-01

    The primary objective this year was to initiate evaluation of Registry Case 246, an individual who had incurred the largest recorded human deposition of Am-241 as a result of a chemical explosion in a glove box. Because of the potential importance of this case, invitations for collaborative research were solicited from the scientific community. Other projects during the year included an international intercomparison of radiochemical analysis for actinides in tissue, a comparison of in-vivo and postmortem deposition estimates, a study of the fractionation of Am-241 and Pu-239+40 in skeleton and live, preliminary evaluation and modelling of the second whole body donation to the Registry, and a study of the distribution of actinides in lung and associated lymph nodes. The Registry was invited to participate in two international meetings during the year presenting evaluations and recommendations based on data gathered over more than 20 years of operation. A list of the papers presented at these meetings is included. 17 refs