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.

Development of the cancer registration system in Belarus

International Nuclear Information System (INIS)

Okeanov, A.E.; Polyakov, S.M.; Sobolev, A.V.; Winkelmann, R.A.; Storm, H.H.

1996-01-01

Cancer registration was established in Belarus in 1953, however was not complete until the 1970's. In 1973 a computerized central cancer registry was established (files available only from 1978) based on coded and anonymous information received from each of the 12 oncological dispensaries in the country. In 1985 a computer system of dispensary control for cancer patients was set up in the oncological dispensaries in Belarus, whereby identification of individual cancer patients in the cancer registry was made possible. The Belarussian cancer registry records all cases of cancer including those of the lymph-hematopoietic system, and carcinoma in situ. The registry is person-based with information on all tumors and their treatment in a given individual. Coding and classification is carried out in accordance with ICD-9. For histology a local classification is used. Currently the registration system is under modernization in order to achieve full correspondence with internationally accepted standards and for the purpose of easy linkage to the Belarussian Chernobyl Registry

[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).

Registration of Space Objects

Science.gov (United States)

Schmidt-Tedd, Bernhard

2017-07-01

Space objects are subject to registration in order to allocate "jurisdiction and control" over those objects in the sovereign-free environment of outer space. This approach is similar to the registration of ships in view of the high sea and for aircrafts with respect to the international airspace. Registration is one of the basic principles of space law, starting with UN General Assembly Resolution 1721 B (XVI) of December 20, 1961, followed by Resolution 1962 (XVIII) of December 13, 1963, then formulated in Article VIII of the Outer Space Treaty of 1967 and as specified in the Registration Convention of 1975. Registration of space objects can be seen today as a principle of customary international law, relevant for each spacefaring state. Registration is divided into a national and an international level. The State Party establishes a national registry for its space objects, and those registrations have to be communicated via diplomatic channel to the UN Register of space objects. This UN Register is handled by the UN Office for Outer Space Affairs (UNOOSA) and is an open source of information for space objects worldwide. Registration is linked to the so-called launching state of the relevant space object. There might be more than one launching state for the specific launch event, but only one state actor can register a specific space object. The state of registry gains "jurisdiction and control" over the space object and therefore no double registration is permissible. Based on the established UN Space Law, registration practice was subject to some adaptions due to technical developments and legal challenges. After the privatization of the major international satellite organizations, a number of non-registrations had to be faced. The state actors reacted with the UN Registration Practice Resolution of 2007 as elaborated in the Legal Subcommittee of UNCOPUOS, the Committee for the Peaceful Use of Outer Space. In this context an UNOOSA Registration Information

Clinical trial registration in oral health journals.

Science.gov (United States)

Smaïl-Faugeron, V; Fron-Chabouis, H; Durieux, P

2015-03-01

Prospective registration of randomized controlled trials (RCTs) represents the best solution to reporting bias. The extent to which oral health journals have endorsed and complied with RCT registration is unknown. We identified journals publishing RCTs in dentistry, oral surgery, and medicine in the Journal Citation Reports. We classified journals into 3 groups: journals requiring or recommending trial registration, journals referring indirectly to registration, and journals providing no reference to registration. For the 5 journals with the highest 2012 impact factors in each group, we assessed whether RCTs with results published in 2013 had been registered. Of 78 journals examined, 32 (41%) required or recommended trial registration, 19 (24%) referred indirectly to registration, and 27 (35%) provided no reference to registration. We identified 317 RCTs with results published in the 15 selected journals in 2013. Overall, 73 (23%) were registered in a trial registry. Among those, 91% were registered retrospectively and 32% did not report trial registration in the published article. The proportion of trials registered was not significantly associated with editorial policies: 29% with results in journals that required or recommended registration, 15% in those that referred indirectly to registration, and 21% in those providing no reference to registration (P = 0.05). Less than one-quarter of RCTs with results published in a sample of oral health journals were registered with a public registry. Improvements are needed with respect to how journals inform and require their authors to register their trials. © International & American Associations for Dental Research.

The dispense of legal reserve in the registration of property: decrease of environmental protection?

Directory of Open Access Journals (Sweden)

Thiago de Miranda Carneiro

2016-12-01

Full Text Available It is intended to analyze the rural environmental registry and exemption from the registration of the legal reserve on the basis of Law 12.651/12. They will be addressed elements of environmental protection and real estate to handle the revocation of registration of the legal reserve in real estate registry and their inclusion in the CAR, as well as property registration paper and registral advertising in order to ascertain the legal traffic safety real estate. We used exploratory method  through literature and document analysis starting at the constitutional and environmental law through the registral law.

Promoting deceased organ and tissue donation registration in family physician waiting rooms (RegisterNow-1 trial): study protocol for a pragmatic, stepped-wedge, cluster randomized controlled registry.

Science.gov (United States)

Li, Alvin H; Garg, Amit X; Prakash, Versha; Grimshaw, Jeremy M; Taljaard, Monica; Mitchell, Joanna; Matti, Danny; Linklater, Stefanie; Naylor, Kyla L; Dixon, Stephanie; Faulds, Cathy; Bevan, Rachel; Getchell, Leah; Knoll, Greg; Kim, S Joseph; Sontrop, Jessica; Bjerre, Lise M; Tong, Allison; Presseau, Justin

2017-12-21

There is a worldwide shortage of organs available for transplant, leading to preventable mortality associated with end-stage organ disease. While most citizens in many countries with an intent-to-donate "opt-in" system support organ donation, registration rates remain low. In Canada, most Canadians support organ donation but less than 25% in most provinces have registered their desire to donate their organs when they die. The family physician office is a promising yet underused setting in which to promote organ donor registration and address known barriers and enablers to registering for deceased organ and tissue donation. We developed a protocol to evaluate an intervention to promote registration for organ and tissue donation in family physician waiting rooms. This protocol describes a planned, stepped-wedge, cluster randomized registry trial in six family physician offices in Ontario, Canada to evaluate the effectiveness of reception staff providing patients with a pamphlet that addresses barriers and enablers to registration including a description of how to register for organ donation. An Internet-enabled tablet will also be provided in waiting rooms so that interested patients can register while waiting for their appointments. Family physicians and reception staff will be provided with training and/or materials to support any conversations about organ donation with their patients. Following a 2-week control period, the six offices will cross sequentially into the intervention arm in randomized sequence at 2-week intervals until all offices deliver the intervention. The primary outcome will be the proportion of patients visiting the office who are registered organ donors 7 days following their office visit. We will evaluate this outcome using routinely collected registry data from provincial administrative databases. A post-trial qualitative evaluation process will assess the experiences of reception staff and family physicians with the intervention and the

Practical and conceptual issues of clinical trial registration for Brazilian researchers

Directory of Open Access Journals (Sweden)

Carolina Gomes Freitas

Full Text Available CONTEXT AND OBJECTIVE: Clinical trial registration is a prerequisite for publication in respected scientific journals. Recent Brazilian regulations also require registration of some clinical trials in the Brazilian Clinical Trials Registry (ReBEC but there is little information available about practical issues involved in the registration process. This article discusses the importance of clinical trial registration and the practical issues involved in this process. DESIGN AND SETTING: Descriptive study conducted by researchers within a postgraduate program at a public university in São Paulo, Brazil. METHODS: Information was obtained from clinical trial registry platforms, article reference lists and websites (last search: September 2014 on the following topics: definition of a clinical trial, history, purpose and importance of registry platforms, the information that should be registered and the registration process. RESULTS: Clinical trial registration aims to avoid publication bias and is required by Brazilian journals indexed in LILACS and SciELO and by journals affiliated to the International Committee of Medical Journal Editors (ICMJE. Recent Brazilian regulations require that all clinical trials (phases I to IV involving new drugs to be marketed in this country must be registered in ReBEC. The pros and cons of using different clinical trial registration platforms are discussed. CONCLUSIONS: Clinical trial registration is important and various mechanisms to enforce its implementation now exist. Researchers should take into account national regulations and publication requirements when choosing the platform on which they will register their trial.

75 FR 51623 - Registration of Mortgage Loan Originators

Science.gov (United States)

2010-08-23

... online registration system, the Nationwide Mortgage Licensing System and Registry (Registry). \\1\\ The S.A... benefit only small institutions. \\24\\ 12 U.S.C. 2801 et seq. \\25\\ See 12 CFR 203.2 (Regulation C). Other... limit--rendering gaming opportunities essentially unrealistic. Many commenters noted the complexity of...

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.

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

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.

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...

Modeling cancer registration processes with an enhanced activity diagram.

Science.gov (United States)

Lyalin, D; Williams, W

2005-01-01

Adequate instruments are needed to reflect the complexity of routine cancer registry operations properly in a business model. The activity diagram is a key instrument of the Unified Modeling Language (UML) for the modeling of business processes. The authors aim to improve descriptions of processes in cancer registration, as well as in other public health domains, through the enhancements of an activity diagram notation within the standard semantics of UML. The authors introduced the practical approach to enhance a conventional UML activity diagram, complementing it with the following business process concepts: timeline, duration for individual activities, responsibilities for individual activities within swimlanes, and descriptive text. The authors used an enhanced activity diagram for modeling surveillance processes in the cancer registration domain. Specific example illustrates the use of an enhanced activity diagram to visualize a process of linking cancer registry records with external mortality files. Enhanced activity diagram allows for the addition of more business concepts to a single diagram and can improve descriptions of processes in cancer registration, as well as in other domains. Additional features of an enhanced activity diagram allow to advance the visualization of cancer registration processes. That, in turn, promotes the clarification of issues related to the process timeline, responsibilities for particular operations, and collaborations among process participants. Our first experiences in a cancer registry best practices development workshop setting support the usefulness of such an approach.

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...

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

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.

Registration status and outcome reporting of trials published in core headache medicine journals.

Science.gov (United States)

Rayhill, Melissa L; Sharon, Roni; Burch, Rebecca; Loder, Elizabeth

2015-11-17

To evaluate randomized controlled trial (RCT) registration and outcome reporting compliance in core headache medicine journals. We identified RCTs published in core journals (Headache, Cephalalgia, and the Journal of Headache and Pain) from 2005 through 2014. We searched articles for trial registration numbers, which were verified in the corresponding trial registry. We categorized trial funding sources as industry, academic, government, or mixed. We contacted corresponding authors to assess reasons for nonregistration. We evaluated whether primary outcomes in trial registries matched those in corresponding publications. The journals published 225 RCTs over the study period. Fifty-eight of 225 (26%) reported a trial registration number in the article that could be linked to a corresponding registry entry. Trial registration rates increased over the 9 years of the study. Forty-six of 118 (39%) of industry-funded studies were registered compared with 27% of academic and 0% of government-funded studies. Only 5% of RCTs were prospectively registered, reported primary outcomes identical to those in the trial registry, and did not report unacknowledged post hoc outcomes. The most common reason for nonregistration was lack of awareness. Only about a quarter of the articles published in the core headache medicine journals are compliant with trial registration, but compliance has increased over time. Selective reporting of outcomes remains a problem, and very few trials met all 3 reporting standards assessed in this study. Efforts to improve the quality of trial reporting in the headache literature should continue. © 2015 American Academy of Neurology.

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

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...

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...

[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.

Reasons for (not) signing the state registry: surveying Department of Motor Vehicles customers in New York state.

Science.gov (United States)

Feeley, Thomas Hugh; Reynolds-Tylus, Tobias; Anker, Ashley E; Evans, Melanie

2014-03-01

Prior research examining rationales for enrolling as an organ donor is biased because of its reliance on college student samples and retrospective recall. To characterize New York state residents' registry enrollment decisions in close proximity to a registration opportunity. -Surveys were conducted with customers exiting Department of Motor Vehicle offices. A total of 1325 customers were surveyed upon exiting 1 of 18 Department of Motor Vehicle offices spanning 9 counties. Customers making donation-relevant transactions (ie, license renewal/registration) reported whether they had registered as a donor that day, and all other customers reported whether they had registered as a donor in the past. Customers reported reasons to justify their enrollment decision through short interview questions. Among current donation-relevant transactions (n = 299), 27% reported enrolling in the registry. Of remaining customers, 39% reported enrolling in the state registry in the past. For those who elected not to enroll, many failed to communicate a reason for their decision, or reported a lack of opportunity to sign or decisional uncertainty. Among enrollees, reasons for registration included the altruistic benefits of donation, prior registration, personal experience with donation, and rational arguments for donation. The value of point-of-decision survey data are discussed in relation to strategic efforts to promote organ donor registration.

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.

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

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

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...

Prospective registration of clinical trials in India: strategies, achievements & challenges.

Science.gov (United States)

Tharyan, Prathap

2009-02-01

This paper traces the development of the Clinical Trial Registry-India (CTRI) against the backdrop of the inequities in healthcare and the limitations in the design, conduct, regulation, oversight and reporting of clinical trials in India. It describes the scope and goals of the CTRI, the data elements it seeks and the process of registering clinical trials. It reports progress in trial registration in India and discusses the challenges in ensuring that healthcare decisions are informed by all the evidence. A descriptive survey of developments in clinical trial registration in India from publications in the Indian medical literature supplemented by first hand knowledge of these developments and an evaluation of how well clinical trials registered in the CTRI up to 10 January, 2009 comply with the requirements of the CTRI and the World Health Organization's International Clinical Trial Registry (WHO ICTRP). Considerable inequities exist within the Indian health system. Deficiencies in healthcare provision and uneven regulation of, and access to, affordable healthcare co-exists with a large private health system of uneven quality. India is now a preferred destination for outsourced clinical trials but is plagued by poor ethical oversight of the many trial sites and scant information of their existence. The CTRI's vision of conforming to international requirements for transparency and accountability but also using trial registration as a means of improving trial design, conduct and reporting led to the selection of registry-specific dataset items in addition to those endorsed by the WHO ICTRP. Compliance with these requirements is good for the trials currently registered but these trials represent only a fraction of the trials in progress in India. Prospective trial registration is a reality in India. The challenges facing the CTRI include better engagement with key stakeholders to ensure increased prospective registration of clinical trials and utilization of

Is Mandatory Prospective Trial Registration Working to Prevent Publication of Unregistered Trials and Selective Outcome Reporting? An Observational Study of Five Psychiatry Journals That Mandate Prospective Clinical Trial Registration.

Directory of Open Access Journals (Sweden)

Amelia Scott

Full Text Available To address the bias occurring in the medical literature associated with selective outcome reporting, in 2005, the International Committee of Medical Journal Editors (ICMJE introduced mandatory trial registration guidelines and member journals required prospective registration of trials prior to patient enrolment as a condition of publication. No research has examined whether these guidelines are impacting psychiatry publications. Our objectives were to determine the extent to which articles published in psychiatry journals adhering to ICMJE guidelines were correctly prospectively registered, whether there was evidence of selective outcome reporting and changes to participant numbers, and whether there was a relationship between registration status and source of funding.Any clinical trial (as defined by ICMJE published between 1 January 2009 and 31 July 2013 in the top five psychiatry journals adhering to ICMJE guidelines (The American Journal of Psychiatry, Archives of General Psychiatry/JAMA Psychiatry, Biological Psychiatry, Journal of the American Academy of Child and Adolescent Psychiatry, and The Journal of Clinical Psychiatry and conducted after July 2005 (or 2007 for two journals was included. For each identified trial, where possible we extracted trial registration information, changes to POMs between publication and registry to assess selective outcome reporting, changes to participant numbers, and funding type.Out of 3305 articles, 181 studies were identified as clinical trials requiring registration: 21 (11.6% were deemed unregistered, 61 (33.7% were retrospectively registered, 37 (20.4% had unclear POMs either in the article or the registry and 2 (1.1% were registered in an inaccessible trial registry. Only 60 (33.1% studies were prospectively registered with clearly defined POMs; 17 of these 60 (28.3% showed evidence of selective outcome reporting and 16 (26.7% demonstrated a change in participant numbers of 20% or more; only 26 (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.

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...

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.

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

Science.gov (United States)

Seidlin, Mindell; Holzman, Robert; Knight, Pamela; Korf, Bruce; Rangel Miller, Vanessa; Viskochil, David; Bakker, Annette

2017-01-01

The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis) are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF) is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015) who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

Directory of Open Access Journals (Sweden)

Mindell Seidlin

Full Text Available The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015 who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

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.

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)

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.

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.

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

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.

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.

Consistency and accuracy of diagnostic cancer codes generated by automated registration: comparison with manual registration

Directory of Open Access Journals (Sweden)

Codazzi Tiziana

2006-09-01

Full Text Available Abstract Background Automated procedures are increasingly used in cancer registration, and it is important that the data produced are systematically checked for consistency and accuracy. We evaluated an automated procedure for cancer registration adopted by the Lombardy Cancer Registry in 1997, comparing automatically-generated diagnostic codes with those produced manually over one year (1997. Methods The automatically generated cancer cases were produced by Open Registry algorithms. For manual registration, trained staff consulted clinical records, pathology reports and death certificates. The social security code, present and checked in both databases in all cases, was used to match the files in the automatic and manual databases. The cancer cases generated by the two methods were compared by manual revision. Results The automated procedure generated 5027 cases: 2959 (59% were accepted automatically and 2068 (41% were flagged for manual checking. Among the cases accepted automatically, discrepancies in data items (surname, first name, sex and date of birth constituted 8.5% of cases, and discrepancies in the first three digits of the ICD-9 code constituted 1.6%. Among flagged cases, cancers of female genital tract, hematopoietic system, metastatic and ill-defined sites, and oropharynx predominated. The usual reasons were use of specific vs. generic codes, presence of multiple primaries, and use of extranodal vs. nodal codes for lymphomas. The percentage of automatically accepted cases ranged from 83% for breast and thyroid cancers to 13% for metastatic and ill-defined cancer sites. Conclusion Since 59% of cases were accepted automatically and contained relatively few, mostly trivial discrepancies, the automatic procedure is efficient for routine case generation effectively cutting the workload required for routine case checking by this amount. Among cases not accepted automatically, discrepancies were mainly due to variations in coding practice.

Forensic Tools to Track and Connect Physical Samples to Related Data

Science.gov (United States)

Molineux, A.; Thompson, A. C.; Baumgardner, R. W.

2016-12-01

Identifiers, such as local sample numbers, are critical to successfully connecting physical samples and related data. However, identifiers must be globally unique. The International Geo Sample Number (IGSN) generated when registering the sample in the System for Earth Sample Registration (SESAR) provides a globally unique alphanumeric code associated with basic metadata, related samples and their current physical storage location. When registered samples are published, users can link the figured samples to the basic metadata held at SESAR. The use cases we discuss include plant specimens from a Permian core, Holocene corals and derived powders, and thin sections with SEM stubs. Much of this material is now published. The plant taxonomic study from the core is a digital pdf and samples can be directly linked from the captions to the SESAR record. The study of stable isotopes from the corals is not yet digitally available, but individual samples are accessible. Full data and media records for both studies are located in our database where higher quality images, field notes, and section diagrams may exist. Georeferences permit mapping in current and deep time plate configurations. Several aspects emerged during this study. The first, ensure adequate and consistent details are registered with SESAR. Second, educate and encourage the researcher to obtain IGSNs. Third, publish the archive numbers, assigned prior to publication, alongside the IGSN. This provides access to further data through an Integrated Publishing Toolkit (IPT)/aggregators/or online repository databases, thus placing the initial sample in a much richer context for future studies. Fourth, encourage software developers to customize community software to extract data from a database and use it to register samples in bulk. This would improve workflow and provide a path for registration of large legacy collections.

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.

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....

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

Appraising the quality of sub-Saharan African cancer registration systems that contributed to GLOBOCAN 2008: a review of the literature and critical appraisal.

Science.gov (United States)

Crocker-Buque, Tim; Pollock, Allyson M

2015-02-01

To critically appraise the quality of sub-Saharan African cancer registration systems that submitted data to GLOBOCAN 2008 with respect to population coverage using publicly available information and to show the use of GLOBOCAN statistics in determining global health priorities. Sources of cancer registration data for twenty-six sub-Saharan African cancer registries were identified from GLOBOCAN 2008 factsheets. Additional information was extracted from International Agency for Research on Cancer publications. A literature search was conducted to identify studies that reported additional information on data collection methods and provided 27 studies. The websites of the 10 largest funders of development assistance for health were searched for GLOBOCAN citations. Twenty-six sub-Saharan African cancer registration systems submitting data to GLOBOCAN 2008 in relation to 21 countries. Information on 15 quality variables were extracted and compared with the international gold standard for cancer registration systems. Population coverage of the cancer registries ranged from from 2.3% of the population in Kenya to 100% in The Gambia, with a heavy urban bias in all countries. However, 20 countries (300 million people) had no cancer registration systems. Nineteen of the 26 registries failed to meet more than five of the 15 quality criteria and only one country met more than 10. Seven of the 10 largest funders of development assistance for health cite GLOBOCAN statistics in support of policy priorities. GLOBOCAN 2008 estimates are based on data drawn from poor quality cancer registration systems, with limited or no population registry coverage. It is essential the GLOBOCAN 2012 estimates should provide information on the quality of the data collection and explain the limitations of the estimates. Development organisations and the World Health Organization need to take a more cautious approach when using these data to determine priorities and allocating resources. © The

Registration in the Danish Regional Nonmelanoma Skin Cancer Dermatology Database: completeness of registration and accuracy of key variables

Directory of Open Access Journals (Sweden)

Anna L Lamberg

2010-05-01

Full Text Available Anna L Lamberg1, Deirdre Cronin-Fenton2, Anne B Olesen11Department of Dermatology, 2Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, C, DenmarkObjective: To validate a clinical database for nonmelanoma skin cancer (NMSC with the aim of monitoring and predicting the prognosis of NMSC treated by dermatologists in clinics in the central and north Denmark regions.Methods: We assessed the completeness of registration of patients and follow-up visits, and positive predictive value (PPV, negative predictive value (NPV, sensitivity, and specificity of registrations in the database. We used the Danish Pathology Registry (DPR (n = 288 and a review of randomly selected medical records (n = 67 from two clinics as gold standards.Results: The completeness of registration of patients was 62% and 76% with DPR and medical record review as gold standards, respectively. The completeness of registration of 1st and 2nd follow up visits was 85% and 69%, respectively. The PPV and NPV ranged from 85% to 99%, and the sensitivity and specificity from 67% to 100%.Conclusion: Overall, the accuracy of variables registered in the NMSC database was satisfactory but completeness of patient registration and follow-up visits were modest. The NMSC database is a potentially valuable tool for monitoring and facilitating improvement of NMSC treatment in dermatology clinics. However, there is still room for improvement of registration of both patients and their follow-up visits.Keywords: nonmelanoma skin cancer, validation, database, positive predictive value, completeness

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.

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...

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

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.

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.

Published intimate partner violence studies often differ from their trial registration records.

Science.gov (United States)

Madden, Kim; Tai, Kerry; Ali, Zak; Schneider, Patricia; Singh, Mahip; Ghert, Michelle; Bhandari, Mohit

2017-12-27

Registering study protocols in a trial registry is important for methodologic transparency and reducing selective reporting bias. The objective of this investigation was to determine whether published studies of intimate partner violence (IPV) that had been registered matched the registration record on key study design elements. We systematically searched three trial registries to identify registered IPV studies and the published literature for the associated publication. Two authors independently determined for each study whether key study elements in the registry matched those in the published paper. We included 66 studies published between 2006 and 2017. Nearly half (29/66, 44%) were registered after study completion. Many (26/66, 39%) had discrepancies regarding the primary outcome, and nearly two-thirds (42/66, 64%) had discrepancies in secondary outcomes. Discrepancies in study design were less frequent (13/66, 20%). However, large changes in sample size (26/66, 39%) and discrepancies in funding source (28/66, 42%) were frequently observed. Trial registries are important tools for research transparency and identifying and preventing outcome switching and selective outcome reporting bias. Published IPV studies often differ from their records in trial registries. Researchers should pay close attention to the accuracy of trial registry records.

The Cardiology Audit and Registration Data Standards (CARDS), European data standards for clinical cardiology practice

NARCIS (Netherlands)

M.R. Flynn (Rachel); C. Barrett (Conor); F.G. Cosio (Francisco); A.K. Gitt (Anselm); L.C. Wallentin (Lars); P. Kearney (Peter); M. Lonergan (Moira); E. Shelley (Emer); M.L. Simoons (Maarten)

2005-01-01

textabstractAIMS: Systematic registration of data from clinical practice is important for clinical care, local, national and international registries, and audit. Data to be collected for these different purposes should be harmonized. Therefore, during Ireland's Presidency of the European Union (EU)

Construction of ethics in clinical research: clinical trials registration

Directory of Open Access Journals (Sweden)

C. A. Caramori

2007-01-01

Full Text Available Scientific development that has been achieved through decades finds in clinical research a great possibility of translating findings to human health application. Evidence given by clinical trials allows everyone to have access to the best health services. However, the millionaire world of pharmaceutical industries has stained clinical research with doubt and improbability. Study results (fruits of controlled clinical trials and scientific publications (selective, manipulated and with wrong conclusions led to an inappropriate clinical practice, favoring the involved economic aspect. In 2005, the International Committee of Medical Journal Editors (ICMJE, supported by the World Association of Medical Editors, started demanding as a requisite for publication that all clinical trials be registered at the database ClinicalTrials.gov. In 2006, the World Health Organization (WHO created the International Clinical Trial Registry Platform (ICTRP, which gathers several registry centers from all over the world, and required that all researchers and pharmaceutical industries register clinical trials. Such obligatory registration has progressed and will extend to all scientific journals indexed in all worldwide databases. Registration of clinical trials means another step of clinical research towards transparency, ethics and impartiality, resulting in real evidence to the forthcoming changes in clinical practice as well as in the health situation.

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

Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya.

Science.gov (United States)

Korir, Anne; Mauti, Nathan; Moats, Pamela; Gurka, Matthew J; Mutuma, Geoffrey; Metheny, Christine; Mwamba, Peter M; Oyiro, Peter O; Fisher, Melanie; Ayers, Leona W; Rochford, Rosemary; Mwanda, Walter O; Remick, Scot C

2014-01-01

Sub-Saharan Africa cancer registries are beset by an increasing cancer burden further exacerbated by the AIDS epidemic where there are limited capabilities for cancer-AIDS match co-registration. We undertook a pilot study based on a "strength-of-evidence" approach using clinical data that is abstracted at the time of cancer registration for purposes of linking cancer diagnosis to AIDS diagnosis. The standard Nairobi Cancer Registry form was modified for registrars to abstract the following clinical data from medical records regarding HIV infection/AIDS in a hierarchal approach at time of cancer registration from highest-to-lowest strength-of-evidence: 1) documentation of positive HIV serology; 2) antiretroviral drug prescription; 3) CD4+ lymphocyte count; and 4) WHO HIV clinical stage or immune suppression syndrome (ISS), which is Kenyan terminology for AIDS. Between August 1 and October 31, 2011 a total of 1,200 cancer cases were registered. Of these, 171 cases (14.3%) met clinical strength-of-evidence criteria for association with HIV infection/AIDS; 69% (118 cases were tumor types with known HIV association - Kaposi's sarcoma, cervical cancer, non-Hodgkin's and Hodgkin's lymphoma, and conjunctiva carcinoma) and 31% (53) were consistent with non-AIDS defining cancers. Verifiable positive HIV serology was identified in 47 (27%) cases for an absolute seroprevalence rate of 4% among the cancer registered cases with an upper boundary of 14% among those meeting at least one of strength-of-evidence criteria. This pilot demonstration of a hierarchal, clinical strength-of-evidence approach for cancer-AIDS registration in Kenya establishes feasibility, is readily adaptable, pragmatic, and does not require additional resources for critically under staffed cancer registries. Cancer is an emerging public health challenge, and African nations need to develop well designed population-based studies in order to better define the impact and spectrum of malignant disease in the

Short-Term Impacts of Formalization Assistance and a Bank Information Session on Business Registration and Access to Finance in Malawi

OpenAIRE

Campos, Francisco; Goldstein, Markus; McKenzie, David

2015-01-01

Despite regulatory efforts designed to make it easier for firms to formalize, informality remains extremely high among firms in Sub-Saharan Africa. In most of the region, business registration in a national registry is separate from tax registration. This paper provides initial results from an experiment in Malawi that randomly allocated firms into a control group and three treatment groups: a) a ...

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.

Breast Cancer Challenges and Screening in China: Lessons From Current Registry Data and Population Screening Studies.

Science.gov (United States)

Song, Qing-Kun; Wang, Xiao-Li; Zhou, Xin-Na; Yang, Hua-Bing; Li, Yu-Chen; Wu, Jiang-Ping; Ren, Jun; Lyerly, Herbert Kim

2015-07-01

As one of its responses to the increasing global burden of breast cancer (BC), China has deployed a national registration and BC screening campaign. The present report describes these programs and the initial results of these national BC control strategies, highlighting the challenges to be considered. The primary BC incidence and prevalence data were obtained from the Chinese National Central Cancer Registry. MapInfo software was used to map the geographic distribution and variation. The time trends were estimated by the annual percentage of change from 2003 to 2009. The description of the screening plans and preliminary results were provided by the Ministry of Health. Chinese cancer registries were primarily developed and activated in the East and Coastal regions of China, with only 12.5% of the registries located in West China. Geographic variation was noted, with the incidence of BC higher in North China than in South China and in urban areas compared with rural areas. Of great interest, these registries reported that the overall BC incidence has been increasing in China, with an earlier age of onset compared with Western countries and a peak incidence rate at age 50. In response to this increasing incidence and early age of onset, BC screening programs assessed 1.46 million women aged 35-59 years, using clinical breast examinations and ultrasound as primary screening tools between 2009 and 2011. The diagnostic rate for this screening program was only 48.0/10(5) with 440 cases of early stage BC. Early stage BC was detected in nearly 70% of screened patients. Subsequently, a second-generation screening program was conducted that included older women aged 35-64 years and an additional 6 million women were screened. The cancer registration system in China has been uneven, with a greater focus on East rather than West China. The data from these registries demonstrate regional variation, an increasing BC incidence, and an early age of onset. The 2009 to 2011 BC

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.

Registration of civil status: formal link between family and succession intestate

Directory of Open Access Journals (Sweden)

Malena Proenza-Reyes

2017-01-01

Full Text Available The work presented to assess the main issues of the registration procedure in the field of civil status to inheritance effects, regard certificates issued by the Civil Registry official proof of family status as the main requirement to have place intestate succession; advertising of the facts and acts which constitute the formal link between this family and inheritance law on registration insufficient treatment, generates the violation of subjective rights that can be a starter. Supported the present methods of social research and analysis-synthesis and analysis of content, make important results in the national context from the characteristics presented Cuban society today and especially the Registers of Civil Status in the country.

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.

Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya.

Directory of Open Access Journals (Sweden)

Anne Korir

Full Text Available Sub-Saharan Africa cancer registries are beset by an increasing cancer burden further exacerbated by the AIDS epidemic where there are limited capabilities for cancer-AIDS match co-registration. We undertook a pilot study based on a "strength-of-evidence" approach using clinical data that is abstracted at the time of cancer registration for purposes of linking cancer diagnosis to AIDS diagnosis.The standard Nairobi Cancer Registry form was modified for registrars to abstract the following clinical data from medical records regarding HIV infection/AIDS in a hierarchal approach at time of cancer registration from highest-to-lowest strength-of-evidence: 1 documentation of positive HIV serology; 2 antiretroviral drug prescription; 3 CD4+ lymphocyte count; and 4 WHO HIV clinical stage or immune suppression syndrome (ISS, which is Kenyan terminology for AIDS. Between August 1 and October 31, 2011 a total of 1,200 cancer cases were registered. Of these, 171 cases (14.3% met clinical strength-of-evidence criteria for association with HIV infection/AIDS; 69% (118 cases were tumor types with known HIV association - Kaposi's sarcoma, cervical cancer, non-Hodgkin's and Hodgkin's lymphoma, and conjunctiva carcinoma and 31% (53 were consistent with non-AIDS defining cancers. Verifiable positive HIV serology was identified in 47 (27% cases for an absolute seroprevalence rate of 4% among the cancer registered cases with an upper boundary of 14% among those meeting at least one of strength-of-evidence criteria.This pilot demonstration of a hierarchal, clinical strength-of-evidence approach for cancer-AIDS registration in Kenya establishes feasibility, is readily adaptable, pragmatic, and does not require additional resources for critically under staffed cancer registries. Cancer is an emerging public health challenge, and African nations need to develop well designed population-based studies in order to better define the impact and spectrum of malignant disease

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.

Cancer Incidence in Five Continents: Inclusion criteria, highlights from Volume X and the global status of cancer registration.

Science.gov (United States)

Bray, F; Ferlay, J; Laversanne, M; Brewster, D H; Gombe Mbalawa, C; Kohler, B; Piñeros, M; Steliarova-Foucher, E; Swaminathan, R; Antoni, S; Soerjomataram, I; Forman, D

2015-11-01

Cancer Incidence in Five Continents (CI5), a longstanding collaboration between the International Agency for Research on Cancer and the International Association of Cancer Registries, serves as a unique source of cancer incidence data from high-quality population-based cancer registries around the world. The recent publication of Volume X comprises cancer incidence data from 290 registries covering 424 populations in 68 countries for the registration period 2003-2007. In this article, we assess the status of population-based cancer registries worldwide, describe the techniques used in CI5 to evaluate their quality and highlight the notable variation in the incidence rates of selected cancers contained within Volume X of CI5. We also discuss the Global Initiative for Cancer Registry Development as an international partnership that aims to reduce the disparities in availability of cancer incidence data for cancer control action, particularly in economically transitioning countries, already experiencing a rapid rise in the number of cancer patients annually. © 2015 UICC.

Qualitative Improvement Methods Through Analysis of Inquiry Contents for Cancer Registration

Science.gov (United States)

Boo, Yoo-Kyung; Lim, Hyun-Sook; Kim, Jung-Eun; Kim, Kyoung-Beom; Won, Young-Joo

2017-06-25

Background: In Korea, the national cancer database was constructed after the initiation of the national cancer registration project in 1980, and the annual national cancer registration report has been published every year since 2005. Consequently, data management must begin even at the stage of data collection in order to ensure quality. Objectives: To determine the suitability of cancer registries’ inquiry tools through the inquiry analysis of the Korea Central Cancer Registry (KCCR), and identify the needs to improve the quality of cancer registration. Methods: Results of 721 inquiries to the KCCR from 2000 to 2014 were analyzed by inquiry year, question type, and medical institution characteristics. Using Stata version 14.1, descriptive analysis was performed to identify general participant characteristics, and chi-square analysis was applied to investigate significant differences in distribution characteristics by factors affecting the quality of cancer registration data. Results: The number of inquiries increased in 2005–2009. During this period, there were various changes, including the addition of cancer registration items such as brain tumors and guideline updates. Of the inquirers, 65.3% worked at hospitals in metropolitan cities and 60.89% of hospitals had 601–1000 beds. Tertiary hospitals had the highest number of inquiries (64.91%), and the highest number of questions by type were 353 (48.96%) for histological codes, 92 (12.76%) for primary sites, and 76 (10.54%) for reportable. Conclusions: A cancer registration inquiry system is an effective method when not confident about codes during cancer registration, or when confronting cancer cases in which previous clinical knowledge or information on the cancer registration guidelines are insufficient. Creative Commons Attribution License

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

Quality of registration for clinical trials published in emergency medicine journals.

Science.gov (United States)

Jones, Christopher W; Platts-Mills, Timothy F

2012-10-01

In 2005, the International Committee of Medical Journal Editors established clinical trial registration as a requirement for articles submitted to member journals, with the goal of improving the transparency of clinical research. The objective of this study is to characterize the registration of clinical trials published in emergency medicine journals. Randomized trials involving human subjects and published between June 1, 2008, and May 31, 2011 in the 5 emergency medicine journals with the highest impact factors were included. We assessed the clarity of registered primary outcomes, timing of registration relative to patient enrollment, and consistency between registered and published outcomes. Of the 123 trials included, registry entries were identified for 57 (46%). Of the 57 registered studies, 45 (79%) were registered after the initiation of subject enrollment, 9 (16%) had registered outcomes that were unclear, and 26 (46%) had discrepancies between registered and published outcomes. Only 5 studies were registered before patient enrollment with a clear primary outcome that was consistent with the published primary outcome. Annals of Emergency Medicine was the only journal in which the majority of trials were registered. Current compliance with clinical trial registration guidelines is poor among trials published in emergency medicine journals. Copyright © 2012. Published by Mosby, Inc.

Common data items in seven European oesophagogastric cancer surgery registries: towards a European upper GI cancer audit (EURECCA Upper GI).

Science.gov (United States)

de Steur, W O; Henneman, D; Allum, W H; Dikken, J L; van Sandick, J W; Reynolds, J; Mariette, C; Jensen, L; Johansson, J; Kolodziejczyk, P; Hardwick, R H; van de Velde, C J H

2014-03-01

Seven countries (Denmark, France, Ireland, the Netherlands, Poland, Sweden, United Kingdom) collaborated to initiate a EURECCA (European Registration of Cancer Care) Upper GI project. The aim of this study was to identify a core dataset of shared items in the different data registries which can be used for future collaboration between countries. Item lists from all participating Upper GI cancer registries were collected. Items were scored 'present' when included in the registry, or when the items could be deducted from other items in the registry. The definition of a common item was that it was present in at least six of the seven participating countries. The number of registered items varied between 40 (Poland) and 650 (Ireland). Among the 46 shared items were data on patient characteristics, staging and diagnostics, neoadjuvant treatment, surgery, postoperative course, pathology, and adjuvant treatment. Information on non-surgical treatment was available in only 4 registries. A list of 46 shared items from seven participating Upper GI cancer registries was created, providing a basis for future quality assurance and research in Upper GI cancer treatment on a European level. Copyright © 2013 Elsevier Ltd. All rights reserved.

EL CONTROL DE LA ACTIVIDAD REGISTRAL COOPERATIVA: ESTUDIO CRÍTICO SOBRE SUS DIFICULTADES E INCÓGNITAS/THE CONTROL OF THE REGISTRAL ACTIVITY ON CO-OPERATIVES: A CRITICAL STUDY OF ITS DIFFICULTIES AND ENIGMAS

Directory of Open Access Journals (Sweden)

María BURZACO SAMPER

2009-09-01

Full Text Available La configuración de los Registros de Cooperativas como instrumentos de carácter administrativo con eficacia jurídica encierra una serie de dificultades de indudable trascendencia práctica entre los que destaca el control de la actividad registral. En este sentido, la multiplicidad normativa característica del actual escenario jurídico cooperativo propicia la existencia de soluciones divergentes que, al margen de los problemas que plantean sobre un eventual exceso competencial, pueden tener incidencia tanto en la seguridad jurídica como en el tipo y alcance de la fiscalización judicial. Por otro lado, la naturaleza híbrida de los Registros de Cooperativas provoca distorsiones cuya salida no siempre es clara, en cuanto las previsiones legales y reglamentarias chocan con ciertas limitaciones de la normativa administrativa general aplicable: así ocurre singularmente con el principio registral de legitimación en relación con aquellos mecanismos de control en vía administrativa cuya puesta en marcha corresponde de oficio a la propia Administración Pública./The configuration of the Registries of Cooperatives as administrative instruments withlegal effect, raises a series of difficulties of doubtless practical importance. Out of them, wecan underline one: the control behind the registration activity.In this sense, the multiplying number of norms that shape current legal cooperativescene, may involve many divergent resolutions that, on top of the issues caused behind apotential excess of competence, may also has consequences on both the legal security as wellas on the nature and reach of the judicial control.On the other hand, the hybrid character of the Registries of Cooperatives may needsome adjustments whose solution is not always clear, due to the legal and legitimateassessments mismatching some restrictions of the applicable general administrative norm.This can be illustrated behind the registry principle of legitimacy, related to

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...

The IGSN Experience: Successes and Challenges of Implementing Persistent Identifiers for Samples

Science.gov (United States)

Lehnert, Kerstin; Arko, Robert

2016-04-01

Physical samples collected and studied in the Earth sciences represent both a research resource and a research product in the Earth Sciences. As such they need to be properly managed, curated, documented, and cited to ensure re-usability and utility for future science, reproducibility of the data generated by their study, and credit for funding agencies and researchers who invested substantial resources and intellectual effort into their collection and curation. Use of persistent and unique identifiers and deposition of metadata in a persistent registry are therefore as important for physical samples as they are for digital data. The International Geo Sample Number (IGSN) is a persistent, globally unique identifier. Its adoption by individual investigators, repository curators, publishers, and data managers is rapidly growing world-wide. This presentation will provide an analysis of the development and implementation path of the IGSN and relevant insights and experiences gained along its way. Development of the IGSN started in 2004 as part of a US NSF-funded project to establish a registry for sample metadata, the System for Earth Sample Registration (SESAR). The initial system provided a centralized solution for users to submit information about their samples and obtain IGSNs and bar codes. Challenges encountered during this initial phase related to defining the scope of the registry, granularity of registered objects, responsibilities of relevant actors, and workflows, and designing the registry's metadata schema, its user interfaces, and the identifier itself, including its syntax. The most challenging task though was to make the IGSN an integral part of personal and institutional sample management, digital management of sample-based data, and data publication on a global scale. Besides convincing individual researchers, curators, editors and publishers, as well as data managers in US and non-US academia, state and federal agencies, the PIs of the SESAR project

United States Transuranium Registry. Annual report, October 1, 1983-September 30, 1984

International Nuclear Information System (INIS)

Swint, M.J.; Kathren, R.L.

1985-04-01

This report provides an overview of the objectives, program, facilities and FY-84 accomplishments of the United States Transuranium Registry. Specific activities summarized include postmortem radiochemical analysis of two whole bodies, one with a significant deposition of 241 Am and the other with a deposition of 239 Pu. Results of a followup of early Manhattan District workers as potential registrants, a possible relationship between actinide concentration in bone and ash content, and interlaboratory cooperative activities are briefly discussed along with the initiation of studies of actinides in bone marrow and hair

Maternal mortality in rural south Ethiopia: outcomes of community-based birth registration by health extension workers.

Directory of Open Access Journals (Sweden)

Yaliso Yaya

Full Text Available Rural communities in low-income countries lack vital registrations to track birth outcomes. We aimed to examine the feasibility of community-based birth registration and measure maternal mortality ratio (MMR in rural south Ethiopia.In 2010, health extension workers (HEWs registered births and maternal deaths among 421,639 people in three districts (Derashe, Bonke, and Arba Minch Zuria. One nurse-supervisor per district provided administrative and technical support to HEWs. The primary outcomes were the feasibility of registration of a high proportion of births and measuring MMR. The secondary outcome was the proportion of skilled birth attendance. We validated the completeness of the registry and the MMR by conducting a house-to-house survey in 15 randomly selected villages in Bonke.We registered 10,987 births (81·4% of expected 13,492 births with annual crude birth rate of 32 per 1,000 population. The validation study showed that, of 2,401 births occurred in the surveyed households within eight months of the initiation of the registry, 71·6% (1,718 were registered with similar MMRs (474 vs. 439 between the registered and unregistered births. Overall, we recorded 53 maternal deaths; MMR was 489 per 100,000 live births and 83% (44 of 53 maternal deaths occurred at home. Ninety percent (9,863 births were at home, 4% (430 at health posts, 2·5% (282 at health centres, and 3·5% (412 in hospitals. MMR increased if: the male partners were illiterate (609 vs. 346; p= 0·051 and the villages had no road access (946 vs. 410; p= 0·039. The validation helped to increase the registration coverage by 10% through feedback discussions.It is possible to obtain a high-coverage birth registration and measure MMR in rural communities where a functional system of community health workers exists. The MMR was high in rural south Ethiopia and most births and maternal deaths occurred at home.

Maternal Mortality in Rural South Ethiopia: Outcomes of Community-Based Birth Registration by Health Extension Workers

Science.gov (United States)

Yaya, Yaliso; Data, Tadesse; Lindtjørn, Bernt

2015-01-01

Introduction Rural communities in low-income countries lack vital registrations to track birth outcomes. We aimed to examine the feasibility of community-based birth registration and measure maternal mortality ratio (MMR) in rural south Ethiopia. Methods In 2010, health extension workers (HEWs) registered births and maternal deaths among 421,639 people in three districts (Derashe, Bonke, and Arba Minch Zuria). One nurse-supervisor per district provided administrative and technical support to HEWs. The primary outcomes were the feasibility of registration of a high proportion of births and measuring MMR. The secondary outcome was the proportion of skilled birth attendance. We validated the completeness of the registry and the MMR by conducting a house-to-house survey in 15 randomly selected villages in Bonke. Results We registered 10,987 births (81·4% of expected 13,492 births) with annual crude birth rate of 32 per 1,000 population. The validation study showed that, of 2,401 births occurred in the surveyed households within eight months of the initiation of the registry, 71·6% (1,718) were registered with similar MMRs (474 vs. 439) between the registered and unregistered births. Overall, we recorded 53 maternal deaths; MMR was 489 per 100,000 live births and 83% (44 of 53 maternal deaths) occurred at home. Ninety percent (9,863 births) were at home, 4% (430) at health posts, 2·5% (282) at health centres, and 3·5% (412) in hospitals. MMR increased if: the male partners were illiterate (609 vs. 346; p= 0·051) and the villages had no road access (946 vs. 410; p= 0·039). The validation helped to increase the registration coverage by 10% through feedback discussions. Conclusion It is possible to obtain a high-coverage birth registration and measure MMR in rural communities where a functional system of community health workers exists. The MMR was high in rural south Ethiopia and most births and maternal deaths occurred at home. PMID:25799229

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.

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

Science.gov (United States)

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

2015-05-01

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

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

Validation of spontaneous abortion diagnoses in the Danish National Registry of Patients

DEFF Research Database (Denmark)

Lohse, Sarah Rytter; Farkas, Dóra Körmendiné; Lohse, Nicolai

2010-01-01

PURPOSE: The purpose of this study is to validate the diagnosis of spontaneous abortion (SA) recorded in the Danish National Registry of Patients (DNRP). METHODS: We randomly selected patients registered in the DNRP with a diagnosis of SA between 1980 and 2008 from hospitals in the county of North...... the three patients with available data who did not fulfill the criteria for SA, one had an induced abortion and two had threatened abortion but did not miscarry. CONCLUSION: Registration of SA in the DNRP accurately reflects the diagnoses recorded in medical charts. The DNRP is a suitable source of data...

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.

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.

My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource.

Science.gov (United States)

Fisher, Joan K; Bromley, Russell L; Mansfield, Brian C

2016-01-01

My Retina Tracker™ is a new on-line registry for people affected with inherited orphan retinal degenerative diseases, and their unaffected, genetic relatives. Created and supported by the Foundation Fighting Blindness, it is an international resource designed to capture the disease from the perspective of the registry participant and their retinal health care providers. The registry operates under an Institutional Review Board (IRB)-approved protocol and allows sharing of de-identified data with participants, researchers and clinicians. All participants sign an informed consent that includes selecting which data they wish to share. There is no minimum age of participation. Guardians must sign on behalf of minors, and children between the ages of 12 to 17 also sign an informed assent. Participants may compare their disease to others in the registry using graphical interpretations of the aggregate registry data. Researchers and clinicians have two levels of access. The first provides an interface to interrogate all data fields registrants have agreed to share based on their answers in the IRB informed consent. The second provides a route to contact people in the registry who may be eligible for studies or trials, through the Foundation.

Central nervous system tumours among adolescents and young adults (15-39 years) in Southern and Eastern Europe: Registration improvements reveal higher incidence rates compared to the US.

Science.gov (United States)

Georgakis, Marios K; Panagopoulou, Paraskevi; Papathoma, Paraskevi; Tragiannidis, Athanasios; Ryzhov, Anton; Zivkovic-Perisic, Snezana; Eser, Sultan; Taraszkiewicz, Łukasz; Sekerija, Mario; Žagar, Tina; Antunes, Luis; Zborovskaya, Anna; Bastos, Joana; Florea, Margareta; Coza, Daniela; Demetriou, Anna; Agius, Domenic; Strahinja, Rajko M; Sfakianos, Georgios; Nikas, Ioannis; Kosmidis, Sofia; Razis, Evangelia; Pourtsidis, Apostolos; Kantzanou, Maria; Dessypris, Nick; Petridou, Eleni Th

2017-11-01

To present incidence of central nervous system (CNS) tumours among adolescents and young adults (AYAs; 15-39 years) derived from registries of Southern and Eastern Europe (SEE) in comparison to the Surveillance, Epidemiology and End Results (SEER), US and explore changes due to etiological parameters or registration improvement via evaluating time trends. Diagnoses of 11,438 incident malignant CNS tumours in AYAs (1990-2014) were retrieved from 14 collaborating SEE cancer registries and 13,573 from the publicly available SEER database (1990-2012). Age-adjusted incidence rates (AIRs) were calculated; Poisson and joinpoint regression analyses were performed for temporal trends. The overall AIR of malignant CNS tumours among AYAs was higher in SEE (28.1/million) compared to SEER (24.7/million). Astrocytomas comprised almost half of the cases in both regions, albeit the higher proportion of unspecified cases in SEE registries (30% versus 2.5% in SEER). Similar were the age and gender distributions across SEE and SEER with a male-to-female ratio of 1.3 and an overall increase of incidence by age. Increasing temporal trends in incidence were documented in four SEE registries (Greater Poland, Portugal North, Turkey-Izmir and Ukraine) versus an annual decrease in Croatia (-2.5%) and a rather stable rate in SEER (-0.3%). This first report on descriptive epidemiology of AYAs malignant CNS tumours in the SEE area shows higher incidence rates as compared to the United States of America and variable temporal trends that may be linked to registration improvements. Hence, it emphasises the need for optimisation of cancer registration processes, as to enable the in-depth evaluation of the observed patterns by disease subtype. Copyright © 2017 Elsevier Ltd. All rights reserved.

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...

Do emergency medicine journals promote trial registration and adherence to reporting guidelines? A survey of "Instructions for Authors".

Science.gov (United States)

Sims, Matthew T; Henning, Nolan M; Wayant, C Cole; Vassar, Matt

2016-11-24

The aim of this study was to evaluate the current state of two publication practices, reporting guidelines requirements and clinical trial registration requirements, by analyzing the "Instructions for Authors" of emergency medicine journals. We performed a web-based data abstraction from the "Instructions for Authors" of the 27 Emergency Medicine journals catalogued in the Expanded Science Citation Index of the 2014 Journal Citation Reports and Google Scholar Metrics h5-index to identify whether each journal required, recommended, or made no mention of the following reporting guidelines: EQUATOR Network, ICMJE, ARRIVE, CARE, CONSORT, STARD, TRIPOD, CHEERS, MOOSE, STROBE, COREQ, SRQR, SQUIRE, PRISMA-P, SPIRIT, PRISMA, and QUOROM. We also extracted whether journals required or recommended trial registration. Authors were blinded to one another's ratings until completion of the data validation. Cross-tabulations and descriptive statistics were calculated using IBM SPSS 22. Of the 27 emergency medicine journals, 11 (11/27, 40.7%) did not mention a single guideline within their "Instructions for Authors," while the remaining 16 (16/27, 59.3%) mentioned one or more guidelines. The QUOROM statement and SRQR were not mentioned by any journals whereas the ICMJE guidelines (18/27, 66.7%) and CONSORT statement (15/27, 55.6%) were mentioned most often. Of the 27 emergency medicine journals, 15 (15/27, 55.6%) did not mention trial or review registration, while the remaining 12 (12/27, 44.4%) at least mentioned one of the two. Trial registration through ClinicalTrials.gov was mentioned by seven (7/27, 25.9%) journals while the WHO registry was mentioned by four (4/27, 14.8%). Twelve (12/27, 44.4%) journals mentioned trial registration through any registry platform. The aim of this study was to evaluate the current state of two publication practices, reporting guidelines requirements and clinical trial registration requirements, by analyzing the "Instructions for Authors" of

Data from a national lung cancer registry contributes to improve outcome and quality of surgery: Danish results

DEFF Research Database (Denmark)

Jakobsen, Erik; Palshof, Torben; Østerlind, Kell

2008-01-01

OBJECTIVE: In 1998 The Danish Lung Cancer Group published the first edition of guidelines for diagnosis and treatment of lung cancer. A national registry was implemented in the year 2000 with the primary objective to monitor the implementation of these guidelines and nationwide to secure and impr......OBJECTIVE: In 1998 The Danish Lung Cancer Group published the first edition of guidelines for diagnosis and treatment of lung cancer. A national registry was implemented in the year 2000 with the primary objective to monitor the implementation of these guidelines and nationwide to secure...... has decreased from 23% to 11%. The proportion of patients having surgery within 14 days from referral has increased from 69% to 87%. CONCLUSIONS: Establishment of a national lung cancer group with the primary tasks to implement updated national guidelines and to secure valid registration of clinical...

The United States transuranium and uranium registries (USTUR). Learning from plutonium and uranium workers

International Nuclear Information System (INIS)

James, A.C.; Brooks, B.G.

2007-01-01

Beginning in the 1960's with the mission of acquiring and providing precise information about the effects of plutonium and other transuranic elements in man, the USTUR has followed up to 'old age' almost 500 volunteer Registrants who worked at weapons sites and received measurable internal doses. While failing (despite careful life-time follow-up) to demonstrate deleterious health effects attributable to transuranic elements, USTUR research, based on these real human data from DOE workers, continues its contributions to the development of the biokinetic models used internationally to assess intakes from bioassay data and predict tissue doses. There is still much to learn from the Registries '370 deceased tissue donors and the 110 still-living Registrants, whose average age is now about 76 years (youngest 95 y). This paper illustrates USTUR's current 5-y research program, including the application of registrant case data to (i) quantify the variability in behavior of transuranic materials among individuals; (ii) validate new methodologies used at DOE sites for assessing 'realistic' tissue doses in individual cases; and (iii) model the effectiveness of chelation therapy. These data can also be used to examine the adequacy of protection standards utilized for plutonium workers in the early years of the nuclear industry. (author)

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.

Antenatal Care Provider and Cesarean Section in Urban Areas in Indonesia

Directory of Open Access Journals (Sweden)

Terry Yuliana Rahadian Pristya

2018-02-01

kehamilannya di bidan setelah dikontrol usia ibu, tempat periksa kehamilan, paritas, dan tempat melahirkan. Terdapat interaksi antara spesialis kandungan dengan status sosial ekonomi untuk persalinan sesar. Implementasi peraturan dilakukannya persalinan sesar oleh institusi kesehatan, serta melakukan upaya protektif dan preventif persalinan pada kelompok masyarakat ekonomi tinggi dapat mengurangi terjadinya persalinan sesar yang tidak perlu.

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.

ReGaTE: Registration of Galaxy Tools in Elixir.

Science.gov (United States)

Doppelt-Azeroual, Olivia; Mareuil, Fabien; Deveaud, Eric; Kalaš, Matúš; Soranzo, Nicola; van den Beek, Marius; Grüning, Björn; Ison, Jon; Ménager, Hervé

2017-06-01

Bioinformaticians routinely use multiple software tools and data sources in their day-to-day work and have been guided in their choices by a number of cataloguing initiatives. The ELIXIR Tools and Data Services Registry (bio.tools) aims to provide a central information point, independent of any specific scientific scope within bioinformatics or technological implementation. Meanwhile, efforts to integrate bioinformatics software in workbench and workflow environments have accelerated to enable the design, automation, and reproducibility of bioinformatics experiments. One such popular environment is the Galaxy framework, with currently more than 80 publicly available Galaxy servers around the world. In the context of a generic registry for bioinformatics software, such as bio.tools, Galaxy instances constitute a major source of valuable content. Yet there has been, to date, no convenient mechanism to register such services en masse. We present ReGaTE (Registration of Galaxy Tools in Elixir), a software utility that automates the process of registering the services available in a Galaxy instance. This utility uses the BioBlend application program interface to extract service metadata from a Galaxy server, enhance the metadata with the scientific information required by bio.tools, and push it to the registry. ReGaTE provides a fast and convenient way to publish Galaxy services in bio.tools. By doing so, service providers may increase the visibility of their services while enriching the software discovery function that bio.tools provides for its users. The source code of ReGaTE is freely available on Github at https://github.com/C3BI-pasteur-fr/ReGaTE . © The Author 2017. Published by Oxford University Press.

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.

Clinical Trials in Dentistry: A Cross-sectional Analysis of World Health Organization-International Clinical Trial Registry Platform.

Science.gov (United States)

Sivaramakrishnan, Gowri; Sridharan, Kannan

2016-06-01

Clinical trials are the back bone for evidence-based practice (EBP) and recently EBP has been considered the best source of treatment strategies available. Clinical trial registries serve as databases of clinical trials. As regards to dentistry in specific data on the number of clinical trials and their quality is lacking. Hence, the present study was envisaged. Clinical trials registered in WHO-ICTRP (http://apps.who.int/trialsearch/AdvSearch.aspx) in dental specialties were considered. The details assessed from the collected trials include: Type of sponsors; Health condition; Recruitment status; Study design; randomization, method of randomization and allocation concealment; Single or multi-centric; Retrospective or prospective registration; and Publication status in case of completed studies. A total of 197 trials were identified. Maximum trials were from United States (n = 30) and United Kingdom (n = 38). Seventy six trials were registered in Clinical Trials.gov, 54 from International Standards of Reporting Clinical Trials, 13 each from Australia and New Zealand Trial Register and Iranian Registry of Clinical Trials, 10 from German Clinical Trial Registry, eight each from Brazilian Clinical Trial Registry and Nederland's Trial Register, seven from Japan Clinical Trial Registry, six from Clinical Trial Registry of India and two from Hong Kong Clinical Trial Registry. A total of 78.7% studies were investigator-initiated and 64% were completed while 3% were terminated. Nearly four-fifths of the registered trials (81.7%) were interventional studies of which randomized were the large majority (94.4%) with 63.2% being open label, 20.4% using single blinding technique and 16.4% were doubled blinded. The number, methodology and the characteristics of clinical trials in dentistry have been noted to be poor especially in terms of being conducted multi-centrically, employing blinding and the method for randomization and allocation concealment. More emphasis has to be

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...

Registration Service

CERN Multimedia

GS Department

2010-01-01

Following a reorganization in Building 55, please note that the Registration Service is now organised as follows :  Ground floor: access cards (76903). 1st floor : registration of external firms’ personnel (76611 / 76622); car access stickers (76633); biometric registration (79710). Opening hours: 07-30 to 16-00 non-stop. GS-SEM Group General Infrastructure Services Department

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.

Validity of the Prescriber Information in the Danish National Prescription Registry

DEFF Research Database (Denmark)

Rasmussen, Lotte; Valentin, Julie; Gesser, Katarina Margareta

2016-01-01

The aim of this study was to measure the validity of the prescriber information recorded in the Danish National Prescription Registry (DNPR). The prescriber information recorded in the pharmacies' electronic dispensing system was considered to represent the prescriber information recorded...... in the DNPR. Further, the problem of validity of the prescriber information pertains only to non-electronic prescriptions, as these are manually entered into the dispensing system. The recorded prescriber information was thus validated against information from a total of 2,000 non-electronic prescriptions...... at five Danish community pharmacies. The validity of the recorded prescriber information was measured at the level of the individual prescriber and the prescriber type, respectively. The proportion of non-electronic prescriptions with incorrect registrations was 22.4% (95% Confidence Interval (CI): 20...

21 CFR 710.6 - Notification of registrant; cosmetic product establishment registration number.

Science.gov (United States)

2010-04-01

... 21 Food and Drugs 7 2010-04-01 2010-04-01 false Notification of registrant; cosmetic product... OF HEALTH AND HUMAN SERVICES (CONTINUED) COSMETICS VOLUNTARY REGISTRATION OF COSMETIC PRODUCT ESTABLISHMENTS § 710.6 Notification of registrant; cosmetic product establishment registration number. The...

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.

16 CFR 1130.8 - Requirements for Web site registration or alternative e-mail registration.

Science.gov (United States)

2010-01-01

... registration. (a) Link to registration page. The manufacturer's Web site, or other Web site established for the... web page that goes directly to “Product Registration.” (b) Purpose statement. The registration page... registration page. The Web site registration page shall request only the consumer's name, address, telephone...

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...

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...

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.

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

Science.gov (United States)

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

2017-06-01

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

Constrained non-rigid registration for whole body image registration: method and validation

Science.gov (United States)

Li, Xia; Yankeelov, Thomas E.; Peterson, Todd E.; Gore, John C.; Dawant, Benoit M.

2007-03-01

3D intra- and inter-subject registration of image volumes is important for tasks that include measurements and quantification of temporal/longitudinal changes, atlas-based segmentation, deriving population averages, or voxel and tensor-based morphometry. A number of methods have been proposed to tackle this problem but few of them have focused on the problem of registering whole body image volumes acquired either from humans or small animals. These image volumes typically contain a large number of articulated structures, which makes registration more difficult than the registration of head images, to which the vast majority of registration algorithms have been applied. To solve this problem, we have previously proposed an approach, which initializes an intensity-based non-rigid registration algorithm with a point based registration technique [1, 2]. In this paper, we introduce new constraints into our non-rigid registration algorithm to prevent the bones from being deformed inaccurately. Results we have obtained show that the new constrained algorithm leads to better registration results than the previous one.

Mass preserving image registration

DEFF Research Database (Denmark)

Gorbunova, Vladlena; Sporring, Jon; Lo, Pechin Chien Pau

2010-01-01

The paper presents results the mass preserving image registration method in the Evaluation of Methods for Pulmonary Image Registration 2010 (EMPIRE10) Challenge. The mass preserving image registration algorithm was applied to the 20 image pairs. Registration was evaluated using four different...

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

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

21 CFR 1301.36 - Suspension or revocation of registration; suspension of registration pending final order...

Science.gov (United States)

2010-04-01

... 21 Food and Drugs 9 2010-04-01 2010-04-01 false Suspension or revocation of registration; suspension of registration pending final order; extension of registration pending final order. 1301.36... registration pending final order; extension of registration pending final order. (a) For any registration...

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.

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.

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.

21 CFR 710.8 - Misbranding by reference to registration or to registration number.

Science.gov (United States)

2010-04-01

... HUMAN SERVICES (CONTINUED) COSMETICS VOLUNTARY REGISTRATION OF COSMETIC PRODUCT ESTABLISHMENTS § 710.8 Misbranding by reference to registration or to registration number. Registration of a cosmetic product... products by the Food and Drug Administration. Any representation in labeling or advertising that creates an...

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...

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...

A Global Cancer Surveillance Framework Within Noncommunicable Disease Surveillance: Making the Case for Population-Based Cancer Registries.

Science.gov (United States)

Piñeros, Marion; Znaor, Ariana; Mery, Les; Bray, Freddie

2017-01-01

The growing burden of cancer among several major noncommunicable diseases (NCDs) requires national implementation of tailored public health surveillance. For many emerging economies where emphasis has traditionally been placed on the surveillance of communicable diseases, it is critical to understand the specificities of NCD surveillance and, within it, of cancer surveillance. We propose a general framework for cancer surveillance that permits monitoring the core components of cancer control. We examine communalities in approaches to the surveillance of other major NCDs as well as communicable diseases, illustrating key differences in the function, coverage, and reporting in each system. Although risk factor surveys and vital statistics registration are the foundation of surveillance of NCDs, population-based cancer registries play a unique fundamental role specific to cancer surveillance, providing indicators of population-based incidence and survival. With an onus now placed on governments to collect these data as part of the monitoring of NCD targets, the integration of cancer registries into existing and future NCD surveillance strategies is a vital requirement in all countries worldwide. The Global Initiative for Cancer Registry Development, endorsed by the World Health Organization, provides a means to enhance cancer surveillance capacity in low- and middle-income countries. © The Author 2017. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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

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.

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

[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.

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...

32 CFR 1615.1 - Registration.

Science.gov (United States)

2010-07-01

... registration card or other method of registration prescribed by the Director of Selective Service by a person... the records (master computer file) of the Selective Service System. Registration is completed when... Director include completing a Selective Service Registration Card at a classified Post Office, registration...

Registration performance on EUV masks using high-resolution registration metrology

Science.gov (United States)

Steinert, Steffen; Solowan, Hans-Michael; Park, Jinback; Han, Hakseung; Beyer, Dirk; Scherübl, Thomas

2016-10-01

Next-generation lithography based on EUV continues to move forward to high-volume manufacturing. Given the technical challenges and the throughput concerns a hybrid approach with 193 nm immersion lithography is expected, at least in the initial state. Due to the increasing complexity at smaller nodes a multitude of different masks, both DUV (193 nm) and EUV (13.5 nm) reticles, will then be required in the lithography process-flow. The individual registration of each mask and the resulting overlay error are of crucial importance in order to ensure proper functionality of the chips. While registration and overlay metrology on DUV masks has been the standard for decades, this has yet to be demonstrated on EUV masks. Past generations of mask registration tools were not necessarily limited in their tool stability, but in their resolution capabilities. The scope of this work is an image placement investigation of high-end EUV masks together with a registration and resolution performance qualification. For this we employ a new generation registration metrology system embedded in a production environment for full-spec EUV masks. This paper presents excellent registration performance not only on standard overlay markers but also on more sophisticated e-beam calibration patterns.

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.

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...

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.

Information from the Registration Service

CERN Multimedia

GS Department

2011-01-01

Please note that the Registration Service (Bldg 55-1st floor) will be exceptionally open during the annual end of year closure from 10:00 to 12:00 on the following days: 22, 23, 26, 27,28, 29 et 30 December 2011 and 2,3, et 4 January 2012. All the activities related to the Registration Service will be operational: registration for contractors’ personnel; registrations for professional visits; access cards; car stickers; biometric registration. The Registration Service

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

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

X-linked hypohidrotic ectodermal dysplasia (XLHED): clinical and diagnostic insights from an international patient registry.

Science.gov (United States)

Fete, Mary; Hermann, Julie; Behrens, Jeffrey; Huttner, Kenneth M

2014-10-01

The web-based Ectodermal Dysplasia International Registry (EDIR) is a comprehensive patient-reported survey contributing to an understanding of ectodermal dysplasia (ED). XLHED is the most common of the genetic ED syndromes and was the primary diagnosis reported by 223/835 respondents (141 males and 82 females). Overall, 96% of XLHED registrants reported as least one other affected family member and 21% reported a family history of infant or childhood deaths, consistent with the published mortality data in this disorder. In general, XLHED is diagnosed by the triad of decreased sweating, reduced hair, and hypodontia (present in 89%, 74%, and 74% of XLHED respondents). Additionally, the registry dataset confirmed a spectrum of life-long XLHED clinical complications including recurrent sinus infections (49% males, 52% females), nasal congestion often foul smelling and interfering with feeding (73% males, 27% females), eczema (66% males, 40% females), wheezing (66% males, 45% females), and a hoarse, raspy voice (67% males, 23% females). The Registry results also highlighted features consistently differentiating XLHED from the non-hypohidrotic ED syndromes including the frequency of infant/childhood deaths, the presence of limb/digit abnormalities, feeding issues related to nasal discharge, dentures, and a diagnosis of asthma. These results represent the largest collection of data on a broad-spectrum of health-related issues affecting ED patients. This project provides information for expanding knowledge of the natural history of XLHED, and as such may facilitate the diagnosis and treatment of its varied and lifelong medical challenges. © 2014 Wiley Periodicals, Inc.

Assessment of rigid multi-modality image registration consistency using the multiple sub-volume registration (MSR) method

International Nuclear Information System (INIS)

Ceylan, C; Heide, U A van der; Bol, G H; Lagendijk, J J W; Kotte, A N T J

2005-01-01

Registration of different imaging modalities such as CT, MRI, functional MRI (fMRI), positron (PET) and single photon (SPECT) emission tomography is used in many clinical applications. Determining the quality of any automatic registration procedure has been a challenging part because no gold standard is available to evaluate the registration. In this note we present a method, called the 'multiple sub-volume registration' (MSR) method, for assessing the consistency of a rigid registration. This is done by registering sub-images of one data set on the other data set, performing a crude non-rigid registration. By analysing the deviations (local deformations) of the sub-volume registrations from the full registration we get a measure of the consistency of the rigid registration. Registration of 15 data sets which include CT, MR and PET images for brain, head and neck, cervix, prostate and lung was performed utilizing a rigid body registration with normalized mutual information as the similarity measure. The resulting registrations were classified as good or bad by visual inspection. The resulting registrations were also classified using our MSR method. The results of our MSR method agree with the classification obtained from visual inspection for all cases (p < 0.02 based on ANOVA of the good and bad groups). The proposed method is independent of the registration algorithm and similarity measure. It can be used for multi-modality image data sets and different anatomic sites of the patient. (note)

21 CFR 1301.52 - Termination of registration; transfer of registration; distribution upon discontinuance of business.

Science.gov (United States)

2010-04-01

... discontinues business or professional practice. Any registrant who ceases legal existence or discontinues... registration; distribution upon discontinuance of business. 1301.52 Section 1301.52 Food and Drugs DRUG... of registration; transfer of registration; distribution upon discontinuance of business. (a) Except...

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.

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.

Land Right Registration and Property Development for Poverty Eradication and Slum Clearance in Nigeria

Directory of Open Access Journals (Sweden)

Olusegun Olaopin Olanrele

2014-12-01

Full Text Available The focus of this paper is to unfold the implication of non-registration of land rights on the achievement of the poverty eradication and slum clearance targets of the United Nation's Millennium development goals in Nigeria. The paper is based on empirical survey of land holding in the outskirts of Ibadan city and the rural areas in Oyo State, of Nigeria. A case study research method was adopted and data were collected with the use of questionnaire survey and secondary data was also extracted from the state land registry office in respect of total cost of documentation of subsequent transaction on titled/registered land. The study found that ignorance and government insensitivity in addition to high cost and delay are among major constraints to land titling. Only a few opportune people can afford the land right formalization process and they do so when it becomes necessary. These unequivocally militate against the achievement of the poverty and slum eradication goals of the UN. The paper suggested simplification of the titling procedure, cost reduction, computerization and public enlightenment on the benefits of registered land right to facilitate efficient land right registration towards adequate housing for the citizenry.

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...

The completeness of chest X-ray procedure codes in the Danish National Patient Registry

Directory of Open Access Journals (Sweden)

Hjertholm P

2017-03-01

Full Text Available Peter Hjertholm,1 Kaare Rud Flarup,1 Louise Mahncke Guldbrandt,1 Peter Vedsted1,2 1Research Center for Cancer Diagnosis in Primary Care, Department of Public Health, 2University Clinic for Innovative Health Care Delivery, Diagnostic Centre, Silkeborg Hospital, Department of Clinical Medicine, Aarhus University, Aarhus, Denmark Objective: The aim of this validation study was to assess the completeness of the registrations of chest X-rays (CXR in two different versions of the Danish National Patient Registry (DNPR. Material and methods: We included electronic record data on CXR performed on patients aged 40 to 99 years from nine radiology departments covering 20 Danish hospitals. From each department, we included data from three randomly selected weeks between 2004 and 2011 (reference standard. In two versions of the DNPR from the State Serum Institute (SSI and Statistics Denmark, respectively, we investigated the proportion of registered CXR compared to the reference standard. Furthermore, we compared the completeness of the recorded data according to the responsible department (main department. Results: We identified 11,235 patients and 12,513 CXR in the reference standard. The data from the SSI contained 12,265 (98% CXR, whereas the data from Statistics Denmark comprised 9,151 (73.1% CXR. The completeness of the SSI data was fairly constant across years, radiology departments, medical specialties, and age groups. The data from Statistics Denmark was almost complete in 2011 (95.8%. However, for the remaining study period, the data with radiology departments registered as the main department were lacking in the version from Statistics Denmark, and so the overall completeness was 73.1%. Conclusion: The completeness of CXR registrations varied between 98% and 73% depending on the information source, and this should be considered when investigating radiology services in the basis of DNPR. Keywords: chest X-ray, Danish National Patient Registry

Performance evaluation of 2D image registration algorithms with the numeric image registration and comparison platform

International Nuclear Information System (INIS)

Gerganov, G.; Kuvandjiev, V.; Dimitrova, I.; Mitev, K.; Kawrakow, I.

2012-01-01

The objective of this work is to present the capabilities of the NUMERICS web platform for evaluation of the performance of image registration algorithms. The NUMERICS platform is a web accessible tool which provides access to dedicated numerical algorithms for registration and comparison of medical images (http://numerics.phys.uni-sofia.bg). The platform allows comparison of noisy medical images by means of different types of image comparison algorithms, which are based on statistical tests for outliers. The platform also allows 2D image registration with different techniques like Elastic Thin-Plate Spline registration, registration based on rigid transformations, affine transformations, as well as non-rigid image registration based on Mobius transformations. In this work we demonstrate how the platform can be used as a tool for evaluation of the quality of the image registration process. We demonstrate performance evaluation of a deformable image registration technique based on Mobius transformations. The transformations are applied with appropriate cost functions like: Mutual information, Correlation coefficient, Sum of Squared Differences. The accent is on the results provided by the platform to the user and their interpretation in the context of the performance evaluation of 2D image registration. The NUMERICS image registration and image comparison platform provides detailed statistical information about submitted image registration jobs and can be used to perform quantitative evaluation of the performance of different image registration techniques. (authors)

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...

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...

Cancer registration data and quality indicators in low and middle income countries: their interpretation and potential use for the improvement of cancer care.

Science.gov (United States)

Curado, Maria Paula; Voti, Lydia; Sortino-Rachou, Ana Maria

2009-07-01

Cancer registration data plays a major role in the design and monitoring of cancer control activities and policies, and population-based cancer registries (PBCR) are the main source of information. In developed countries, the healthcare infrastructure enables the registration of quality cancer data. In low and middle Income countries (LMIC), where health care facilities are limited or scarce, cancer registration data may be of low quality. The aim of this article is to demonstrate the value of cancer incidence data for LMIC, even when quality is questionable, as well as to attempt to interpret the messages that the quality indicators convey both for cancer registration and the healthcare system. The study of data submitted to the Cancer incidence in five continents, volume nine (CI5-IX) leads to the conclusion that when PBCR from LMIC cannot provide good quality data it may indicate a deficiency that goes above and beyond the registrar ability. The quality control indicators evaluated provide insight on local conditions for cancer diagnosis and care. Low data quality not only signals lack of collaboration among reporting sources and the inability of the registrar to perform quality abstracting, but also points to specific weaknesses of the cancer care system and can guide improvement goals and efforts.

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...

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.

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.

Image registration with uncertainty analysis

Science.gov (United States)

Simonson, Katherine M [Cedar Crest, NM

2011-03-22

In an image registration method, edges are detected in a first image and a second image. A percentage of edge pixels in a subset of the second image that are also edges in the first image shifted by a translation is calculated. A best registration point is calculated based on a maximum percentage of edges matched. In a predefined search region, all registration points other than the best registration point are identified that are not significantly worse than the best registration point according to a predetermined statistical criterion.

Retrivability in The Danish National Hospital Registry of HIV and hepatitis B and C coinfection diagnoses of patients managed in HIV centers 1995-2004

DEFF Research Database (Denmark)

Obel, N.; Reinholdt, H.; Omland, L.H.

2008-01-01

BACKGROUND: Hospital-based discharge registries are used increasingly for longitudinal epidemiological studies of HIV. We examined completeness of registration of HIV infections and of chronic hepatitis B (HBV) and hepatitis C (HCV) coinfections in the Danish National Hospital Registry (DNHR......) covering all Danish hospitals. METHODS: The Danish HIV Cohort Study (DHCS) encompasses all HIV-infected patients treated in Danish HIV clinics since 1 January 1995. All 2,033 Danish patients in DHCS diagnosed with HIV-1 during the 10-year period from 1 January 1995 to 31 December 2004 were included....... The positive predictive values of being registered with HBV and HCV in DHCS were thereby estimated to 0.88 and 0.97 and in DNHR to 0.32 and 0.54. CONCLUSION: The study demonstrates that secondary data from national hospital databases may be reliable for identification of patients diagnosed with HIV infection...

A Remote Registration Based on MIDAS

Science.gov (United States)

JIN, Xin

2017-04-01

We often need for software registration to protect the interests of the software developers. This article narrated one kind of software long-distance registration technology. The registration method is: place the registration information in a database table, after the procedure starts in check table registration information, if it has registered then the procedure may the normal operation; Otherwise, the customer must input the sequence number and registers through the network on the long-distance server. If it registers successfully, then records the registration information in the database table. This remote registration method can protect the rights of software developers.

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.

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.

Unreported links between trial registrations and published articles were identified using document similarity measures in a cross-sectional analysis of ClinicalTrials.gov.

Science.gov (United States)

Dunn, Adam G; Coiera, Enrico; Bourgeois, Florence T

2018-03-01

Trial registries can be used to measure reporting biases and support systematic reviews, but 45% of registrations do not provide a link to the article reporting on the trial. We evaluated the use of document similarity methods to identify unreported links between ClinicalTrials.gov and PubMed. We extracted terms and concepts from a data set of 72,469 ClinicalTrials.gov registrations and 276,307 PubMed articles and tested methods for ranking articles across 16,005 reported links and 90 manually identified unreported links. Performance was measured by the median rank of matching articles and the proportion of unreported links that could be found by screening ranked candidate articles in order. The best-performing concept-based representation produced a median rank of 3 (interquartile range [IQR] 1-21) for reported links and 3 (IQR 1-19) for the manually identified unreported links, and term-based representations produced a median rank of 2 (1-20) for reported links and 2 (IQR 1-12) in unreported links. The matching article was ranked first for 40% of registrations, and screening 50 candidate articles per registration identified 86% of the unreported links. Leveraging the growth in the corpus of reported links between ClinicalTrials.gov and PubMed, we found that document similarity methods can assist in the identification of unreported links between trial registrations and corresponding articles. Copyright © 2017 Elsevier Inc. All rights reserved.

Image Registration: A Necessary Evil

Science.gov (United States)

Bell, James; McLachlan, Blair; Hermstad, Dexter; Trosin, Jeff; George, Michael W. (Technical Monitor)

1995-01-01

Registration of test and reference images is a key component of nearly all PSP data reduction techniques. This is done to ensure that a test image pixel viewing a particular point on the model is ratioed by the reference image pixel which views the same point. Typically registration is needed to account for model motion due to differing airloads when the wind-off and wind-on images are taken. Registration is also necessary when two cameras are used for simultaneous acquisition of data from a dual-frequency paint. This presentation will discuss the advantages and disadvantages of several different image registration techniques. In order to do so, it is necessary to propose both an accuracy requirement for image registration and a means for measuring the accuracy of a particular technique. High contrast regions in the unregistered images are most sensitive to registration errors, and it is proposed that these regions be used to establish the error limits for registration. Once this is done, the actual registration error can be determined by locating corresponding points on the test and reference images, and determining how well a particular registration technique matches them. An example of this procedure is shown for three transforms used to register images of a semispan model. Thirty control points were located on the model. A subset of the points were used to determine the coefficients of each registration transform, and the error with which each transform aligned the remaining points was determined. The results indicate the general superiority of a third-order polynomial over other candidate transforms, as well as showing how registration accuracy varies with number of control points. Finally, it is proposed that image registration may eventually be done away with completely. As more accurate image resection techniques and more detailed model surface grids become available, it will be possible to map raw image data onto the model surface accurately. Intensity

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 ...

Automating Registration of Digital Preservation Copies: The Place of Registries in the Digitization Workflow

Directory of Open Access Journals (Sweden)

William Carney

2008-03-01

Full Text Available I would like to thank LIBER and EBLIDA for inviting me to present this paper on the role of registries in the digitization workflow. During the past 18 months, OCLC has been working on a project to synchronize WorldCat with mass digitization projects, which we will begin to pilot shortly. The concept is to educate WorldCat about the millions of new digital manifestations for print items being produced. During the past 35 years, librarians have built a comprehensive representation of print materials and holdings in WorldCat item-by-item. However, as we move into a more digital world through the production of born-digital materials and the high-volume reformatting of our print heritage, it is impractical to catalog these new manifestations via traditional workflows. The OCLC eContent Synchronization program is one example of how OCLC is moving to address the need to ingest metadata representing digital works on an industrial scale. Through strategic alliances with key digital content producers and automated processing, new digital surrogate records will be created to increase the visibility of and access to content at the point of need. While the eContent Synchronization program is an important initiative for visibility and access, of equal importance is the process of registering the existence of the preservation copies of these digital items.

TU-B-19A-01: Image Registration II: TG132-Quality Assurance for Image Registration

International Nuclear Information System (INIS)

Brock, K; Mutic, S

2014-01-01

AAPM Task Group 132 was charged with a review of the current approaches and solutions for image registration in radiotherapy and to provide recommendations for quality assurance and quality control of these clinical processes. As the results of image registration are always used as the input of another process for planning or delivery, it is important for the user to understand and document the uncertainty associate with the algorithm in general and the Result of a specific registration. The recommendations of this task group, which at the time of abstract submission are currently being reviewed by the AAPM, include the following components. The user should understand the basic image registration techniques and methods of visualizing image fusion. The disclosure of basic components of the image registration by commercial vendors is critical in this respect. The physicists should perform end-to-end tests of imaging, registration, and planning/treatment systems if image registration is performed on a stand-alone system. A comprehensive commissioning process should be performed and documented by the physicist prior to clinical use of the system. As documentation is important to the safe implementation of this process, a request and report system should be integrated into the clinical workflow. Finally, a patient specific QA practice should be established for efficient evaluation of image registration results. The implementation of these recommendations will be described and illustrated during this educational session. Learning Objectives: Highlight the importance of understanding the image registration techniques used in their clinic. Describe the end-to-end tests needed for stand-alone registration systems. Illustrate a comprehensive commissioning program using both phantom data and clinical images. Describe a request and report system to ensure communication and documentation. Demonstrate an clinically-efficient patient QA practice for efficient evaluation of image

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.

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.

Content Model Use and Development to Redeem Thin Section Records

Science.gov (United States)

Hills, D. J.

2014-12-01

The National Geothermal Data System (NGDS) is a catalog of documents and datasets that provide information about geothermal resources located primarily within the United States. The goal of NGDS is to make large quantities of geothermal-relevant geoscience data available to the public by creating a national, sustainable, distributed, and interoperable network of data providers. The Geological Survey of Alabama (GSA) has been a data provider in the initial phase of NGDS. One method by which NGDS facilitates interoperability is through the use of content models. Content models provide a schema (structure) for submitted data. Schemas dictate where and how data should be entered. Content models use templates that simplify data formatting to expedite use by data providers. These methodologies implemented by NGDS can extend beyond geothermal data to all geoscience data. The GSA, using the NGDS physical samples content model, has tested and refined a content model for thin sections and thin section photos. Countless thin sections have been taken from oil and gas well cores housed at the GSA, and many of those thin sections have related photomicrographs. Record keeping for these thin sections has been scattered at best, and it is critical to capture their metadata while the content creators are still available. A next step will be to register the GSA's thin sections with SESAR (System for Earth Sample Registration) and assign an IGSN (International Geo Sample Number) to each thin section. Additionally, the thin section records will be linked to the GSA's online record database. When complete, the GSA's thin sections will be more readily discoverable and have greater interoperability. Moving forward, the GSA is implementing use of NGDS-like content models and registration with SESAR and IGSN to improve collection maintenance and management of additional physical samples.

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.

Leading Efforts to Increase Organ Donation Through Professionalization of Organ Procurement Organizations and Establishment of Organ and Tissue Donor Registries.

Science.gov (United States)

Vertanous, T; Czer, L S C; de Robertis, M; Kiankhooy, A; Kobashigawa, J; Esmailian, F; Trento, A

2016-01-01

The influence of new donor registrations through the California Organ and Tissue Donor Registry on the local OneLegacy Organ Procurement Organization (OPO) was examined during a 6-year period. Publicly available data from Donate Life America for California were examined for the 6 calendar years of 2009-2014. Performance data from OneLegacy for the same 6 years for organ donors and number of transplants were also examined. The donor designation rate (DDR) was defined as the rate at which new individuals joined the state donor registry as a percentage of all driver licenses and ID cards issued within a calendar year. The total donor designation (TDD) was defined as the sum of the new and existing people who were registered organ donors. Donor designation share (DDS) was the total number of designated donors as a percentage of all residents of the state who were ≥18 years old. The business practices and educational efforts of the OneLegacy OPO were examined as well. In California, from 2009 through 2014, the DDR was 25.5%-28%. When added to the existing donor registrations, the TDD and DDS increased each year from 2009 through 2014. With the current level of growth, it is projected that California will be able to reach a DDS of 50% by 2017. For the OneLegacy OPO, designated donors from the California Organ and Tissue Donor Registry made up 15% of the total donations in 2009, and 39% of the total donations in 2014, increasing by ∼5% each year since 2009. By increasing professionalization and transparency, and widening its educational and training efforts, OneLegacy was able to take advantage of an increasing percentage of donors who were designated donors and to increase the overall number of donors and organs transplanted, becoming one of the largest OPOs in the nation. This can be a model for OPOs in other donor service areas, and it may set the stage for the United States to serve as an example to the global community in the practice of organ donation. Copyright

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).

A review of the structure and function of vital registration system in Ghana: towards improvement in mortality data quality for health policy analysis

Directory of Open Access Journals (Sweden)

Julius N. Fobil

2011-03-01

Full Text Available Vital registration systems (VRS are important in the collection of routine data on indicators of development. These are particularly useful if they are properly built to address weaknesses in the system leading to poor data quality. For instance, routine data on health events (e.g. morbidity, mortality etc. are crucial for rapid assessment of disease burden and mortality trends in the population. They are also useful in the identification of vulnerable groups in populations. Despite their usefulness, VRS in many developing countries including Ghana are poorly structured raising questions about the quality of the output data from these systems. The present study aimed at assessing and documenting the structure and function of the VRS in Ghana, as well as at identifying the structural features that potentially compromise the reliability and validity of the output data the system. To perform this study, collection and review of policy and legal documents establishing the VRS, documentation and evaluation of component structures of the system, assessment of procedural protocols guiding data collection processes and in-depth interviews with staff at the Ghana Births and Deaths Registry were performed. The assessment of the structure of the Ghana VRS, policy documents setting it up and the operational procedures reveals important lapses (e.g. presence of outmoded practices, imperfections in Births and Deaths Registry Act, 1965, Act 301 and imperfect system design in the system that could compromise validity and reliability of the data generated from the registration in Ghana.

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

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...

The hidden KPI registration accuracy.

Science.gov (United States)

Shorrosh, Paul

2011-09-01

Determining the registration accuracy rate is fundamental to improving revenue cycle key performance indicators. A registration quality assurance (QA) process allows errors to be corrected before bills are sent and helps registrars learn from their mistakes. Tools are available to help patient access staff who perform registration QA manually.

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.

12 CFR 583.18 - Registrant.

Science.gov (United States)

2010-01-01

... 12 Banks and Banking 5 2010-01-01 2010-01-01 false Registrant. 583.18 Section 583.18 Banks and Banking OFFICE OF THRIFT SUPERVISION, DEPARTMENT OF THE TREASURY DEFINITIONS FOR REGULATIONS AFFECTING SAVINGS AND LOAN HOLDING COMPANIES § 583.18 Registrant. The term registrant means a savings and loan...

Building a National Heritage Registry for the Sudan: the Friedrich W. Hinkel Archive Digitization Project

Science.gov (United States)

Lawrenz, S.

2017-08-01

The Republic of the Sudan is home to outstanding and diverse cultural heritage ranging from Neolithic sites of human activity and settlement to historic sites of the 19th and 20th century. While certain phases of the Sudan's cultural heritage such as the period of Egyptian influence during the second and first millennium B.C. have been the focus of archaeological research since the 19th century, other aspects of the country's rich history have remained largely unknown locally and internationally due to a lack of documentation and registration of such sites. Since 2014, the German Archaeological Institute (DAI) has been engaged in an effort to support the creation of a national heritage registry in close cooperation with the National Corporation for Antiquities and Museums (NCAM) by digitizing the archive of German architect Friedrich W. Hinkel and engaging in capacity building measures focusing on analog and digital data curation. The archive contains structured information (photos, drawings, maps and assembled written documentation) regarding over 14,000 archaeological and historical sites in the Sudan using an alphanumeric coding system that allows for easy integration of data in a digital environment such as the DAI's IT infrastructure, the iDAI.world. As such the data assembled by Hinkel will serve as the basis of the national heritage registry currently in development.

77 FR 66920 - Registration of Claims to Copyright: Group Registration of Serial Issues Filed Electronically

Science.gov (United States)

2012-11-08

... registered on a single application and for a single fee. The group registration privilege is contingent upon... was limited to basic registrations, i.e., claims in single works, while the capacity to process online... of related serials. Revisions to the electronic registration system will upgrade the capacity of the...

Automatic registration using implicit shape representations: applications in intraoperative 3D rotational angiography to preoperative CTA registration

International Nuclear Information System (INIS)

Subramanian, Navneeth; Pichon, Eric; Solomon, Stephen B.

2009-01-01

A solution for automatic registration of 3D rotational angiography (XA) to CT/MR of the liver. Targeted for use in treatment planning of liver interventions. A shape-based approach to registration is proposed that does not require specification of landmarks nor is it prone to local minima like purely intensity-based registration methods. Through the use of vessel characteristics, accurate registration is possible even in the presence of deformations induced by catheters and respiratory motion. Registration was performed on eight pairs of multiphase CT angiography and 3D rotational digital angiography datasets. Quantitative validation of the registration accuracy using vessel landmarks was performed on these datasets. The validation study showed that the method has a registration error of 9.41±4.13 mm. In addition, the computation time is well below 60 s making it attractive for clinical application. A new method for fully automatic 3DXA to CT/MR image registration was developed and found to be efficient and accurate using clinically realistic datasets. (orig.)

re3data.org - a global registry of research data repositories

Science.gov (United States)

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

2016-04-01

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

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...

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...

A Model-Driven, Science Data Product Registration Service

Science.gov (United States)

Hardman, S.; Ramirez, P.; Hughes, J. S.; Joyner, R.; Cayanan, M.; Lee, H.; Crichton, D. J.

2011-12-01

The Planetary Data System (PDS) has undertaken an effort to overhaul the PDS data architecture (including the data model, data structures, data dictionary, etc.) and to deploy an upgraded software system (including data services, distributed data catalog, etc.) that fully embraces the PDS federation as an integrated system while taking advantage of modern innovations in information technology (including networking capabilities, processing speeds, and software breakthroughs). A core component of this new system is the Registry Service that will provide functionality for tracking, auditing, locating, and maintaining artifacts within the system. These artifacts can range from data files and label files, schemas, dictionary definitions for objects and elements, documents, services, etc. This service offers a single reference implementation of the registry capabilities detailed in the Consultative Committee for Space Data Systems (CCSDS) Registry Reference Model White Book. The CCSDS Reference Model in turn relies heavily on the Electronic Business using eXtensible Markup Language (ebXML) standards for registry services and the registry information model, managed by the OASIS consortium. Registries are pervasive components in most information systems. For example, data dictionaries, service registries, LDAP directory services, and even databases provide registry-like services. These all include an account of informational items that are used in large-scale information systems ranging from data values such as names and codes, to vocabularies, services and software components. The problem is that many of these registry-like services were designed with their own data models associated with the specific type of artifact they track. Additionally these services each have their own specific interface for interacting with the service. This Registry Service implements the data model specified in the ebXML Registry Information Model (RIM) specification that supports the various

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 ...

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.

Revisiting the Brazilian scenario of registry and protection of cultivars: an analysis of the period from 1998 to 2010, its dynamics and legal observations.

Science.gov (United States)

Marinho, C D; Martins, F J O; Amaral, S C S; Amaral Júnior, A T; Gonçalves, L S A; de Mello, M P

2011-05-03

During the last 20 years, the national production of grains has increased 156.1%; productivity increased 93.8% and there has been an increase of 29.1% in cultivated area. Currently, agribusiness is responsible for 40% of Brazilian exports. Nevertheless, there is little quantitative information on the main plant species of economic interest that have been registered and protected in the Agriculture, Fisheries and Food Supply Ministry (MAPA) by public and private companies, as well as by public-private partnerships. Consequently, we investigated the registry and protection of 27 species of economic interest, including the 15 that are the basis of the Brazilian diet, based on the information available on the site CultivarWeb, of MAPA, for the period from 1998 to August 30, 2010. We also examined the legislation that regulates registration and protection procedures and its implications for plant breeding and plant product development. It was found that the private sector controls 73.1% of the registrations and 53.56% of the protections, while 10.73% of the protections were of material developed overseas. Public-private partnerships contributed little to the development of new cultivars, with 0.5% of the registries and 3.61% of the protections. We conclude that plant protection directed private investment to development of wheat and rice varieties, with the greatest public investments directed to corn and sorghum. After the Cultivar Protection Law was implemented, there was restriction of access to germplasm banks, which could inhibit advances in Brazilian plant breeding programs, indicating a need for revision of this legal barrier.

Efficient nonrigid registration using ranked order statistics

DEFF Research Database (Denmark)

Tennakoon, Ruwan B.; Bab-Hadiashar, Alireza; de Bruijne, Marleen

2013-01-01

of research. In this paper we propose a fast and accurate non-rigid registration method for intra-modality volumetric images. Our approach exploits the information provided by an order statistics based segmentation method, to find the important regions for registration and use an appropriate sampling scheme......Non-rigid image registration techniques are widely used in medical imaging applications. Due to high computational complexities of these techniques, finding appropriate registration method to both reduce the computation burden and increase the registration accuracy has become an intense area...... to target those areas and reduce the registration computation time. A unique advantage of the proposed method is its ability to identify the point of diminishing returns and stop the registration process. Our experiments on registration of real lung CT images, with expert annotated landmarks, show...

Beating-heart registration for organ-mounted robots.

Science.gov (United States)

Wood, Nathan A; Schwartzman, David; Passineau, Michael J; Moraca, Robert J; Zenati, Marco A; Riviere, Cameron N

2018-03-06

Organ-mounted robots address the problem of beating-heart surgery by adhering to the heart, passively providing a platform that approaches zero relative motion. Because of the quasi-periodic deformation of the heart due to heartbeat and respiration, registration must address not only spatial registration but also temporal registration. Motion data were collected in the porcine model in vivo (N = 6). Fourier series models of heart motion were developed. By comparing registrations generated using an iterative closest-point approach at different phases of respiration, the phase corresponding to minimum registration distance is identified. The spatiotemporal registration technique presented here reduces registration error by an average of 4.2 mm over the 6 trials, in comparison with a more simplistic static registration that merely averages out the physiological motion. An empirical metric for spatiotemporal registration of organ-mounted robots is defined and demonstrated using data from animal models in vivo. Copyright © 2018 John Wiley & Sons, Ltd.

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.

Defibrillator implantations for primary prevention in the United States: Inappropriate care or inadequate documentation: Insights from the National Cardiovascular Data ICD Registry.

Science.gov (United States)

Kaiser, Daniel W; Tsai, Vivian; Heidenreich, Paul A; Goldstein, Mary K; Wang, Yongfei; Curtis, Jeptha; Turakhia, Mintu P

2015-10-01

Prior studies have reported that more than 20% of implantable cardioverter-defibrillator (ICD) implantations in the United States do not adhere to trial-based criteria. We sought to investigate the patient characteristics associated with not meeting the inclusion criteria of the clinical trials that have demonstrated the efficacy of primary prevention ICDs. Using data from the National Cardiovascular Data Registry's ICD Registry, we identified patients who received ICDs for primary prevention from January 2006 to December 2008. We determined whether patients met the inclusion criteria of at least 1 of the 4 ICD primary prevention trials: Multicenter Automatic Defibrillator Implantation Trial (MADIT), MADIT-II, Sudden Cardiac Death in Heart Failure Trial (SCD-HeFT), and the Multicenter Unsustained Tachycardia Trial (MUSTT). Among 150,264 patients, 86% met criteria for an ICD implantation based on trial data. The proportion of patients who did not meet trial-based criteria increased as age decreased. In multivariate analysis, the significant predictors for not meeting trial criteria included prior cardiac transplantation (odds ratio [OR] 2.1), pediatric electrophysiology operator (OR 2.0), and high-grade atrioventricular conduction disease (OR 1.4). Among National Cardiovascular Data Registry registrants receiving first-time ICDs for primary prevention, the majority met trial-based criteria. Multivariate analyses suggested that many patients who did not meet the trial-based criteria may have had clinical circumstances that warranted ICD implantation. These findings caution against the use of trial-based indications to determine site quality metrics that could penalize sites that care for younger patients. The planned incorporation of appropriate use criteria into the ICD registry may better characterize patient- and site-level quality and performance. Published by Elsevier Inc.

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...

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

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.

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.

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.

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.

40 CFR 164.21 - Contents of a denial of registration, notice of intent to cancel a registration, or notice of...

Science.gov (United States)

2010-07-01

..., notice of intent to cancel a registration, or notice of intent to change a classification. 164.21 Section... denial of registration, notice of intent to cancel a registration, or notice of intent to change a classification. (a) Contents. The denial of registration or a notice of intent to cancel a registration or to...

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

Collateral Consequences and Effectiveness of Sex Offender Registration and Notification: Law Enforcement Perspectives.

Science.gov (United States)

Cubellis, Michelle A; Walfield, Scott M; Harris, Andrew J

2018-03-01

A growing body of research has examined the collateral effects of sex offender registration and notification (SORN), particularly those related to offenders' social and economic reintegration into society. Although studies have examined public, offender, treatment provider, and other criminal justice perspectives on SORN's collateral impacts, few have elicited the views of law enforcement (LE) professionals who have contact with registered offenders. This study presents results from a mixed method study examining LE perspectives on collateral consequences and effectiveness of SORN. Results indicate that, although overall LE concern regarding collateral impacts is limited, those who are most engaged in SORN-related duties are significantly more likely to indicate such concern, and also more likely to believe that SORN was an effective public safety tool. Importantly, respondents in states with larger registries expressed greater concern over collateral consequences, and less belief in SORN's public safety efficacy. Implications for policy and practice are discussed.

Image registration with auto-mapped control volumes

International Nuclear Information System (INIS)

Schreibmann, Eduard; Xing Lei

2006-01-01

Many image registration algorithms rely on the use of homologous control points on the two input image sets to be registered. In reality, the interactive identification of the control points on both images is tedious, difficult, and often a source of error. We propose a two-step algorithm to automatically identify homologous regions that are used as a priori information during the image registration procedure. First, a number of small control volumes having distinct anatomical features are identified on the model image in a somewhat arbitrary fashion. Instead of attempting to find their correspondences in the reference image through user interaction, in the proposed method, each of the control regions is mapped to the corresponding part of the reference image by using an automated image registration algorithm. A normalized cross-correlation (NCC) function or mutual information was used as the auto-mapping metric and a limited memory Broyden-Fletcher-Goldfarb-Shanno algorithm (L-BFGS) was employed to optimize the function to find the optimal mapping. For rigid registration, the transformation parameters of the system are obtained by averaging that derived from the individual control volumes. In our deformable calculation, the mapped control volumes are treated as the nodes or control points with known positions on the two images. If the number of control volumes is not enough to cover the whole image to be registered, additional nodes are placed on the model image and then located on the reference image in a manner similar to the conventional BSpline deformable calculation. For deformable registration, the established correspondence by the auto-mapped control volumes provides valuable guidance for the registration calculation and greatly reduces the dimensionality of the problem. The performance of the two-step registrations was applied to three rigid registration cases (two PET-CT registrations and a brain MRI-CT registration) and one deformable registration of

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...

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,

46 CFR 402.220 - Registration of pilots.

Science.gov (United States)

2010-10-01

... 46 Shipping 8 2010-10-01 2010-10-01 false Registration of pilots. 402.220 Section 402.220 Shipping... ORDERS Registration of Pilots § 402.220 Registration of pilots. (a) Each applicant pilot must complete the number of round trips specified in this section prior to registration as a U.S. registered pilot...

A novel 3D volumetric voxel registration technique for volume-view-guided image registration of multiple imaging modalities

International Nuclear Information System (INIS)

Li Guang; Xie Huchen; Ning, Holly; Capala, Jacek; Arora, Barbara C.; Coleman, C. Norman; Camphausen, Kevin; Miller, Robert W.

2005-01-01

Purpose: To provide more clinically useful image registration with improved accuracy and reduced time, a novel technique of three-dimensional (3D) volumetric voxel registration of multimodality images is developed. Methods and Materials: This technique can register up to four concurrent images from multimodalities with volume view guidance. Various visualization effects can be applied, facilitating global and internal voxel registration. Fourteen computed tomography/magnetic resonance (CT/MR) image sets and two computed tomography/positron emission tomography (CT/PET) image sets are used. For comparison, an automatic registration technique using maximization of mutual information (MMI) and a three-orthogonal-planar (3P) registration technique are used. Results: Visually sensitive registration criteria for CT/MR and CT/PET have been established, including the homogeneity of color distribution. Based on the registration results of 14 CT/MR images, the 3D voxel technique is in excellent agreement with the automatic MMI technique and is indicatory of a global positioning error (defined as the means and standard deviations of the error distribution) using the 3P pixel technique: 1.8 deg ± 1.2 deg in rotation and 2.0 ± 1.3 (voxel unit) in translation. To the best of our knowledge, this is the first time that such positioning error has been addressed. Conclusion: This novel 3D voxel technique establishes volume-view-guided image registration of up to four modalities. It improves registration accuracy with reduced time, compared with the 3P pixel technique. This article suggests that any interactive and automatic registration should be safeguarded using the 3D voxel technique

Spherical Demons: Fast Surface Registration

Science.gov (United States)

Yeo, B.T. Thomas; Sabuncu, Mert; Vercauteren, Tom; Ayache, Nicholas; Fischl, Bruce; Golland, Polina

2009-01-01

We present the fast Spherical Demons algorithm for registering two spherical images. By exploiting spherical vector spline interpolation theory, we show that a large class of regularizers for the modified demons objective function can be efficiently implemented on the sphere using convolution. Based on the one parameter subgroups of diffeomorphisms, the resulting registration is diffeomorphic and fast – registration of two cortical mesh models with more than 100k nodes takes less than 5 minutes, comparable to the fastest surface registration algorithms. Moreover, the accuracy of our method compares favorably to the popular FreeSurfer registration algorithm. We validate the technique in two different settings: (1) parcellation in a set of in-vivo cortical surfaces and (2) Brodmann area localization in ex-vivo cortical surfaces. PMID:18979813

32 CFR 634.19 - Registration policy.

Science.gov (United States)

2010-07-01

... 32 National Defense 4 2010-07-01 2010-07-01 true Registration policy. 634.19 Section 634.19 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS MOTOR VEHICLE TRAFFIC SUPERVISION Motor Vehicle Registration § 634.19 Registration policy. (a) Motor vehicles will be...

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,...

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...

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...

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.

The incidence and repetition of hospital-treated deliberate self harm: findings from the world's first national registry.

Directory of Open Access Journals (Sweden)

Ivan J Perry

Full Text Available Suicide is a significant public health issue with almost one million people dying by suicide each year worldwide. Deliberate self harm (DSH is the single most important risk factor for suicide yet few countries have reliable data on DSH. We developed a national DSH registry in the Republic of Ireland to establish the incidence of hospital-treated DSH at national level and the spectrum and pattern of presentations with DSH and repetition.Between 2003 and 2009, the Irish National Registry of Deliberate Self Harm collected data on DSH presentations to all 40 hospital emergency departments in the country. Data were collected by trained data registration officers using standard methods of case ascertainment and definition. The Registry recorded 75,119 DSH presentations involving 48,206 individuals. The total incidence rate fell from 209 (95% CI: 205-213 per 100,000 in 2003 to 184 (95% CI: 180-189 per 100,000 in 2006 and increased again to 209 (95% CI: 204-213 per 100,000 in 2009. The most notable annual changes were successive 10% increases in the male rate in 2008 and 2009. There was significant variation by age with peak rates in women in the 15-19 year age group (620 (95% CI: 605-636 per 100,000, and in men in the 20-24 age group (427 (95% CI: 416-439 per 100,000. Repetition rates varied significantly by age, method of self harm and number of previous episodes.Population-based data on hospital-treated DSH represent an important index of the burden of mental illness and suicide risk in the community. The increased DSH rate in Irish men in 2008 and 2009 coincided with the advent of the economic recession in Ireland. The findings underline the need for developing effective interventions to reduce DSH repetition rates as a key priority for health systems.

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.

Victoria's review of registration for health practitioners.

Science.gov (United States)

Scotts, H; Carter, M

1988-01-01

This article discusses some of the issues raised in the Interim Report of the current Review of Registration of Health Practitioners being conducted for the Victorian Health Department. The Report attempts to develop the framework in which the registration Boards will operate as part of a cohesive registration system. It proposed a mechanism and criteria for the registration of new groups as well as principles which can be applied to the ongoing review of each existing Board. The Review takes the perspective that registration of health practitioners carries with it both advantages and disadvantages for the general community. Under the proposed new system the controls exercised over health care providers by Registration Boards would be evaluated on the basis of to what extent the benefits to the public outweighed the potential costs. It is in this context that the Report addresses issues such as consumer complaints handling, registration of individual practitioners and controls over professional advertising and other business practices.

Locally orderless registration code

DEFF Research Database (Denmark)

2012-01-01

This is code for the TPAMI paper "Locally Orderless Registration". The code requires intel threadding building blocks installed and is provided for 64 bit on mac, linux and windows.......This is code for the TPAMI paper "Locally Orderless Registration". The code requires intel threadding building blocks installed and is provided for 64 bit on mac, linux and windows....

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....

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

Deformable Registration for Longitudinal Breast MRI Screening.

Science.gov (United States)

Mehrabian, Hatef; Richmond, Lara; Lu, Yingli; Martel, Anne L

2018-04-13

MRI screening of high-risk patients for breast cancer provides very high sensitivity, but with a high recall rate and negative biopsies. Comparing the current exam to prior exams reduces the number of follow-up procedures requested by radiologists. Such comparison, however, can be challenging due to the highly deformable nature of breast tissues. Automated co-registration of multiple scans has the potential to aid diagnosis by providing 3D images for side-by-side comparison and also for use in CAD systems. Although many deformable registration techniques exist, they generally have a large number of parameters that need to be optimized and validated for each new application. Here, we propose a framework for such optimization and also identify the optimal input parameter set for registration of 3D T 1 -weighted MRI of breast using Elastix, a widely used and freely available registration tool. A numerical simulation study was first conducted to model the breast tissue and its deformation through finite element (FE) modeling. This model generated the ground truth for evaluating the registration accuracy by providing the deformation of each voxel in the breast volume. An exhaustive search was performed over various values of 7 registration parameters (4050 different combinations of parameters were assessed) and the optimum parameter set was determined. This study showed that there was a large variation in the registration accuracy of different parameter sets ranging from 0.29 mm to 2.50 mm in median registration error and 3.71 mm to 8.90 mm in 95 percentile of the registration error. Mean registration errors of 0.32 mm, 0.29 mm, and 0.30 mm and 95 percentile errors of 3.71 mm, 5.02 mm, and 4.70 mm were obtained by the three best parameter sets. The optimal parameter set was applied to consecutive breast MRI scans of 13 patients. A radiologist identified 113 landmark pairs (~ 11 per patient) which were used to assess registration accuracy. The results demonstrated that

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.

Medical Image Registration and Surgery Simulation

DEFF Research Database (Denmark)

Bro-Nielsen, Morten

1996-01-01

This thesis explores the application of physical models in medical image registration and surgery simulation. The continuum models of elasticity and viscous fluids are described in detail, and this knowledge is used as a basis for most of the methods described here. Real-time deformable models......, and the use of selective matrix vector multiplication. Fluid medical image registration A new and faster algorithm for non-rigid registration using viscous fluid models is presented. This algorithm replaces the core part of the original algorithm with multi-resolution convolution using a new filter, which...... growth is also presented. Using medical knowledge about the growth processes of the mandibular bone, a registration algorithm for time sequence images of the mandible is developed. Since this registration algorithm models the actual development of the mandible, it is possible to simulate the development...

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.

The essential of 2012 results from the French Renal Epidemiology and Information Network (REIN) ESRD registry.

Science.gov (United States)

Lassalle, Mathilde; Ayav, Carole; Frimat, Luc; Jacquelinet, Christian; Couchoud, Cécile

2015-04-01

The French Renal Epidemiology and Information Network (REIN) registry began in 2002 to provide a tool for public health decision support, evaluation and research related to renal replacement therapies (RRT) for end-stage renal disease (ESRD). It is relying on a network of nephrologists, epidemiologists, patients and public health representatives. Continuous registration covers all dialysis and transplanted patients. In 2012, in France, 10,048 patients started a RRT (154 per million inhabitants). Elders provided majority of new patients (median age at RRT start: 70 years old). New patients had a high and age increasing rate of comorbidities, especially diabetes (42% of the new patients) and cardiovascular comorbidities (>50% of the new patients). Like previous years, incidence is stabilized. On December 31, 2012, 73,491 patients were receiving a RRT in France (1127 per million inhabitants, 56% on dialysis and 44% living with a functional renal transplant). More than 50% of patients were undergoing in-center hemodialysis with significant variations among regions. An increase in medical satellite unit hemodialysis but a decrease in self-care unit hemodialysis rates were noticed across the time, whereas peritoneal dialysis remained stable at 7%. Five years after starting RRT, the overall survival rate was 51% but only 16% among patients over 85 years. Mortality rate was highly dependent on treatment and age; transplanted patients aged 60-69 had a 27/1000 patients-year mortality rate versus 133 for a dialysis patient. Patients who started dialysis had a probability of first wait-listing of 4.8% at the start of dialysis (pre-emptive registrations) and 27% at 72 months. Whatever their diabetes status was, patients older than 60 had poor access to the waiting list. Seventeen percent of the patients received a first renal transplant within 15.4 month median time; 3% had received a pre-emptive graft. Ten years after the start of the French ESRD registry, this report provides

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...

[Registration of observational studies: it is time to comply with the Declaration of Helsinki requirement].

Science.gov (United States)

Dal-Ré, Rafael; Delgado, Miguel; Bolumar, Francisco

2015-01-01

Publication bias is a serious deficiency in the current system of disseminating the results of human research studies. Clinical investigators know that, from an ethical standpoint, they should prospectively register clinical trials in a public registry before starting them. In addition, it is believed that this approach will help to reduce publication bias. However, most studies conducted in humans are observational rather than experimental. It is estimated that less than 2% out of 2 million concluded or ongoing observational studies have been registered. The 2013 revision of the Declaration of Helsinki requires registration of any type of research study involving humans or identifiable samples or data. It is proposed that funding agencies, such as the Fondo de Investigaciones Sanitarias, as well as private companies, require preregistration of observational studies before providing funding. It is also proposed that Research Ethics Committees which, following Spanish regulation, have been using the Declaration as the framework for assessing the ethics of clinical trials with medicines since 1990, should follow the same provisions for the assessment of health-related observational studies: therefore, they should require prospective registration of studies before granting their final approval. This would allow observational study investigators to be educated in complying with an ethical requirement recently introduced in the most important ethical code for research involving humans. Copyright © 2014 SESPAS. Published by Elsevier Espana. All rights reserved.

Medical image registration for analysis

International Nuclear Information System (INIS)

Petrovic, V.

2006-01-01

Full text: Image registration techniques represent a rich family of image processing and analysis tools that aim to provide spatial correspondences across sets of medical images of similar and disparate anatomies and modalities. Image registration is a fundamental and usually the first step in medical image analysis and this paper presents a number of advanced techniques as well as demonstrates some of the advanced medical image analysis techniques they make possible. A number of both rigid and non-rigid medical image alignment algorithms of equivalent and merely consistent anatomical structures respectively are presented. The algorithms are compared in terms of their practical aims, inputs, computational complexity and level of operator (e.g. diagnostician) interaction. In particular, the focus of the methods discussion is placed on the applications and practical benefits of medical image registration. Results of medical image registration on a number of different imaging modalities and anatomies are presented demonstrating the accuracy and robustness of their application. Medical image registration is quickly becoming ubiquitous in medical imaging departments with the results of such algorithms increasingly used in complex medical image analysis and diagnostics. This paper aims to demonstrate at least part of the reason why

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.

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...

Surface-based prostate registration with biomechanical regularization

Science.gov (United States)

van de Ven, Wendy J. M.; Hu, Yipeng; Barentsz, Jelle O.; Karssemeijer, Nico; Barratt, Dean; Huisman, Henkjan J.

2013-03-01

Adding MR-derived information to standard transrectal ultrasound (TRUS) images for guiding prostate biopsy is of substantial clinical interest. A tumor visible on MR images can be projected on ultrasound by using MRUS registration. A common approach is to use surface-based registration. We hypothesize that biomechanical modeling will better control deformation inside the prostate than a regular surface-based registration method. We developed a novel method by extending a surface-based registration with finite element (FE) simulation to better predict internal deformation of the prostate. For each of six patients, a tetrahedral mesh was constructed from the manual prostate segmentation. Next, the internal prostate deformation was simulated using the derived radial surface displacement as boundary condition. The deformation field within the gland was calculated using the predicted FE node displacements and thin-plate spline interpolation. We tested our method on MR guided MR biopsy imaging data, as landmarks can easily be identified on MR images. For evaluation of the registration accuracy we used 45 anatomical landmarks located in all regions of the prostate. Our results show that the median target registration error of a surface-based registration with biomechanical regularization is 1.88 mm, which is significantly different from 2.61 mm without biomechanical regularization. We can conclude that biomechanical FE modeling has the potential to improve the accuracy of multimodal prostate registration when comparing it to regular surface-based registration.

40 CFR 68.160 - Registration.

Science.gov (United States)

2010-07-01

... Protection of Environment ENVIRONMENTAL PROTECTION AGENCY (CONTINUED) AIR PROGRAMS (CONTINUED) CHEMICAL ACCIDENT PREVENTION PROVISIONS Risk Management Plan § 68.160 Registration. (a) The owner or operator shall... substances handled in covered processes. (b) The registration shall include the following data: (1...

Registration of Laser Scanning Point Clouds: A Review

Science.gov (United States)

Cheng, Liang; Chen, Song; Xu, Hao; Wu, Yang; Li, Manchun

2018-01-01

The integration of multi-platform, multi-angle, and multi-temporal LiDAR data has become important for geospatial data applications. This paper presents a comprehensive review of LiDAR data registration in the fields of photogrammetry and remote sensing. At present, a coarse-to-fine registration strategy is commonly used for LiDAR point clouds registration. The coarse registration method is first used to achieve a good initial position, based on which registration is then refined utilizing the fine registration method. According to the coarse-to-fine framework, this paper reviews current registration methods and their methodologies, and identifies important differences between them. The lack of standard data and unified evaluation systems is identified as a factor limiting objective comparison of different methods. The paper also describes the most commonly-used point cloud registration error analysis methods. Finally, avenues for future work on LiDAR data registration in terms of applications, data, and technology are discussed. In particular, there is a need to address registration of multi-angle and multi-scale data from various newly available types of LiDAR hardware, which will play an important role in diverse applications such as forest resource surveys, urban energy use, cultural heritage protection, and unmanned vehicles.

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...

Optical registration of spaceborne low light remote sensing camera

Science.gov (United States)

Li, Chong-yang; Hao, Yan-hui; Xu, Peng-mei; Wang, Dong-jie; Ma, Li-na; Zhao, Ying-long

2018-02-01

For the high precision requirement of spaceborne low light remote sensing camera optical registration, optical registration of dual channel for CCD and EMCCD is achieved by the high magnification optical registration system. System integration optical registration and accuracy of optical registration scheme for spaceborne low light remote sensing camera with short focal depth and wide field of view is proposed in this paper. It also includes analysis of parallel misalignment of CCD and accuracy of optical registration. Actual registration results show that imaging clearly, MTF and accuracy of optical registration meet requirements, it provide important guarantee to get high quality image data in orbit.

Skull registration for prone patient position using tracked ultrasound

Science.gov (United States)

Underwood, Grace; Ungi, Tamas; Baum, Zachary; Lasso, Andras; Kronreif, Gernot; Fichtinger, Gabor

2017-03-01

PURPOSE: Tracked navigation has become prevalent in neurosurgery. Problems with registration of a patient and a preoperative image arise when the patient is in a prone position. Surfaces accessible to optical tracking on the back of the head are unreliable for registration. We investigated the accuracy of surface-based registration using points accessible through tracked ultrasound. Using ultrasound allows access to bone surfaces that are not available through optical tracking. Tracked ultrasound could eliminate the need to work (i) under the table for registration and (ii) adjust the tracker between surgery and registration. In addition, tracked ultrasound could provide a non-invasive method in comparison to an alternative method of registration involving screw implantation. METHODS: A phantom study was performed to test the feasibility of tracked ultrasound for registration. An initial registration was performed to partially align the pre-operative computer tomography data and skull phantom. The initial registration was performed by an anatomical landmark registration. Surface points accessible by tracked ultrasound were collected and used to perform an Iterative Closest Point Algorithm. RESULTS: When the surface registration was compared to a ground truth landmark registration, the average TRE was found to be 1.6+/-0.1mm and the average distance of points off the skull surface was 0.6+/-0.1mm. CONCLUSION: The use of tracked ultrasound is feasible for registration of patients in prone position and eliminates the need to perform registration under the table. The translational component of error found was minimal. Therefore, the amount of TRE in registration is due to a rotational component of error.

Pulmonary hypertension associated with rheumatic diseases: baseline characteristics from the Korean registry.

Science.gov (United States)

Jeon, Chan Hong; Chai, Ji-Young; Seo, Young-Il; Jun, Jae-Bum; Koh, Eun-Mi; Lee, Soo-Kon

2012-10-01

The REgistry of Pulmonary Hypertension Associated with Rheumatic Disease (REOPARD) was established in Korea. The baseline data are described from the second year of the registry's operation. Patients with a connective tissue disease (CTD) who met the modified definition of the WHO group I pulmonary arterial hypertension (PAH) were enrolled. PAH was defined as a systolic pulmonary arterial pressure> 40 mmHg by echocardiography or mean pulmonary arterial pressure> 25 mmHg by right heart catheterization. Hemodynamic parameters and clinical data such as demographics, functional class, underlying disease, organ involvement, laboratory tests and current treatment were recorded. A total of 321 patients were enrolled during the 2-year study period from 2008 to 2010. The mean age of the patients at registration was 51.9 years and 87.5% were female. Most patients were diagnosed by echocardiography and only 24 patients (7.5%) underwent cardiac catheterization. Exertional dyspnea was present in 63.6% of patients and 31.8% were New York Heart Association class III or IV. Among the patients, systemic lupus erythematosus accounted for 35.3%, systemic sclerosis 28.3%, rheumatoid arthritis 7.8%, overlap syndrome 9.0%, and mixed connective tissue disease 5.9%. There were no significant differences in hemodynamics, functional class, diffusing capacity and N-terminal pro-brain natriuretic peptide levels between the disease subgroups. Treatments consisted of calcium antagonists (57.0%), endothelin antagonists (32.7%), prostanoids (27.1%), phosphodiesterase-5 inhibitors (14.3%) and combinations (37.4%). Compared with previous studies, the results showed some differences: underlying diseases, functional status and treatments. This may be due to differences in ethnic background and diagnostic methods of our study. © 2012 The Authors International Journal of Rheumatic Diseases © 2012 Asia Pacific League of Associations for Rheumatology and Wiley Publishing Asia Pty Ltd.

[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.

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

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.

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.

[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.

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.

Solid Mesh Registration for Radiotherapy Treatment Planning

DEFF Research Database (Denmark)

Noe, Karsten Østergaard; Sørensen, Thomas Sangild

2010-01-01

We present an algorithm for solid organ registration of pre-segmented data represented as tetrahedral meshes. Registration of the organ surface is driven by force terms based on a distance field representation of the source and reference shapes. Registration of internal morphology is achieved usi...

[Ideas about registration for sodium hyaluronate facial derma fillers].

Science.gov (United States)

Zhao, Peng; Shi, Xinli; Liu, Wenbo; Lu, Hong

2012-09-01

To review the registration and technical data for sodium hyaluronate facial derma fillers. Recent literature concerning registration for sodium hyaluronate facial derma fillers was reviewed and analyzed. The aspects on registration for sodium hyaluronate facial derma fillers include nominating the product, dividing registration unit, filling in a registration application form, preparing the technical data, developing the standard, and developing a registration specification. The main difficulty in registration is how to prepare the research data of that product, so the manufacturers need to enhance their basic research ability and work out a scientific technique routing which could ensure the safety and effectiveness of the product, also help to set up the supportive documents to medical device registration.

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.

Pro Forma Registration of Companies

DEFF Research Database (Denmark)

Werlauff, Erik

2010-01-01

The article analyses the view taken by Community law on companies' pro forma registration in another EU or EEA country. Community law recognises pro forma registration under company law, i.e. a brass plate is sufficient, whereas it does not recognise pro forma registration under tax law, i.......e. a brass plate is not sufficient. The article provides reasons for the differential treatment of the two contexts and clarifies the difference on the basis of the Hubbard criterion, in which it was ruled that the effectiveness of Community law cannot vary according to the various branches of national law....

Fiducial-based registration with a touchable region model.

Science.gov (United States)

Kim, Sungmin; Kazanzides, Peter

2017-02-01

Image-guided surgery requires registration between an image coordinate system and an intraoperative coordinate system that is typically referenced to a tracking device. In fiducial-based registration methods, this is achieved by localizing points (fiducials) in each coordinate system. Often, both localizations are performed manually, first by picking a fiducial point in the image and then by using a hand-held tracked pointer to physically touch the corresponding fiducial on the patient. These manual procedures introduce localization error that is user-dependent and can significantly decrease registration accuracy. Thus, there is a need for a registration method that is tolerant of imprecise fiducial localization in the preoperative and intraoperative phases. We propose the iterative closest touchable point (ICTP) registration framework, which uses model-based localization and a touchable region model. This method consists of three stages: (1) fiducial marker localization in image space, using a fiducial marker model, (2) initial registration with paired-point registration, and (3) fine registration based on the iterative closest point method. We perform phantom experiments with a fiducial marker design that is commonly used in neurosurgery. The results demonstrate that ICTP can provide accuracy improvements compared to the standard paired-point registration method that is widely used for surgical navigation and surgical robot systems, especially in cases where the surgeon introduces large localization errors. The results demonstrate that the proposed method can reduce the effect of the surgeon's localization performance on the accuracy of registration, thereby producing more consistent and less user-dependent registration outcomes.

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.

40 CFR 152.115 - Conditions of registration.

Science.gov (United States)

2010-07-01

... specify any provisions for sale and distribution of existing stocks of the pesticide product. (3) The... PESTICIDE REGISTRATION AND CLASSIFICATION PROCEDURES Agency Review of Applications § 152.115 Conditions of registration. (a) Substantially similar products and new uses. Each registration issued under § 152.113 shall...

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.

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.

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...

Do women spend longer on wait lists for coronary bypass surgery? Analysis of a population-based registry in British Columbia, Canada

Directory of Open Access Journals (Sweden)

Kuramoto Lisa

2007-08-01

Full Text Available Abstract Background Studies have shown patients who are delayed for surgical cardiac revascularization are faced with increased risks of symptom deterioration and death. This could explain the observation that operative mortality among persons undergoing coronary artery bypass surgery (CABG is higher among women than men. However, in jurisdictions that employ priority wait lists to manage access to elective cardiac surgery, there is little information on whether women wait longer than men for CABG. It is therefore difficult to ascertain whether higher operative mortality among women is due to biological differences or to delayed access to elective CABG. Methods Using records from a population-based registry, we compared the wait-list time between women and men in British Columbia (BC between 1990 and 2000. We compared the number of weeks from registration to surgery for equal proportions of women and men, after adjusting for priority, comorbidity and age. Results In BC in the 1990s, 9,167 patients aged 40 years and over were registered on wait lists for CABG and spent a total of 136,071 person-weeks waiting. At the time of registration for CABG, women were more likely to have a comorbid condition than men. We found little evidence to suggest that women waited longer than men for CABG after registration, after adjusting for comorbidity and age, either overall or within three priority groups. Conclusion Our findings support the hypothesis that higher operative mortality during elective CABG operations observed among women is not due to longer delays for the procedure.

32 CFR 635.27 - Vehicle Registration System.

Science.gov (United States)

2010-07-01

... 32 National Defense 4 2010-07-01 2010-07-01 true Vehicle Registration System. 635.27 Section 635.27 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING Offense Reporting § 635.27 Vehicle Registration System. The Vehicle Registration System (VR...

37 CFR 1.293 - Statutory invention registration.

Science.gov (United States)

2010-07-01

... the date of publication of the statutory invention registration; (2) The required fee for filing a request for publication of a statutory invention registration as provided for in § 1.17 (n) or (o); (3) A... application. (b) Any request for publication of a statutory invention registration must include the following...

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...

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.

Registration of the cancer

International Nuclear Information System (INIS)

Morales, F.; Campos, X.

2002-01-01

A database for the registration of the cancer was designed in ambient access, of the Microsoft Office, to take the registrations at national level. With this database the statistics will be obtained about the incidence of the cancer in the population, evaluation of the sanitary services of prevention, diagnose and treatment of the illness, etc. The used codes are according to the listings of code of the Ministry of Health (MINSA) and OPS

46 CFR 401.220 - Registration of pilots.

Science.gov (United States)

2010-10-01

... 46 Shipping 8 2010-10-01 2010-10-01 false Registration of pilots. 401.220 Section 401.220 Shipping... Registration of Pilots § 401.220 Registration of pilots. (a) The Director shall determine the number of pilots... waters of the Great Lakes and to provide for equitable participation of United States Registered Pilots...

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

Science.gov (United States)

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

2013-04-01

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

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

International Nuclear Information System (INIS)

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

2013-01-01

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

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

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

Registration of 3-dimensional facial photographs for clinical use.

Science.gov (United States)

Maal, Thomas J J; van Loon, Bram; Plooij, Joanneke M; Rangel, Frits; Ettema, Anke M; Borstlap, Wilfred A; Bergé, Stefaan J

2010-10-01

To objectively evaluate treatment outcomes in oral and maxillofacial surgery, pre- and post-treatment 3-dimensional (3D) photographs of the patient's face can be registered. For clinical use, it is of great importance that this registration process is accurate (photographs were captured at 3 different times: baseline (T(0)), after 1 minute (T(1)), and 3 weeks later (T(2)). Furthermore, a 3D photograph of the volunteer laughing (T(L)) was acquired to investigate the effect of facial expression. Two different registration methods were used to register the photographs acquired at all different times: surface-based registration and reference-based registration. Within the surface-based registration, 2 different software packages (Maxilim [Medicim NV, Mechelen, Belgium] and 3dMD Patient [3dMD LLC, Atlanta, GA]) were used to register the 3D photographs acquired at the various times. The surface-based registration process was repeated with the preprocessed photographs. Reference-based registration (Maxilim) was performed twice by 2 observers investigating the inter- and intraobserver error. The mean registration errors are small for the 3D photographs at rest (0.39 mm for T(0)-T(1) and 0.52 mm for T(0)-T(2)). The mean registration error increased to 1.2 mm for the registration between the 3D photographs acquired at T(0) and T(L). The mean registration error for the reference-based method was 1.0 mm for T(0)-T(1), 1.1 mm for T(0)-T(2), and 1.5 mm for T(0) and T(L). The mean registration errors for the preprocessed photographs were even smaller (0.30 mm for T(0)-T(1), 0.42 mm for T(0)-T(2), and 1.2 mm for T(0) and T(L)). Furthermore, a strong correlation between the results of both software packages used for surface-based registration was found. The intra- and interobserver error for the reference-based registration method was found to be 1.2 and 1.0 mm, respectively. Surface-based registration is an accurate method to compare 3D photographs of the same individual at

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.

Central research registration at Technical University of Denmark (DTU)

DEFF Research Database (Denmark)

Sand, Ane Ahrenkiel

Some five years ago, DTU switched from decentralized research registration, where researchers entered their publications into the DTU research repository themselves to centralized research registration, whereby library staff upload academic publications to the repository on behalf...... up the registration team, the configuration of the repository platform (Pure), the registration workflow and last but not least the results since DTU switched to centralized research registration....

Central Research Registration at Technical University of Denmark (DTU)

DEFF Research Database (Denmark)

Sand, Ane Ahrenkiel

Some five years ago, DTU switched from decentralized research registration, where researchers entered their publications into the DTU research repository themselves to centralized research registration, whereby library staff upload academic publications to the repository on behalf...... up the registration team, the configuration of the repository platform (Pure), the registration workflow and last but not least the results since DTU switched to centralized research registration....

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

Fuels Registration, Reporting, and Compliance Help

Science.gov (United States)

Information about the requirements for registration and health effects testing of new fuels or fuel additives and mandatory registration for fuels reporting and about mandatory reporting forms for parties regulated under EPA fuel programs.

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...

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

The cadastral registration of the property right

Directory of Open Access Journals (Sweden)

D.-G. IONAȘ

2017-12-01

Full Text Available Real rights are subjective patrimonial rights which provide the holder with the right to directly exercise certain prerogatives over a determined good. Real rights over immobile goods, registered in the cadastral register are called tabular rights. Cadastral registration is that certain form of registration by which a real right over an immobile good is acquired, changed or ended, from the time de registration request is filed. At this time, registration in the cadastral register provides the opposability effect, as the constitutive effect is suspended until the cadastral works are finalized and new cadastral registers are created for each administrative unit.

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

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...

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.

Three dimensional image alignment, registration and fusion

International Nuclear Information System (INIS)

Treves, S.T.; Mitchell, K.D.; Habboush, I.H.

1998-01-01

Combined assessment of three dimensional anatomical and functional images (SPECT, PET, MRI, CT) is useful to determine the nature and extent of lesions in many parts of the body. Physicians principally rely on their spatial sense of mentally re-orient and overlap images obtained with different imaging modalities. Objective methods that enable easy and intuitive image registration can help the physician arrive at more optimal diagnoses and better treatment decisions. This review describes a simple, intuitive and robust image registration approach developed in our laboratory. It differs from most other registration techniques in that it allows the user to incorporate all of the available information within the images in the registration process. This method takes full advantage of the ability of knowledgeable operators to achieve image registration and fusion using an intuitive interactive visual approach. It can register images accurately and quickly without the use of elaborate mathematical modeling or optimization techniques. The method provides the operator with tools to manipulate images in three dimensions, including visual feedback techniques to assess the accuracy of registration (grids, overlays, masks, and fusion of images in different colors). Its application is not limited to brain imaging and can be applied to images from any region in the body. The overall effect is a registration algorithm that is easy to implement and can achieve accuracy on the order of one pixel

Sulcal set optimization for cortical surface registration.

Science.gov (United States)

Joshi, Anand A; Pantazis, Dimitrios; Li, Quanzheng; Damasio, Hanna; Shattuck, David W; Toga, Arthur W; Leahy, Richard M

2010-04-15

Flat mapping based cortical surface registration constrained by manually traced sulcal curves has been widely used for inter subject comparisons of neuroanatomical data. Even for an experienced neuroanatomist, manual sulcal tracing can be quite time consuming, with the cost increasing with the number of sulcal curves used for registration. We present a method for estimation of an optimal subset of size N(C) from N possible candidate sulcal curves that minimizes a mean squared error metric over all combinations of N(C) curves. The resulting procedure allows us to estimate a subset with a reduced number of curves to be traced as part of the registration procedure leading to optimal use of manual labeling effort for registration. To minimize the error metric we analyze the correlation structure of the errors in the sulcal curves by modeling them as a multivariate Gaussian distribution. For a given subset of sulci used as constraints in surface registration, the proposed model estimates registration error based on the correlation structure of the sulcal errors. The optimal subset of constraint curves consists of the N(C) sulci that jointly minimize the estimated error variance for the subset of unconstrained curves conditioned on the N(C) constraint curves. The optimal subsets of sulci are presented and the estimated and actual registration errors for these subsets are computed. Copyright 2009 Elsevier Inc. All rights reserved.

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.

Subspace-Based Holistic Registration for Low-Resolution Facial Images

Directory of Open Access Journals (Sweden)

Boom BJ

2010-01-01

Full Text Available Subspace-based holistic registration is introduced as an alternative to landmark-based face registration, which has a poor performance on low-resolution images, as obtained in camera surveillance applications. The proposed registration method finds the alignment by maximizing the similarity score between a probe and a gallery image. We use a novel probabilistic framework for both user-independent as well as user-specific face registration. The similarity is calculated using the probability that the face image is correctly aligned in a face subspace, but additionally we take the probability into account that the face is misaligned based on the residual error in the dimensions perpendicular to the face subspace. We perform extensive experiments on the FRGCv2 database to evaluate the impact that the face registration methods have on face recognition. Subspace-based holistic registration on low-resolution images can improve face recognition in comparison with landmark-based registration on high-resolution images. The performance of the tested face recognition methods after subspace-based holistic registration on a low-resolution version of the FRGC database is similar to that after manual registration.

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�

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.

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...

Language proficiency and nursing registration.

Science.gov (United States)

Müller, Amanda

2016-02-01

This discussion paper focuses on English proficiency standards for nursing registration in Australia, how Australia has dealt with the issue of language proficiency, and the factors which have led to the establishment of the current language standards. Also, this paper will provide a comparison of the two language tests that are currently accepted in Australia (OET and IELTS), including the appropriateness of these tests and the minimum standards used. The paper will also examine the use of educational background as an indicator of language proficiency. Finally, communication-based complaints in the post-registration environment will be explored, and some discussion will be provided about why pre-registration measures might have failed to prevent such problematic situations from occurring. Copyright © 2015 Elsevier Ltd. All rights reserved.

A registry for exposure and population health in the Altai region affected by fallout from the Semipalatinsk nuclear test site.

Science.gov (United States)

Shoikhet, Y N; Kiselev, V I; Zaitsev, E V; Kolyado, I B; Konovalov, B Y; Bauer, S; Grosche, B; Burkart, W

1999-09-01

A registry of the rural population in the Altai region exposed to fallout from nuclear tests at the Semipalatinsk test site (STS) was established more than four decades after the first Soviet nuclear explosion on August 29, 1949. Information about individuals living in an exposed and a control area was collected using all available local sources, such as kolkhoz documentation, school registries, medical treatment records and interviews with residents. As a result, a database comprising an exposed group of 39 179 individuals from 53 Altai region villages, 6769 external and 3303 internal controls was compiled. For several settlements, effective dose estimates reached the level of 1.5 Sv, while the average effective dose estimate in the exposed group was 340 mSv. Dosimetric data, vital status information and health records gathered at rayon and village medical facilities are held in the registry. Cause-of-death information for deceased residents is obtained from death registration forms archived at the Altai region vital statistics office. At present, a follow-up of approximately 40% of the population exposed in 1949 has been done. More will be added by searching for migrants to the larger towns of the Altai region, i.e. Barnaul, Rubtsovsk and Biisk. In order to assess the influence of radiation exposure, analytical studies with a case-control design for stomach and lung cancer are currently being prepared. The number of known cases is sufficient to detect an odds ratio of 1.5 at the 95% confidence level. Epidemiological studies in populations affected by fallout from STS may be equally important to the atomic bomb survivors' study for the direct quantification of radiation effects. The range of exposure rates experienced will extend the acute high-dose-rate findings from Hiroshima/Nagasaki towards acute and protracted lower exposures, which are more relevant for radiation protection issues.

A registry for exposure and population health in the Altai region affected by fallout from the Semipalatinsk nuclear test site

International Nuclear Information System (INIS)

Shoikhet, Ya.N.; Kiselev, V.I.; Zaitsev, E.V.; Kolyado, I.B.; Konovalov, B.Yu.; Bauer, S.; Grosche, B.; Burkart, W.

1999-01-01

A registry of the rural population in the Altai region exposed to fallout from nuclear tests at the Semipalatinsk test site (STS) was established more than four decades after the first Soviet nuclear explosion on August 29, 1949. Information about individuals living in an exposed and a control area was collected using all available local sources, such as kolkhoz documentation, school registries, medical treatment records and interviews with residents. As a result, a database comprising an exposed group of 39 179 individuals from 53 Altai region villages, 6769 external and 3303 internal controls was compiled. For several settlements, effective dose estimates reached the level of 1.5 Sv, while the average effective dose estimate in the exposed group was 340 mSv. Dosimetric data, vital status information and health records gathered at rayon and village medical facilities are held in the registry. Cause-of-death information for deceased residents is obtained from death registration forms archived at the Altai region vital statistics office. At present, a follow-up of approximately 40% of the population exposed in 1949 has been done. More will be added by searching for migrants to the larger towns of the Altai region, i.e. Barnaul, Rubtsovsk and Biisk. In order to assess the influence of radiation exposure, analytical studies with a case-control design for stomach and lung cancer are currently being prepared. The number of known cases is sufficient to detect an odds ratio of 1.5 at the 95% confidence level. Epidemiological studies in populations affected by fallout from STS may be equally important to the atomic bomb survivors' study for the direct quantification of radiation effects. The range of exposure rates experienced will extend the acute high-dose-rate findings from Hiroshima/Nagasaki towards acute and protracted lower exposures, which are more relevant for radiation protection issues. (orig.)

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...

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...

Overlay improvement by exposure map based mask registration optimization

Science.gov (United States)

Shi, Irene; Guo, Eric; Chen, Ming; Lu, Max; Li, Gordon; Li, Rivan; Tian, Eric

2015-03-01

Along with the increased miniaturization of semiconductor electronic devices, the design rules of advanced semiconductor devices shrink dramatically. [1] One of the main challenges of lithography step is the layer-to-layer overlay control. Furthermore, DPT (Double Patterning Technology) has been adapted for the advanced technology node like 28nm and 14nm, corresponding overlay budget becomes even tighter. [2][3] After the in-die mask registration (pattern placement) measurement is introduced, with the model analysis of a KLA SOV (sources of variation) tool, it's observed that registration difference between masks is a significant error source of wafer layer-to-layer overlay at 28nm process. [4][5] Mask registration optimization would highly improve wafer overlay performance accordingly. It was reported that a laser based registration control (RegC) process could be applied after the pattern generation or after pellicle mounting and allowed fine tuning of the mask registration. [6] In this paper we propose a novel method of mask registration correction, which can be applied before mask writing based on mask exposure map, considering the factors of mask chip layout, writing sequence, and pattern density distribution. Our experiment data show if pattern density on the mask keeps at a low level, in-die mask registration residue error in 3sigma could be always under 5nm whatever blank type and related writer POSCOR (position correction) file was applied; it proves random error induced by material or equipment would occupy relatively fixed error budget as an error source of mask registration. On the real production, comparing the mask registration difference through critical production layers, it could be revealed that registration residue error of line space layers with higher pattern density is always much larger than the one of contact hole layers with lower pattern density. Additionally, the mask registration difference between layers with similar pattern density

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.

48 CFR 52.204-7 - Central Contractor Registration.

Science.gov (United States)

2010-10-01

... 48 Federal Acquisition Regulations System 2 2010-10-01 2010-10-01 false Central Contractor....204-7 Central Contractor Registration. As prescribed in 4.1105, use the following clause: Central Contractor Registration (APR 2008) (a) Definitions. As used in this clause— Central Contractor Registration...

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.

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

Surface-to-surface registration using level sets

DEFF Research Database (Denmark)

Hansen, Mads Fogtmann; Erbou, Søren G.; Vester-Christensen, Martin

2007-01-01

This paper presents a general approach for surface-to-surface registration (S2SR) with the Euclidean metric using signed distance maps. In addition, the method is symmetric such that the registration of a shape A to a shape B is identical to the registration of the shape B to the shape A. The S2SR...... problem can be approximated by the image registration (IR) problem of the signed distance maps (SDMs) of the surfaces confined to some narrow band. By shrinking the narrow bands around the zero level sets the solution to the IR problem converges towards the S2SR problem. It is our hypothesis...... that this approach is more robust and less prone to fall into local minima than ordinary surface-to-surface registration. The IR problem is solved using the inverse compositional algorithm. In this paper, a set of 40 pelvic bones of Duroc pigs are registered to each other w.r.t. the Euclidean transformation...

Changes in autopsy rates among cancer patients and their impact on cancer statistics from a public health point of view: a longitudinal study from 1980 to 2010 with data from Cancer Registry Zurich.

Science.gov (United States)

Bieri, Uwe; Moch, Holger; Dehler, Silvia; Korol, Dimitri; Rohrmann, Sabine

2015-06-01

During the last decades, autopsy rates have dramatically decreased in many countries. The Cancer Registry Zurich, which exists since 1980, provides the opportunity to address to what extent the number of autopsies in cancer patients has changed over a longer period of time and how often autopsies provide a diagnosis of clinically undetected cancer. Data from the Cancer Registry Zurich consisting of 102,434 cancer cases among 89,933 deceased patients between 1980 and 2010 were analyzed by means of descriptive statistics. The autopsy rate declined from 60 % in 1980 to 7 % in 2010. The total number of autopsies performed decreased from 1179 in 1986 to 220 in 2010. Furthermore, there was also a decline in the rate of newly detected tumours based on autopsy information. In 1980, the rate of newly detected tumours through autopsy was 42 % compared with 2010, when the rate had declined to 17 %. A consequence of the reduced autopsy rate is the reduction of incidental findings at autopsy in cancer registration. However, this reduction has not negatively affected the total incidence of cancer. It seems that the state-of-the-art diagnostic tools used for tumour detection are sufficiently reliable, allowing the scientific community to trust the quality of data provided by cancer registries in spite of decreasing autopsy rates.

Contacts in the Office of Pesticide Programs, Registration Division

Science.gov (United States)

The Registration Division (RD) is responsible product registrations, amendments, registrations, tolerances, experimental use permits, and emergency exemptions for conventional chemical pesticides. Find contacts in this division.

Automatic intra-modality brain image registration method

International Nuclear Information System (INIS)

Whitaker, J.M.; Ardekani, B.A.; Braun, M.

1996-01-01

Full text: Registration of 3D images of brain of the same or different subjects has potential importance in clinical diagnosis, treatment planning and neurological research. The broad aim of our work is to produce an automatic and robust intra-modality, brain image registration algorithm for intra-subject and inter-subject studies. Our algorithm is composed of two stages. Initial alignment is achieved by finding the values of nine transformation parameters (representing translation, rotation and scale) that minimise the nonoverlapping regions of the head. This is achieved by minimisation of the sum of the exclusive OR of two binary head images, produced using the head extraction procedure described by Ardekani et al. (J Comput Assist Tomogr, 19:613-623, 1995). The initial alignment successfully determines the scale parameters and gross translation and rotation parameters. Fine alignment uses an objective function described for inter-modality registration in Ardekani et al. (ibid.). The algorithm segments one of the images to be aligned into a set of connected components using K-means clustering. Registration is achieved by minimising the K-means variance of the segmentation induced in the other image. Similarity of images of the same modality makes the method attractive for intra-modality registration. A 3D MR image, with voxel dimensions, 2x2x6 mm, was misaligned. The registered image shows visually accurate registration. The average displacement of a pixel from its correct location was measured to be 3.3 mm. The algorithm was tested on intra-subject MR images and was found to produce good qualitative results. Using the data available, the algorithm produced promising qualitative results in intra-subject registration. Further work is necessary in its application to intersubject registration, due to large variability in brain structure between subjects. Clinical evaluation of the algorithm for selected applications is required

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....

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

DEFF Research Database (Denmark)

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

2016-01-01

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

AÇÃO CIVIL PÚBLICA SOBRE ÁREA DE RESERVA LEGAL: (DESNECESSIDADE DO SEU REGISTRO NA MATRÍCULA DO IMÓVEL / CIVIL ACTION PUBLIC ON AREA OF LEGAL NATURE RESERVES: (NO NEED OF ITS REGISTRY IN THE PROPERTY RECORD

Directory of Open Access Journals (Sweden)

Carlos José Cordeiro

2016-04-01

Full Text Available It is aimed to show our position on the (no need of the civil action filing the record in property, subject of the registration of the demand that is intended to be obliged to institute legal nature reserve area, making use, therefore, of the adoption of hypothetical deductive method, combined with the execution of theoretical and documentary research. Legal Nature Reserve is understood as the area of rural land that can not suffer human intervention by deforestation and exploitation of its resources. Its institution and subsequent registration with the Rural Environmental Registry is an propter rem obligation, given the tracking of it and the attachment to the holder of real right. It must be obeyed even that forests or other type of vegetation no longer exist in the property, which thus externalizes its institution being a mandatory requirement for regular registration of the property, making it impossible to any claim of its ignorance, because it clings to the ownership of the property, passing to new owners, they being able to be charged regardless of their proceeding.

A prospective comparison between auto-registration and manual registration of real-time ultrasound with MR images for percutaneous ablation or biopsy of hepatic lesions.

Science.gov (United States)

Cha, Dong Ik; Lee, Min Woo; Song, Kyoung Doo; Oh, Young-Taek; Jeong, Ja-Yeon; Chang, Jung-Woo; Ryu, Jiwon; Lee, Kyong Joon; Kim, Jaeil; Bang, Won-Chul; Shin, Dong Kuk; Choi, Sung Jin; Koh, Dalkwon; Seo, Bong Koo; Kim, Kyunga

2017-06-01

To compare the accuracy and required time for image fusion of real-time ultrasound (US) with pre-procedural magnetic resonance (MR) images between positioning auto-registration and manual registration for percutaneous radiofrequency ablation or biopsy of hepatic lesions. This prospective study was approved by the institutional review board, and all patients gave written informed consent. Twenty-two patients (male/female, n = 18/n = 4; age, 61.0 ± 7.7 years) who were referred for planning US to assess the feasibility of radiofrequency ablation (n = 21) or biopsy (n = 1) for focal hepatic lesions were included. One experienced radiologist performed the two types of image fusion methods in each patient. The performance of auto-registration and manual registration was evaluated. The accuracy of the two methods, based on measuring registration error, and the time required for image fusion for both methods were recorded using in-house software and respectively compared using the Wilcoxon signed rank test. Image fusion was successful in all patients. The registration error was not significantly different between the two methods (auto-registration: median, 3.75 mm; range, 1.0-15.8 mm vs. manual registration: median, 2.95 mm; range, 1.2-12.5 mm, p = 0.242). The time required for image fusion was significantly shorter with auto-registration than with manual registration (median, 28.5 s; range, 18-47 s, vs. median, 36.5 s; range, 14-105 s, p = 0.026). Positioning auto-registration showed promising results compared with manual registration, with similar accuracy and even shorter registration time.

High performance deformable image registration algorithms for manycore processors

CERN Document Server

Shackleford, James; Sharp, Gregory

2013-01-01

High Performance Deformable Image Registration Algorithms for Manycore Processors develops highly data-parallel image registration algorithms suitable for use on modern multi-core architectures, including graphics processing units (GPUs). Focusing on deformable registration, we show how to develop data-parallel versions of the registration algorithm suitable for execution on the GPU. Image registration is the process of aligning two or more images into a common coordinate frame and is a fundamental step to be able to compare or fuse data obtained from different sensor measurements. E

Information Architecture for Perinatal Registration in the Netherlands.

Science.gov (United States)

Goossen, William T F; Arns-Schiere, Anne Marieke

In the Netherlands, the perinatal registry has undergone significant changes in the past decades. The purpose of this article is to describe the current health care information architecture for the national perinatal registry, including how the national data set is arranged and how electronic messages are used to submit data. We provide implications for women's health care providers based on the creation and implementation of the Dutch perinatal registry system. Copyright © 2017 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.

Visitor Registration System

Data.gov (United States)

US Agency for International Development — Visitor Registration System (VRS) streamlines visitor check-in and check-out process for expediting visitors into USAID. The system captures visitor information...

Positive predictive value and completeness of prenatally assigned International Classification of Disease-10 kidney anomaly diagnoses in the Danish National Patient Registry

Directory of Open Access Journals (Sweden)

Rasmussen M

2016-01-01

Full Text Available Maria Rasmussen,1 Morten Smærup Olsen,2 Lone Sunde,1,3 Lars Pedersen,2 Olav Bjørn Petersen4 1Department of Clinical Genetics, Aarhus University Hospital, Skejby, 2Department of Clinical Epidemiology, Aarhus University Hospital, Skejby, 3Department of Biomedicine, Aarhus University, Aarhus, 4Department of Gynecology and Obstetrics, Aarhus University Hospital, Skejby, Denmark Objective: Restricting studies of severe congenital malformations to live-born children may introduce substantial bias. In this study, we estimated the attendance to the second-trimester fetal malformation screening program. We also estimated the positive predictive value (PPV of prenatally assigned International Classification of Disease-10 diagnoses recorded in the Danish National Patient Registry (DNPR and the completeness of case registration. We used kidney anomalies as an example. Methods: We identified the proportion of all Danish live-born children from January 1, 2007 to December 31, 2012, who were scanned during the second trimester using the DNPR and the Civil Registration System. Details of all fetuses with specific kidney anomaly diagnoses according to the DNPR were retrieved. The PPV was estimated using the nationwide Astraia database of pregnancy medical charts or traditional medical charts, as gold standard. The completeness was assessed using the total number of cases estimated by the capture–recapture method. Results: Of 372,263 live born infants, 97.3% were scanned during the second trimester. We identified 172 fetuses in the DNPR. Of these, 149 had kidney anomalies according to Astraia or medical chart review, corresponding to a PPV of 87% (95% CI: 81%–91%. The estimated completeness was 43% (95% CI: 38%–49% for the DNPR and 75% (95% CI: 70%–79% for Astraia. Conclusion: Almost all live-born children were scanned during the second trimester in Denmark. However, low completeness may hamper the use of the DNPR for studies of prenatally detected

12 CFR 998.2 - Registration and periodic disclosures.

Science.gov (United States)

2010-01-01

... 12 Banks and Banking 7 2010-01-01 2010-01-01 false Registration and periodic disclosures. 998.2 Section 998.2 Banks and Banking FEDERAL HOUSING FINANCE BOARD FEDERAL HOME LOAN BANK DISCLOSURES REGISTRATION OF FEDERAL HOME LOAN BANK EQUITY SECURITIES § 998.2 Registration and periodic disclosures. (a...

17 CFR 31.6 - Registration of leverage commodities.

Science.gov (United States)

2010-04-01

... taking delivery to buy or sell the leverage commodity; (2) Explain the effect of such changes upon the... 17 Commodity and Securities Exchanges 1 2010-04-01 2010-04-01 false Registration of leverage... LEVERAGE TRANSACTIONS § 31.6 Registration of leverage commodities. (a) Registration of leverage commodities...

Transparency of outcome reporting and trial registration of randomized controlled trials in top psychosomatic and behavioral health journals: A systematic review.

Science.gov (United States)

Milette, Katherine; Roseman, Michelle; Thombs, Brett D

2011-03-01

The most reliable evidence for evaluating healthcare interventions comes from well-designed and conducted randomized controlled trials (RCTs). The extent to which published RCTs reflect the efficacy of interventions, however, depends on the completeness and accuracy of published results. The Consolidated Standards of Reporting Trials statement, initially developed in 1996, provides guidelines intended to improve the transparency of published RCT reports. A policy of the International Committee of Medical Journal Editors, initiated in 2005, requires clinical trials published in member journals to be registered in publicly accessible registries prior to patient enrollment. The objective of this study was to assess the clarity of outcome reporting, proportion of registered trials, and adequacy of outcome registration in RCTs published in top behavioral health journals. Eligible studies were primary or secondary reports of RCTs published in Annals of Behavioral Medicine, Health Psychology, Journal of Psychosomatic Research, and Psychosomatic Medicine from January 2008 to September 2009. Data were extracted for each study on adequacy of outcome reporting and registration. Of 63 articles reviewed, only 25 (39.7%) had adequately declared primary or secondary outcomes, whereas 38 (60.3%) had multiple primary outcomes or did not define outcomes. Only 13 studies (20.6%) were registered. Only 1 study registered sufficiently precise outcome information to compare with published outcomes, and registered and published outcomes were discrepant in that study. Greater attention to outcome reporting and trial registration by researchers, peer reviewers, and journal editors will increase the likelihood that effective behavioral health interventions are readily identified and made available to patients. Copyright © 2011 Elsevier Inc. All rights reserved.

40 CFR 152.99 - Petitions to cancel registration.

Science.gov (United States)

2010-07-01

... 40 Protection of Environment 23 2010-07-01 2010-07-01 false Petitions to cancel registration. 152... Submitters' Rights § 152.99 Petitions to cancel registration. An original data submitter may petition the Agency to deny or cancel the registration of a product in accordance with this section if he has...

49 CFR 107.503 - Registration statement.

Science.gov (United States)

2010-10-01

... tank motor vehicles which the registrant intends to manufacture, assemble, repair, inspect, test or... this section, each person who repairs a cargo tank or cargo tank motor vehicle must submit a copy of... PROGRAM PROCEDURES Registration of Cargo Tank and Cargo Tank Motor Vehicle Manufacturers, Assemblers...

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....

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.

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.

The major age as a requirement for the registral rectification of sex and the name: a question of fundamental rights

Directory of Open Access Journals (Sweden)

Juan Manuel Sánchez Freyre

2018-04-01

Full Text Available Constitutional transcendence of the requirement of majority for the recognition of the right to sexual identity and the change in the registration of sex in the Civil Registry in the case of transsexual people and their incardination in the limitations to the capacity to act Minors. Diversity of legal treatment of the age and its legislative and jurisprudential treatment in attention to the progressive acquisition of discernment and ability to understand and to issue its will in the best interest of the minor. The principle of the best interest of the child as a frame of reference to analyze each specific case in defense of fundamental rights in general and its concretion in the case of minors. The difficulty of assessing this indeterminate legal concept.

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.

32 CFR 636.9 - Registration requirement.

Science.gov (United States)

2010-07-01

... 32 National Defense 4 2010-07-01 2010-07-01 true Registration requirement. 636.9 Section 636.9 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS MOTOR VEHICLE TRAFFIC SUPERVISION (SPECIFIC INSTALLATIONS) Fort Stewart, Georgia § 636.9 Registration requirement. In...

Fast fluid registration of medical images

DEFF Research Database (Denmark)

Bro-Nielsen, Morten; Gramkow, Claus

1996-01-01

This paper offers a new fast algorithm for non-rigid viscous fluid registration of medical images that is at least an order of magnitude faster than the previous method by (Christensen et al., 1994). The core algorithm in the fluid registration method is based on a linear elastic deformation...

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 ...

Geometric registration of remotely sensed data with SAMIR

Science.gov (United States)

Gianinetto, Marco; Barazzetti, Luigi; Dini, Luigi; Fusiello, Andrea; Toldo, Roberto

2015-06-01

The commercial market offers several software packages for the registration of remotely sensed data through standard one-to-one image matching. Although very rapid and simple, this strategy does not take into consideration all the interconnections among the images of a multi-temporal data set. This paper presents a new scientific software, called Satellite Automatic Multi-Image Registration (SAMIR), able to extend the traditional registration approach towards multi-image global processing. Tests carried out with high-resolution optical (IKONOS) and high-resolution radar (COSMO-SkyMed) data showed that SAMIR can improve the registration phase with a more rigorous and robust workflow without initial approximations, user's interaction or limitation in spatial/spectral data size. The validation highlighted a sub-pixel accuracy in image co-registration for the considered imaging technologies, including optical and radar imagery.

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.

27 CFR 25.112 - Dealer registration.

Science.gov (United States)

2010-04-01

.... Every brewer who sells, or offers for sale, any alcohol product (distilled spirits, wines, or beer) fit... registration. Registration covers all sales from the same location, including sales of wine, spirits, or other... for making sales of wine or beer at the customer's place of business. Otherwise, a brewer who conducts...

Tenure Security Reformand Electronic Registration: Exploring ...

African Journals Online (AJOL)

This paper examines the potential significance of updating registration practices in resolving some of the issues about tenure security in a transformative context. It deals with the importance of good governance in the context of land administration and considers its impact on intended reforms. Land registration practice as an ...

19 CFR 360.102 - Online registration.

Science.gov (United States)

2010-04-01

... 19 Customs Duties 3 2010-04-01 2010-04-01 false Online registration. 360.102 Section 360.102... ANALYSIS SYSTEM § 360.102 Online registration. (a) In general. (1) Any importer, importing company, customs.... boxes will not be accepted. A user identification number will be issued within two business days...

Survey of Non-Rigid Registration Tools in Medicine.

Science.gov (United States)

Keszei, András P; Berkels, Benjamin; Deserno, Thomas M

2017-02-01

We catalogue available software solutions for non-rigid image registration to support scientists in selecting suitable tools for specific medical registration purposes. Registration tools were identified using non-systematic search in Pubmed, Web of Science, IEEE Xplore® Digital Library, Google Scholar, and through references in identified sources (n = 22). Exclusions are due to unavailability or inappropriateness. The remaining (n = 18) tools were classified by (i) access and technology, (ii) interfaces and application, (iii) living community, (iv) supported file formats, and (v) types of registration methodologies emphasizing the similarity measures implemented. Out of the 18 tools, (i) 12 are open source, 8 are released under a permissive free license, which imposes the least restrictions on the use and further development of the tool, 8 provide graphical processing unit (GPU) support; (ii) 7 are built on software platforms, 5 were developed for brain image registration; (iii) 6 are under active development but only 3 have had their last update in 2015 or 2016; (iv) 16 support the Analyze format, while 7 file formats can be read with only one of the tools; and (v) 6 provide multiple registration methods and 6 provide landmark-based registration methods. Based on open source, licensing, GPU support, active community, several file formats, algorithms, and similarity measures, the tools Elastics and Plastimatch are chosen for the platform ITK and without platform requirements, respectively. Researchers in medical image analysis already have a large choice of registration tools freely available. However, the most recently published algorithms may not be included in the tools, yet.

Wavelet based free-form deformations for nonrigid registration

Science.gov (United States)

Sun, Wei; Niessen, Wiro J.; Klein, Stefan

2014-03-01

In nonrigid registration, deformations may take place on the coarse and fine scales. For the conventional B-splines based free-form deformation (FFD) registration, these coarse- and fine-scale deformations are all represented by basis functions of a single scale. Meanwhile, wavelets have been proposed as a signal representation suitable for multi-scale problems. Wavelet analysis leads to a unique decomposition of a signal into its coarse- and fine-scale components. Potentially, this could therefore be useful for image registration. In this work, we investigate whether a wavelet-based FFD model has advantages for nonrigid image registration. We use a B-splines based wavelet, as defined by Cai and Wang.1 This wavelet is expressed as a linear combination of B-spline basis functions. Derived from the original B-spline function, this wavelet is smooth, differentiable, and compactly supported. The basis functions of this wavelet are orthogonal across scales in Sobolev space. This wavelet was previously used for registration in computer vision, in 2D optical flow problems,2 but it was not compared with the conventional B-spline FFD in medical image registration problems. An advantage of choosing this B-splines based wavelet model is that the space of allowable deformation is exactly equivalent to that of the traditional B-spline. The wavelet transformation is essentially a (linear) reparameterization of the B-spline transformation model. Experiments on 10 CT lung and 18 T1-weighted MRI brain datasets show that wavelet based registration leads to smoother deformation fields than traditional B-splines based registration, while achieving better accuracy.

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.

Efficient Variational Approaches for Deformable Registration of Images

Directory of Open Access Journals (Sweden)

Mehmet Ali Akinlar

2012-01-01

Full Text Available Dirichlet, anisotropic, and Huber regularization terms are presented for efficient registration of deformable images. Image registration, an ill-posed optimization problem, is solved using a gradient-descent-based method and some fundamental theorems in calculus of variations. Euler-Lagrange equations with homogeneous Neumann boundary conditions are obtained. These equations are discretized by multigrid and finite difference numerical techniques. The method is applied to the registration of brain MR images of size 65×65. Computational results indicate that the presented method is quite fast and efficient in the registration of deformable medical images.

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...

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.

21 CFR 1309.45 - Extension of registration pending final order.

Science.gov (United States)

2010-04-01

... 21 Food and Drugs 9 2010-04-01 2010-04-01 false Extension of registration pending final order. 1309.45 Section 1309.45 Food and Drugs DRUG ENFORCEMENT ADMINISTRATION, DEPARTMENT OF JUSTICE... for Registration: Revocation Or Suspension of Registration § 1309.45 Extension of registration pending...

32 CFR 636.8 - Registration policy.

Science.gov (United States)

2010-07-01

... 32 National Defense 4 2010-07-01 2010-07-01 true Registration policy. 636.8 Section 636.8 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS MOTOR VEHICLE TRAFFIC SUPERVISION (SPECIFIC INSTALLATIONS) Fort Stewart, Georgia § 636.8 Registration policy. In addition to th...

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.

Real-time CT-video registration for continuous endoscopic guidance

Science.gov (United States)

Merritt, Scott A.; Rai, Lav; Higgins, William E.

2006-03-01

Previous research has shown that CT-image-based guidance could be useful for the bronchoscopic assessment of lung cancer. This research drew upon the registration of bronchoscopic video images to CT-based endoluminal renderings of the airway tree. The proposed methods either were restricted to discrete single-frame registration, which took several seconds to complete, or required non-real-time buffering and processing of video sequences. We have devised a fast 2D/3D image registration method that performs single-frame CT-Video registration in under 1/15th of a second. This allows the method to be used for real-time registration at full video frame rates without significantly altering the physician's behavior. The method achieves its speed through a gradient-based optimization method that allows most of the computation to be performed off-line. During live registration, the optimization iteratively steps toward the locally optimal viewpoint at which a CT-based endoluminal view is most similar to a current bronchoscopic video frame. After an initial registration to begin the process (generally done in the trachea for bronchoscopy), subsequent registrations are performed in real-time on each incoming video frame. As each new bronchoscopic video frame becomes available, the current optimization is initialized using the previous frame's optimization result, allowing continuous guidance to proceed without manual re-initialization. Tests were performed using both synthetic and pre-recorded bronchoscopic video. The results show that the method is robust to initialization errors, that registration accuracy is high, and that continuous registration can proceed on real-time video at >15 frames per sec. with minimal user-intervention.

elastix: a toolbox for intensity-based medical image registration.

Science.gov (United States)

Klein, Stefan; Staring, Marius; Murphy, Keelin; Viergever, Max A; Pluim, Josien P W

2010-01-01

Medical image registration is an important task in medical image processing. It refers to the process of aligning data sets, possibly from different modalities (e.g., magnetic resonance and computed tomography), different time points (e.g., follow-up scans), and/or different subjects (in case of population studies). A large number of methods for image registration are described in the literature. Unfortunately, there is not one method that works for all applications. We have therefore developed elastix, a publicly available computer program for intensity-based medical image registration. The software consists of a collection of algorithms that are commonly used to solve medical image registration problems. The modular design of elastix allows the user to quickly configure, test, and compare different registration methods for a specific application. The command-line interface enables automated processing of large numbers of data sets, by means of scripting. The usage of elastix for comparing different registration methods is illustrated with three example experiments, in which individual components of the registration method are varied.

COMPARISON OF VOLUMETRIC REGISTRATION ALGORITHMS FOR TENSOR-BASED MORPHOMETRY.

Science.gov (United States)

Villalon, Julio; Joshi, Anand A; Toga, Arthur W; Thompson, Paul M

2011-01-01

Nonlinear registration of brain MRI scans is often used to quantify morphological differences associated with disease or genetic factors. Recently, surface-guided fully 3D volumetric registrations have been developed that combine intensity-guided volume registrations with cortical surface constraints. In this paper, we compare one such algorithm to two popular high-dimensional volumetric registration methods: large-deformation viscous fluid registration, formulated in a Riemannian framework, and the diffeomorphic "Demons" algorithm. We performed an objective morphometric comparison, by using a large MRI dataset from 340 young adult twin subjects to examine 3D patterns of correlations in anatomical volumes. Surface-constrained volume registration gave greater effect sizes for detecting morphometric associations near the cortex, while the other two approaches gave greater effects sizes subcortically. These findings suggest novel ways to combine the advantages of multiple methods in the future.

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.

Study of national registration systems for health records of radiation workers. National radiation dose registration system

International Nuclear Information System (INIS)

Nakagawa, Haruo; Kanda, Keiji

1999-01-01

A national radiation dose registration system is proposed in this paper. In Japan, only one radiation dose registration system is partly effective. It is applied for workers in nuclear power plants which are under control of regulatory laws for nuclear reactors. The total system was proposed previously by the Committee for Compensation Claims of Nuclear Accidents. The reason for the delay in establishing a registration system for all radiation workers is supposedly a lack of effort to adjust differences among items in radiation protection laws and the promotion of public acceptance to atomic power. Items about dose recordings, record keeping and dose-record reporting in all of the radiation regulatory laws are compared to each other, and items were extracted for revision. (author)

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.

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.

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).

Socioeconomic determinants of accessibility to birth registration in Lao PDR.

Science.gov (United States)

Nomura, Marika; Xangsayarath, Phonepadith; Takahashi, Kenzo; Kamiya, Yusuke; Siengsounthone, Latsamy; Ogino, Hina; Kobayashi, Jun

2018-01-08

The global coverage rate of birth registration is only around 65% for the population of children under five although birth registration secures protection and access to health services that are fundamental rights for all babies. This study aimed to perform a basic analysis of the accessibility to birth registration to better understand how to improve the birth registration system in the Lao PDR. For the analysis of birth registration and related socioeconomic factors, 9576 mother-child pairs were chosen from the data set of The Lao Social Indicator Survey 2011-12. After bivariate analysis with statistical tests including the chi-square test were conducted, logistic regression was performed to determine the variables that statistically influence accessibility to birth registration. Ethno-geographic factors and place of delivery were observed to be the factors associated with birth registration in this analysis. Many mothers in the Lao PDR deliver in their local communities. Therefore, capacity development of various human resources, such as Skilled Birth Attendant, to support the local administrative procedure of birth registration in their communities could be one option to overcoming the bottlenecks in the birth registration process in the Lao PDR.

Evaluation of the use of registration stickers.

Science.gov (United States)

2011-04-01

This research evaluated the potential costs and benefits of doing away with license plate registration stickers as part : of the registration renewal process for Pennsylvania. The research consisted of a comprehensive literature review, a : survey of...

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.

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

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...

Deformable image registration using convolutional neural networks

Science.gov (United States)

Eppenhof, Koen A. J.; Lafarge, Maxime W.; Moeskops, Pim; Veta, Mitko; Pluim, Josien P. W.

2018-03-01

Deformable image registration can be time-consuming and often needs extensive parameterization to perform well on a specific application. We present a step towards a registration framework based on a three-dimensional convolutional neural network. The network directly learns transformations between pairs of three-dimensional images. The outputs of the network are three maps for the x, y, and z components of a thin plate spline transformation grid. The network is trained on synthetic random transformations, which are applied to a small set of representative images for the desired application. Training therefore does not require manually annotated ground truth deformation information. The methodology is demonstrated on public data sets of inspiration-expiration lung CT image pairs, which come with annotated corresponding landmarks for evaluation of the registration accuracy. Advantages of this methodology are its fast registration times and its minimal parameterization.

Behaviors study of image registration algorithms in image guided radiation therapy

International Nuclear Information System (INIS)

Zou Lian; Hou Qing

2008-01-01

Objective: Study the behaviors of image registration algorithms, and analyze the elements which influence the performance of image registrations. Methods: Pre-known corresponding coordinates were appointed for reference image and moving image, and then the influence of region of interest (ROI) selection, transformation function initial parameters and coupled parameter spaces on registration results were studied with a software platform developed in home. Results: Region of interest selection had a manifest influence on registration performance. An improperly chosen ROI resulted in a bad registration. Transformation function initial parameters selection based on pre-known information could improve the accuracy of image registration. Coupled parameter spaces would enhance the dependence of image registration algorithm on ROI selection. Conclusions: It is necessary for clinic IGRT to obtain a ROI selection strategy (depending on specific commercial software) correlated to tumor sites. Three suggestions for image registration technique developers are automatic selection of the initial parameters of transformation function based on pre-known information, developing specific image registration algorithm for specific image feature, and assembling real-time image registration algorithms according to tumor sites selected by software user. (authors)

Avoiding Stair-Step Artifacts in Image Registration for GOES-R Navigation and Registration Assessment

Science.gov (United States)

Grycewicz, Thomas J.; Tan, Bin; Isaacson, Peter J.; De Luccia, Frank J.; Dellomo, John

2016-01-01

In developing software for independent verification and validation (IVV) of the Image Navigation and Registration (INR) capability for the Geostationary Operational Environmental Satellite R Series (GOES-R) Advanced Baseline Imager (ABI), we have encountered an image registration artifact which limits the accuracy of image offset estimation at the subpixel scale using image correlation. Where the two images to be registered have the same pixel size, subpixel image registration preferentially selects registration values where the image pixel boundaries are close to lined up. Because of the shape of a curve plotting input displacement to estimated offset, we call this a stair-step artifact. When one image is at a higher resolution than the other, the stair-step artifact is minimized by correlating at the higher resolution. For validating ABI image navigation, GOES-R images are correlated with Landsat-based ground truth maps. To create the ground truth map, the Landsat image is first transformed to the perspective seen from the GOES-R satellite, and then is scaled to an appropriate pixel size. Minimizing processing time motivates choosing the map pixels to be the same size as the GOES-R pixels. At this pixel size image processing of the shift estimate is efficient, but the stair-step artifact is present. If the map pixel is very small, stair-step is not a problem, but image correlation is computation-intensive. This paper describes simulation-based selection of the scale for truth maps for registering GOES-R ABI images.

Intensity-based hierarchical elastic registration using approximating splines.

Science.gov (United States)

Serifovic-Trbalic, Amira; Demirovic, Damir; Cattin, Philippe C

2014-01-01

We introduce a new hierarchical approach for elastic medical image registration using approximating splines. In order to obtain the dense deformation field, we employ Gaussian elastic body splines (GEBS) that incorporate anisotropic landmark errors and rotation information. Since the GEBS approach is based on a physical model in form of analytical solutions of the Navier equation, it can very well cope with the local as well as global deformations present in the images by varying the standard deviation of the Gaussian forces. The proposed GEBS approximating model is integrated into the elastic hierarchical image registration framework, which decomposes a nonrigid registration problem into numerous local rigid transformations. The approximating GEBS registration scheme incorporates anisotropic landmark errors as well as rotation information. The anisotropic landmark localization uncertainties can be estimated directly from the image data, and in this case, they represent the minimal stochastic localization error, i.e., the Cramér-Rao bound. The rotation information of each landmark obtained from the hierarchical procedure is transposed in an additional angular landmark, doubling the number of landmarks in the GEBS model. The modified hierarchical registration using the approximating GEBS model is applied to register 161 image pairs from a digital mammogram database. The obtained results are very encouraging, and the proposed approach significantly improved all registrations comparing the mean-square error in relation to approximating TPS with the rotation information. On artificially deformed breast images, the newly proposed method performed better than the state-of-the-art registration algorithm introduced by Rueckert et al. (IEEE Trans Med Imaging 18:712-721, 1999). The average error per breast tissue pixel was less than 2.23 pixels compared to 2.46 pixels for Rueckert's method. The proposed hierarchical elastic image registration approach incorporates the GEBS

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

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

Registration accuracy and quality of real-life images.

Directory of Open Access Journals (Sweden)

Wei-Yen Hsu

Full Text Available BACKGROUND: A common registration problem for the application of consumer device is to align all the acquired image sequences into a complete scene. Image alignment requires a registration algorithm that will compensate as much as possible for geometric variability among images. However, images captured views from a real scene usually produce different distortions. Some are derived from the optic characteristics of image sensors, and others are caused by the specific scenes and objects. METHODOLOGY/PRINCIPAL FINDINGS: An image registration algorithm considering the perspective projection is proposed for the application of consumer devices in this study. It exploits a multiresolution wavelet-based method to extract significant features. An analytic differential approach is then proposed to achieve fast convergence of point matching. Finally, the registration accuracy is further refined to obtain subpixel precision by a feature-based modified Levenberg-Marquardt method. Due to its feature-based and nonlinear characteristic, it converges considerably faster than most other methods. In addition, vignette compensation and color difference adjustment are also performed to further improve the quality of registration results. CONCLUSIONS/SIGNIFICANCE: The performance of the proposed method is evaluated by testing the synthetic and real images acquired by a hand-held digital still camera and in comparison with two registration techniques in terms of the squared sum of intensity differences (SSD and correlation coefficient (CC. The results indicate that the proposed method is promising in registration accuracy and quality, which are statistically significantly better than other two approaches.

Deformable image registration using convolutional neural networks

NARCIS (Netherlands)

Eppenhof, Koen A.J.; Lafarge, Maxime W.; Moeskops, Pim; Veta, Mitko; Pluim, Josien P.W.

2018-01-01

Deformable image registration can be time-consuming and often needs extensive parameterization to perform well on a specific application. We present a step towards a registration framework based on a three-dimensional convolutional neural network. The network directly learns transformations between

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...

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.

Incidence of pancreatic cancer in Denmark

DEFF Research Database (Denmark)

Weble, Tanja Cruusberg; Bjerregaard, Jon Kroll; Kissmeyer, Peter

2017-01-01

BACKGROUND: The aim of this study was to monitor the evolution of the incidence of pancreatic cancer in Denmark over 70 years. We also compared registrations of pancreatic cancer in a nationwide population-based database, the Danish Cancer Registry, and a clinical database, the Danish Pancreatic...... Cancer Database, in 2012-2013. MATERIAL AND METHODS: Registrations of pancreatic cancer from the Danish Cancer Registry over 1943-2012 were used to calculate age-specific incidence rates per 100 000 person years by sex and age in 5-year period, weighted by the Segi World Standard Population for age...... standardization. We used absolute numbers from the Cancer Registry and the Pancreatic Cancer Database, including distribution of topography of cancers registered in 2012-2013, to compare registration in the two data sources. RESULTS: The incidence rates of pancreatic cancer among Danish men increased until 1968...

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.

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...

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

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.

The role of image registration in brain mapping

Science.gov (United States)

Toga, A.W.; Thompson, P.M.

2008-01-01

Image registration is a key step in a great variety of biomedical imaging applications. It provides the ability to geometrically align one dataset with another, and is a prerequisite for all imaging applications that compare datasets across subjects, imaging modalities, or across time. Registration algorithms also enable the pooling and comparison of experimental findings across laboratories, the construction of population-based brain atlases, and the creation of systems to detect group patterns in structural and functional imaging data. We review the major types of registration approaches used in brain imaging today. We focus on their conceptual basis, the underlying mathematics, and their strengths and weaknesses in different contexts. We describe the major goals of registration, including data fusion, quantification of change, automated image segmentation and labeling, shape measurement, and pathology detection. We indicate that registration algorithms have great potential when used in conjunction with a digital brain atlas, which acts as a reference system in which brain images can be compared for statistical analysis. The resulting armory of registration approaches is fundamental to medical image analysis, and in a brain mapping context provides a means to elucidate clinical, demographic, or functional trends in the anatomy or physiology of the brain. PMID:19890483

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.

Multimodality image registration with software: state-of-the-art

International Nuclear Information System (INIS)

Slomka, Piotr J.; Baum, Richard P.

2009-01-01

Multimodality image integration of functional and anatomical data can be performed by means of dedicated hybrid imaging systems or by software image co-registration techniques. Hybrid positron emission tomography (PET)/computed tomography (CT) systems have found wide acceptance in oncological imaging, while software registration techniques have a significant role in patient-specific, cost-effective, and radiation dose-effective application of integrated imaging. Software techniques allow accurate (2-3 mm) rigid image registration of brain PET with CT and MRI. Nonlinear techniques are used in whole-body image registration, and recent developments allow for significantly accelerated computing times. Nonlinear software registration of PET with CT or MRI is required for multimodality radiation planning. Difficulties remain in the validation of nonlinear registration of soft tissue organs. The utilization of software-based multimodality image integration in a clinical environment is sometimes hindered by the lack of appropriate picture archiving and communication systems (PACS) infrastructure needed to efficiently and automatically integrate all available images into one common database. In cardiology applications, multimodality PET/single photon emission computed tomography and coronary CT angiography imaging is typically not required unless the results of one of the tests are equivocal. Software image registration is likely to be used in a complementary fashion with hybrid PET/CT or PET/magnetic resonance imaging systems. Software registration of stand-alone scans ''paved the way'' for the clinical application of hybrid scanners, demonstrating practical benefits of image integration before the hybrid dual-modality devices were available. (orig.)

76 FR 27898 - Registration and Recordation Program

Science.gov (United States)

2011-05-13

... to reflect a reorganization that has moved the Recordation function from the Visual Arts and... function from the Visual Arts and Recordation Division of the Registration and Recordation Program to the... Visual Arts Division of the Registration and Recordation Program, has been renamed the Recordation...

On combining algorithms for deformable image registration

NARCIS (Netherlands)

Muenzing, S.E.A.; Ginneken, van B.; Pluim, J.P.W.; Dawant, B.M.

2012-01-01

We propose a meta-algorithm for registration improvement by combining deformable image registrations (MetaReg). It is inspired by a well-established method from machine learning, the combination of classifiers. MetaReg consists of two main components: (1) A strategy for composing an improved

Numerical methods for image registration

CERN Document Server

Modersitzki, Jan

2003-01-01

Based on the author's lecture notes and research, this well-illustrated and comprehensive text is one of the first to provide an introduction to image registration with particular emphasis on numerical methods in medical imaging. Ideal for researchers in industry and academia, it is also a suitable study guide for graduate mathematicians, computer scientists, engineers, medical physicists, and radiologists.Image registration is utilised whenever information obtained from different viewpoints needs to be combined or compared and unwanted distortion needs to be eliminated. For example, CCTV imag

Propagation of registration uncertainty during multi-fraction cervical cancer brachytherapy

Science.gov (United States)

Amir-Khalili, A.; Hamarneh, G.; Zakariaee, R.; Spadinger, I.; Abugharbieh, R.

2017-10-01

Multi-fraction cervical cancer brachytherapy is a form of image-guided radiotherapy that heavily relies on 3D imaging during treatment planning, delivery, and quality control. In this context, deformable image registration can increase the accuracy of dosimetric evaluations, provided that one can account for the uncertainties associated with the registration process. To enable such capability, we propose a mathematical framework that first estimates the registration uncertainty and subsequently propagates the effects of the computed uncertainties from the registration stage through to the visualizations, organ segmentations, and dosimetric evaluations. To ensure the practicality of our proposed framework in real world image-guided radiotherapy contexts, we implemented our technique via a computationally efficient and generalizable algorithm that is compatible with existing deformable image registration software. In our clinical context of fractionated cervical cancer brachytherapy, we perform a retrospective analysis on 37 patients and present evidence that our proposed methodology for computing and propagating registration uncertainties may be beneficial during therapy planning and quality control. Specifically, we quantify and visualize the influence of registration uncertainty on dosimetric analysis during the computation of the total accumulated radiation dose on the bladder wall. We further show how registration uncertainty may be leveraged into enhanced visualizations that depict the quality of the registration and highlight potential deviations from the treatment plan prior to the delivery of radiation treatment. Finally, we show that we can improve the transfer of delineated volumetric organ segmentation labels from one fraction to the next by encoding the computed registration uncertainties into the segmentation labels.

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...

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.

Feature-Based Retinal Image Registration Using D-Saddle Feature

Directory of Open Access Journals (Sweden)

Roziana Ramli

2017-01-01

Full Text Available Retinal image registration is important to assist diagnosis and monitor retinal diseases, such as diabetic retinopathy and glaucoma. However, registering retinal images for various registration applications requires the detection and distribution of feature points on the low-quality region that consists of vessels of varying contrast and sizes. A recent feature detector known as Saddle detects feature points on vessels that are poorly distributed and densely positioned on strong contrast vessels. Therefore, we propose a multiresolution difference of Gaussian pyramid with Saddle detector (D-Saddle to detect feature points on the low-quality region that consists of vessels with varying contrast and sizes. D-Saddle is tested on Fundus Image Registration (FIRE Dataset that consists of 134 retinal image pairs. Experimental results show that D-Saddle successfully registered 43% of retinal image pairs with average registration accuracy of 2.329 pixels while a lower success rate is observed in other four state-of-the-art retinal image registration methods GDB-ICP (28%, Harris-PIIFD (4%, H-M (16%, and Saddle (16%. Furthermore, the registration accuracy of D-Saddle has the weakest correlation (Spearman with the intensity uniformity metric among all methods. Finally, the paired t-test shows that D-Saddle significantly improved the overall registration accuracy of the original Saddle.

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...

Co-registration of the BNCT treatment planning images for clinical practice

International Nuclear Information System (INIS)

Salli, Eero; Seppaelae, Tiina; Kankaanranta, Leena; Asikainen, Sami; Savolainen, Sauli; Koivunoro, Hanna

2006-01-01

We have co-registered MRI, CT and FBPA-PET images for BNCT in clinical practice. Co-registration improves the spatial accuracy of the treatment planning by enabling use of information from all the co-registered modalities. The multimodal co-registration has been implemented as a service product provided by the Imaging Center of Helsinki University Central Hospital to other departments. To increase the accuracy of co-registration and patient positioning in the head area BNCT, a patient-specific fixation mask suitable for PET, MRI and CT was developed. The goal of the fixation mask is to normalize the orientation of the patient's head and neck. Co-registration is performed at the image processing unit by using a rigid body model, mutual-information based algorithms and partly in-house developed software tools. The accuracy of co-registration is verified by comparing the locations of the external skin markers and anatomical landmarks in different modalities. After co-registration, the images are transformed and covered into a format required by the BNCT dose-planning software and set to the dose-planning unit of the hospital. So far co-registration has been done for 22 patients. The co-registration protocol has proved to be reliable and efficient. Some registration errors are seen on some patients in the neck area because the rigid-body model used in co-registration is not fully valid for the brain-neck entity. The registration accuracy in this area could likely be improved by implementing a co-registration procedure utilizing a partly non-rigid body model. (author)

The Geoscience Internet of Things

Science.gov (United States)

Lehnert, K.; Klump, J.

2012-04-01

Internet of Things is a term that refers to "uniquely identifiable objects (things) and their virtual representations in an Internet-like structure" (Wikipedia). We here use the term to describe new and innovative ways to integrate physical samples in the Earth Sciences into the emerging digital infrastructures that are developed to support research and education in the Geosciences. Many Earth Science data are acquired on solid earth samples through observations and experiments conducted in the field or in the lab. The application and long-term utility of sample-based data for science is critically dependent on (a) the availability of information (metadata) about the samples such as geographical location where the sample was collected, time of sampling, sampling method, etc. (b) links between the different data types available for individual samples that are dispersed in the literature and in digital data repositories, and (c) access to the samples themselves. Neither of these requirements could be achieved in the past due to incomplete documentation of samples in publications, use of ambiguous sample names, and the lack of a central catalog that allows researchers to find a sample's archiving location. New internet-based capabilities have been developed over the past few years for the registration and unique identification of samples that make it possible to overcome these problems. Services for the registration and unique identification of samples are provided by the System for Earth Sample Registration SESAR (www.geosamples.org). SESAR developed the International Geo Sample Number, or IGSN, as a unique identifier for samples and specimens collected from our natural environment. Since December 2011, the IGSN is governed by an international organization, the IGSN eV (www.igsn.org), which endorses and promotes an internationally unified approach for registration and discovery of physical specimens in the Geoscience community and is establishing a new modular and

SveDem, the Swedish Dementia Registry - a tool for improving the quality of diagnostics, treatment and care of dementia patients in clinical practice.

Directory of Open Access Journals (Sweden)

Dorota Religa

Full Text Available The Swedish Dementia Registry (SveDem was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden.SveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support (www.svedem.se. The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes.The database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007-2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden.SveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.

Temadag om registrering/katalogisering til Web-katalogen

DEFF Research Database (Denmark)

Hansen, Hanne Hørl; Hammershøi, Lene

2002-01-01

Referat fra temadag om registrering/katalogisering til Web-katalogen afholdt af DFs Interessekreds for Registrering på RUC d. 13.marts 2002. Oplægsholdere fra Danmark og England gav deres bud på status og udviklingstendenser for arbejdet med at skabe og forbedre web-baserede bibliotekskataloger...

40 CFR 79.4 - Requirement of registration.

Science.gov (United States)

2010-07-01

... problem, however, a fuel manufacturer may use an additive that he has not previously reported provided... Section 79.4 Protection of Environment ENVIRONMENTAL PROTECTION AGENCY (CONTINUED) AIR PROGRAMS (CONTINUED) REGISTRATION OF FUELS AND FUEL ADDITIVES General Provisions § 79.4 Requirement of registration. (a) Fuels. (1...

Learning-Based Approaches to Deformable Image Registration

NARCIS (Netherlands)

Münzing, SEA

2014-01-01

Accurate registration of images is an important and often crucial step in many areas of image processing and analysis, yet it is only used in a small percentage of possible applications. Automated registration methods are not considered to be sufficiently robust to handle complex deformations and

ACIR: automatic cochlea image registration

Science.gov (United States)

Al-Dhamari, Ibraheem; Bauer, Sabine; Paulus, Dietrich; Lissek, Friedrich; Jacob, Roland

2017-02-01

Efficient Cochlear Implant (CI) surgery requires prior knowledge of the cochlea's size and its characteristics. This information helps to select suitable implants for different patients. To get these measurements, a segmentation method of cochlea medical images is needed. An important pre-processing step for good cochlea segmentation involves efficient image registration. The cochlea's small size and complex structure, in addition to the different resolutions and head positions during imaging, reveals a big challenge for the automated registration of the different image modalities. In this paper, an Automatic Cochlea Image Registration (ACIR) method for multi- modal human cochlea images is proposed. This method is based on using small areas that have clear structures from both input images instead of registering the complete image. It uses the Adaptive Stochastic Gradient Descent Optimizer (ASGD) and Mattes's Mutual Information metric (MMI) to estimate 3D rigid transform parameters. The use of state of the art medical image registration optimizers published over the last two years are studied and compared quantitatively using the standard Dice Similarity Coefficient (DSC). ACIR requires only 4.86 seconds on average to align cochlea images automatically and to put all the modalities in the same spatial locations without human interference. The source code is based on the tool elastix and is provided for free as a 3D Slicer plugin. Another contribution of this work is a proposed public cochlea standard dataset which can be downloaded for free from a public XNAT server.

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

Simple shape space for 3D face registration

Science.gov (United States)

Košir, Andrej; Perkon, Igor; Bracun, Drago; Tasic, Jurij; Mozina, Janez

2009-09-01

Three dimensional (3D) face recognition is a topic getting increasing interest in biometric applications. In our research framework we developed a laser scanner that provides 3D cloud information and texture data. In a user scenario with cooperative subjects with indoor light conditions, we address three problems of 3D face biometrics: the face registration, the formulation of a shape space together with a special designed gradient algorithm and the impact of initial approximation to the convergence of a registration algorithm. By defining the face registration as a problem of aligning a 3D data cloud with a predefined reference template, we solve the registration problem with a second order gradient algorithm working on a shape space designed for reducing the computational complexity of the method.

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.

3-D brain image registration using optimal morphological processing

International Nuclear Information System (INIS)

Loncaric, S.; Dhawan, A.P.

1994-01-01

The three-dimensional (3-D) registration of Magnetic Resonance (MR) and Positron Emission Tomographic (PET) images of the brain is important for analysis of the human brain and its diseases. A procedure for optimization of (3-D) morphological structuring elements, based on a genetic algorithm, is presented in the paper. The registration of the MR and PET images is done by means of a registration procedure in two major phases. In the first phase, the Iterative Principal Axis Transform (IPAR) is used for initial registration. In the second phase, the optimal shape description method based on the Morphological Signature Transform (MST) is used for final registration. The morphological processing is used to improve the accuracy of the basic IPAR method. The brain ventricle is used as a landmark for MST registration. A near-optimal structuring element obtained by means of a genetic algorithm is used in MST to describe the shape of the ventricle. The method has been tested on the set of brain images demonstrating the feasibility of approach. (author). 11 refs., 3 figs

Registration of Vibro-acoustography Images and X-ray Mammography.

Science.gov (United States)

Gholam Hosseini, H; Fatemi, M; Alizad, A

2005-01-01

Image registration has been widely used for generating more diagnostic and clinical values in medical imaging. On the other hand, inaccurate image registration and incorrect localization of region of interest risks a potential impact on patients. Vibro-acoustography (VA) is a new imaging modality that has been applied to both medical and industrial imaging. Combining unique diagnostic information of VA with other medical imaging is one of our research interests. In this work, we studied the VA and x-ray image pairs and adopted a flexible control-point selection technique for image registration. A modified second-order polynomial, which leads to a scale/rotation/translation invariant registration, was used. The results of registration were used to spatially transform the breast VA images to map with the x-ray mammography with a registration error of less than 1.65 mm. These two completely different modalities were combined to generate an image including a ratio of each image pixel value. Therefore, the proposed technique allows clinicians to maximize their insight by combining the information from x-ray mammogram and VA modalities into a single image.

Clinical trial registration in physical therapy journals: a cross-sectional study.

Science.gov (United States)

Babu, Abraham Samuel; Veluswamy, Sundar Kumar; Rao, Pratiksha Tilak; Maiya, Arun G

2014-01-01

Clinical trial registration has become an important part of editorial policies of various biomedical journals, including a few physical therapy journals. However, the extent to which editorial boards enforce the need for trial registration varies across journals. The purpose of this study was to identify editorial policies and reporting of trial registration details in MEDLINE-indexed English-language physical therapy journals. This study was carried out using a cross-sectional design. Editorial policies on trial registration of MEDLINE-indexed member journals of the International Society of Physiotherapy Journal Editors (ISPJE) (Journal of Geriatric Physical Therapy, Journal of Hand Therapy, Journal of Neurologic Physical Therapy, Journal of Orthopaedic and Sports Physical Therapy, Journal of Physiotherapy [formerly Australian Journal of Physiotherapy], Journal of Science and Medicine in Sport, Manual Therapy, Physical Therapy, Physical Therapy in Sport, Physiotherapy, Physiotherapy Research International, Physiotherapy Theory and Practice, and Revista Brasileira de Fisioterapia) were reviewed in April 2013. Full texts of reports of clinical trials published in these journals between January 1, 2008, and December 31, 2012, were independently assessed for information on trial registration. Among the 13 journals, 8 recommended trial registration, and 6 emphasized prospective trial registration. As of April 2013, 4,618 articles were published between January 2008 and December 2012, of which 9% (417) were clinical trials and 29% (121/417) of these reported trial registration details. A positive trend in reporting of trial registration was observed from 2008 to 2012. The study was limited to MEDLINE-indexed ISPJE member journals. Editorial policies on trial registration of physical therapy journals and a rising trend toward reporting of trial registration details indicate a positive momentum toward trial registration. Physical therapy journal editors need to show

21 CFR 607.26 - Amendments to establishment registration.

Science.gov (United States)

2010-04-01

... registration. Changes in individual ownership, corporate or partnership structure, location, or blood-product...) as an amendment to registration within 5 days of such changes. Changes in the names of officers and...

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.

Retrivability in The Danish National Hospital Registry of HIV and hepatitis B and C coinfection diagnoses of patients managed in HIV centers 1995–2004

Directory of Open Access Journals (Sweden)

Sørensen Henrik T

2008-04-01

Full Text Available Abstract Background Hospital-based discharge registries are used increasingly for longitudinal epidemiological studies of HIV. We examined completeness of registration of HIV infections and of chronic hepatitis B (HBV and hepatitis C (HCV coinfections in the Danish National Hospital Registry (DNHR covering all Danish hospitals. Methods The Danish HIV Cohort Study (DHCS encompasses all HIV-infected patients treated in Danish HIV clinics since 1 January 1995. All 2,033 Danish patients in DHCS diagnosed with HIV-1 during the 10-year period from 1 January 1995 to 31 December 2004 were included in the current analysis. We used the DHCS as a reference to examine the completeness of HIV and of HBV and HCV coinfections recorded in DNHR. Cox regression analysis was used to estimate hazard ratios of time to diagnosis of HIV in DNHR compared to DHCS. Results Of the 2,033 HIV patients in DHCS, a total of 2,006 (99% were registered with HIV in DNHR. Of these, 1,888 (93% were registered in DNHR within one year of their first positive HIV test. A CD4 = 100,000 copies/ml and being diagnosed after 1 January 2000, were associated with earlier registration in DNHR, both in crude and adjusted analyses. Thirty (23% HIV patients registered with chronic HBV (n = 129 in DHCS and 126 (48% of HIV patients with HCV (n = 264 in DHCS were registered with these diagnoses in the DNHR. Further 17 and 8 patients were registered with HBV and HCV respectively in DNHR, but not in DHCS. The positive predictive values of being registered with HBV and HCV in DHCS were thereby estimated to 0.88 and 0.97 and in DNHR to 0.32 and 0.54. Conclusion The study demonstrates that secondary data from national hospital databases may be reliable for identification of patients diagnosed with HIV infection. However, the predictive value of co-morbidity data may be low.

15 CFR 296.7 - Joint venture registration.

Science.gov (United States)

2010-01-01

... 15 Commerce and Foreign Trade 1 2010-01-01 2010-01-01 false Joint venture registration. 296.7 Section 296.7 Commerce and Foreign Trade Regulations Relating to Commerce and Foreign Trade NATIONAL... PROGRAM General § 296.7 Joint venture registration. Joint ventures selected for assistance under the...

Multimodality image registration with software: state-of-the-art

Energy Technology Data Exchange (ETDEWEB)

Slomka, Piotr J. [Cedars-Sinai Medical Center, AIM Program/Department of Imaging, Los Angeles, CA (United States); University of California, David Geffen School of Medicine, Los Angeles, CA (United States); Baum, Richard P. [Center for PET, Department of Nuclear Medicine, Bad Berka (Germany)

2009-03-15

Multimodality image integration of functional and anatomical data can be performed by means of dedicated hybrid imaging systems or by software image co-registration techniques. Hybrid positron emission tomography (PET)/computed tomography (CT) systems have found wide acceptance in oncological imaging, while software registration techniques have a significant role in patient-specific, cost-effective, and radiation dose-effective application of integrated imaging. Software techniques allow accurate (2-3 mm) rigid image registration of brain PET with CT and MRI. Nonlinear techniques are used in whole-body image registration, and recent developments allow for significantly accelerated computing times. Nonlinear software registration of PET with CT or MRI is required for multimodality radiation planning. Difficulties remain in the validation of nonlinear registration of soft tissue organs. The utilization of software-based multimodality image integration in a clinical environment is sometimes hindered by the lack of appropriate picture archiving and communication systems (PACS) infrastructure needed to efficiently and automatically integrate all available images into one common database. In cardiology applications, multimodality PET/single photon emission computed tomography and coronary CT angiography imaging is typically not required unless the results of one of the tests are equivocal. Software image registration is likely to be used in a complementary fashion with hybrid PET/CT or PET/magnetic resonance imaging systems. Software registration of stand-alone scans ''paved the way'' for the clinical application of hybrid scanners, demonstrating practical benefits of image integration before the hybrid dual-modality devices were available. (orig.)

Population based ranking of frameless CT-MRI registration methods

Energy Technology Data Exchange (ETDEWEB)

Opposits, Gabor; Kis, Sandor A.; Tron, Lajos; Emri, Miklos [Debrecen Univ. (Hungary). Dept. of Nuclear Medicine; Berenyi, Ervin [Debrecen Univ. (Hungary). Dept. of Biomedical Laboratory and Imaging Science; Takacs, Endre [Rotating Gamma Ltd., Debrecen (Hungary); Dobai, Jozsef G.; Bognar, Laszlo [Debrecen Univ., Medical Center (Hungary). Dept. of Neurosurgery; Szuecs, Bernadett [ScanoMed Ltd., Debrecen (Hungary)

2015-07-01

Clinical practice often requires simultaneous information obtained by two different imaging modalities. Registration algorithms are commonly used for this purpose. Automated procedures are very helpful in cases when the same kind of registration has to be performed on images of a high number of subjects. Radiotherapists would prefer to use the best automated method to assist therapy planning, however there are not accepted procedures for ranking the different registration algorithms. We were interested in developing a method to measure the population level performance of CT-MRI registration algorithms by a parameter of values in the [0,1] interval. Pairs of CT and MRI images were collected from 1051 subjects. Results of an automated registration were corrected manually until a radiologist and a neurosurgeon expert both accepted the result as good. This way 1051 registered MRI images were produced by the same pair of experts to be used as gold standards for the evaluation of the performance of other registration algorithms. Pearson correlation coefficient, mutual information, normalized mutual information, Kullback-Leibler divergence, L{sub 1} norm and square L{sub 2} norm (dis)similarity measures were tested for sensitivity to indicate the extent of (dis)similarity of a pair of individual mismatched images. The square Hellinger distance proved suitable to grade the performance of registration algorithms at population level providing the developers with a valuable tool to rank algorithms. The developed procedure provides an objective method to find the registration algorithm performing the best on the population level out of newly constructed or available preselected ones.

Laser interrogation of latent vehicle registration number

Energy Technology Data Exchange (ETDEWEB)

Russo, R.E. [Lawrence Berkeley Lab., CA (United States). Energy and Environment Div.]|[Lawrence Livermore National Lab., CA (United States). Forensic Science Center; Pelkey, G.E. [City of Livermore Police Dept., CA (United States); Grant, P.; Whipple, R.E.; Andresen, B.D. [Lawrence Livermore National Lab., CA (United States). Forensic Science Center

1994-09-01

A recent investigation involved automobile registration numbers as important evidentiary specimens. In California, as in most states, small, thin metallic decals are issued to owners of vehicles each year as the registration is renewed. The decals are applied directly to the license plate of the vehicle and typically on top of the previous year`s expired decal. To afford some degree of security, the individual registration decals have been designed to tear easily; they cannot be separated from each other, but can be carefully removed intact from the metal license plate by using a razor blade. In September 1993, the City of Livermore Police Department obtained a blue 1993 California decal that had been placed over an orange 1992 decal. The two decals were being investigated as possible evidence in a case involving vehicle registration fraud. To confirm the suspicion and implicate a suspect, the department needed to known the registration number on the bottom (completely covered) 1992 decal. The authors attempted to use intense and directed light to interrogate the colored stickers. Optical illumination using a filtered white-light source partially identified the latent number. However, the most successful technique used a tunable dye laser pumped by a pulsed Nd:YAG laser. By selectively tuning the wavelength and intensity of the dye laser, backlit illumination of the decals permitted visualization of the underlying registration number through the surface of the top sticker. With optimally-tuned wavelength and intensity, 100% accuracy was obtained in identifying the sequence of latent characters. The advantage of optical techniques is their completely nondestructive nature, thus preserving the evidence for further interrogation or courtroom presentation.

Pesticide Registration Information System

Data.gov (United States)

U.S. Environmental Protection Agency — PRISM provides an integrated, web portal for all pesticide related data, communications, registrations and transactions for OPP and its stakeholders, partners and...

The Brazilian Registry of Adult Patient Undergoing Cardiovascular Surgery, the BYPASS Project: Results of the First 1,722 Patients

Directory of Open Access Journals (Sweden)

Walter J. Gomes

Full Text Available Abstract Objective: To report the early results of the BYPASS project - the Brazilian registrY of adult Patient undergoing cArdiovaScular Surgery - a national, observational, prospective, and longitudinal follow-up registry, aiming to chart a profile of patients undergoing cardiovascular surgery in Brazil, assessing the data harvested from the initial 1,722 patients. Methods: Data collection involved institutions throughout the whole country, comprising 17 centers in 4 regions: Southeast (8, Northeast (5, South (3, and Center-West (1. The study population consists of patients over 18 years of age, and the types of operations recorded were: coronary artery bypass graft (CABG, mitral valve, aortic valve (either conventional or transcatheter, surgical correction of atrial fibrillation, cardiac transplantation, mechanical circulatory support and congenital heart diseases in adults. Results: 83.1% of patients came from the public health system (SUS, 9.6% from the supplemental (private insurance healthcare systems; and 7.3% from private (out-of -pocket clinic. Male patients comprised 66%, 30% were diabetics, 46% had dyslipidemia, 28% previously sustained a myocardial infarction, and 9.4% underwent prior cardiovascular surgery. Patients underwent coronary artery bypass surgery were 54.1% and 31.5% to valve surgery, either isolated or combined. The overall postoperative mortality up to the 7th postoperative day was 4%; for CABG was 2.6%, and for valve operations, 4.4%. Conclusion: This first report outlines the consecution of the Brazilian surgical cardiac database, intended to serve primarily as a tool for providing information for clinical improvement and patient safety and constitute a basis for production of research protocols.

A Novel Technique for Prealignment in Multimodality Medical Image Registration

Directory of Open Access Journals (Sweden)

Wu Zhou

2014-01-01

Full Text Available Image pair is often aligned initially based on a rigid or affine transformation before a deformable registration method is applied in medical image registration. Inappropriate initial registration may compromise the registration speed or impede the convergence of the optimization algorithm. In this work, a novel technique was proposed for prealignment in both monomodality and multimodality image registration based on statistical correlation of gradient information. A simple and robust algorithm was proposed to determine the rotational differences between two images based on orientation histogram matching accumulated from local orientation of each pixel without any feature extraction. Experimental results showed that it was effective to acquire the orientation angle between two unregistered images with advantages over the existed method based on edge-map in multimodalities. Applying the orientation detection into the registration of CT/MR, T1/T2 MRI, and monomadality images with respect to rigid and nonrigid deformation improved the chances of finding the global optimization of the registration and reduced the search space of optimization.

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

Interactive initialization of 2D/3D rigid registration

Energy Technology Data Exchange (ETDEWEB)

Gong, Ren Hui; Güler, Özgür [The Sheikh Zayed Institute for Pediatric Surgical Innovation, Children' s National Medical Center, Washington, DC 20010 (United States); Kürklüoglu, Mustafa [Department of Cardiac Surgery, Children' s National Medical Center, Washington, DC 20010 (United States); Lovejoy, John [Department of Orthopaedic Surgery and Sports Medicine, Children' s National Medical Center, Washington, DC 20010 (United States); Yaniv, Ziv, E-mail: ZYaniv@childrensnational.org [The Sheikh Zayed Institute for Pediatric Surgical Innovation, Children' s National Medical Center, Washington, DC 20010 and Departments of Pediatrics and Radiology, George Washington University, Washington, DC 20037 (United States)

2013-12-15

Purpose: Registration is one of the key technical components in an image-guided navigation system. A large number of 2D/3D registration algorithms have been previously proposed, but have not been able to transition into clinical practice. The authors identify the primary reason for the lack of adoption with the prerequisite for a sufficiently accurate initial transformation, mean target registration error of about 10 mm or less. In this paper, the authors present two interactive initialization approaches that provide the desired accuracy for x-ray/MR and x-ray/CT registration in the operating room setting. Methods: The authors have developed two interactive registration methods based on visual alignment of a preoperative image, MR, or CT to intraoperative x-rays. In the first approach, the operator uses a gesture based interface to align a volume rendering of the preoperative image to multiple x-rays. The second approach uses a tracked tool available as part of a navigation system. Preoperatively, a virtual replica of the tool is positioned next to the anatomical structures visible in the volumetric data. Intraoperatively, the physical tool is positioned in a similar manner and subsequently used to align a volume rendering to the x-ray images using an augmented reality (AR) approach. Both methods were assessed using three publicly available reference data sets for 2D/3D registration evaluation. Results: In the authors' experiments, the authors show that for x-ray/MR registration, the gesture based method resulted in a mean target registration error (mTRE) of 9.3 ± 5.0 mm with an average interaction time of 146.3 ± 73.0 s, and the AR-based method had mTREs of 7.2 ± 3.2 mm with interaction times of 44 ± 32 s. For x-ray/CT registration, the gesture based method resulted in a mTRE of 7.4 ± 5.0 mm with an average interaction time of 132.1 ± 66.4 s, and the AR-based method had mTREs of 8.3 ± 5.0 mm with interaction times of 58 ± 52 s. Conclusions: Based on

Interactive initialization of 2D/3D rigid registration

International Nuclear Information System (INIS)

Gong, Ren Hui; Güler, Özgür; Kürklüoglu, Mustafa; Lovejoy, John; Yaniv, Ziv

2013-01-01

Purpose: Registration is one of the key technical components in an image-guided navigation system. A large number of 2D/3D registration algorithms have been previously proposed, but have not been able to transition into clinical practice. The authors identify the primary reason for the lack of adoption with the prerequisite for a sufficiently accurate initial transformation, mean target registration error of about 10 mm or less. In this paper, the authors present two interactive initialization approaches that provide the desired accuracy for x-ray/MR and x-ray/CT registration in the operating room setting. Methods: The authors have developed two interactive registration methods based on visual alignment of a preoperative image, MR, or CT to intraoperative x-rays. In the first approach, the operator uses a gesture based interface to align a volume rendering of the preoperative image to multiple x-rays. The second approach uses a tracked tool available as part of a navigation system. Preoperatively, a virtual replica of the tool is positioned next to the anatomical structures visible in the volumetric data. Intraoperatively, the physical tool is positioned in a similar manner and subsequently used to align a volume rendering to the x-ray images using an augmented reality (AR) approach. Both methods were assessed using three publicly available reference data sets for 2D/3D registration evaluation. Results: In the authors' experiments, the authors show that for x-ray/MR registration, the gesture based method resulted in a mean target registration error (mTRE) of 9.3 ± 5.0 mm with an average interaction time of 146.3 ± 73.0 s, and the AR-based method had mTREs of 7.2 ± 3.2 mm with interaction times of 44 ± 32 s. For x-ray/CT registration, the gesture based method resulted in a mTRE of 7.4 ± 5.0 mm with an average interaction time of 132.1 ± 66.4 s, and the AR-based method had mTREs of 8.3 ± 5.0 mm with interaction times of 58 ± 52 s. Conclusions: Based on the

Danish Pancreatic Cancer Database

DEFF Research Database (Denmark)

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

2016-01-01

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

Information on blinding in registered records of clinical trials

Directory of Open Access Journals (Sweden)

Viergever Roderik F

2012-11-01

Full Text Available Abstract Information on blinding is part of the data that should be provided upon registration of a trial at a clinical trials registry. Reporting of blinding is often absent or of low quality in published articles of clinical trials. This study researched the presence and quality of information on blinding in registered records of clinical trials and highlights the important role of data-recording formats at clinical trial registries in ensuring high-quality registration.

[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.

JALFHCC - Patient Registration Service

Data.gov (United States)

Department of Veterans Affairs — The Captain James A. Lovell Federal Health Care Center (JALFHCC) Patient Registration Service supports the operation of the first VA/Navy Federal Health Care Center...

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

CT image registration in sinogram space.

Science.gov (United States)

Mao, Weihua; Li, Tianfang; Wink, Nicole; Xing, Lei

2007-09-01

Object displacement in a CT scan is generally reflected in CT projection data or sinogram. In this work, the direct relationship between object motion and the change of CT projection data (sinogram) is investigated and this knowledge is applied to create a novel algorithm for sinogram registration. Calculated and experimental results demonstrate that the registration technique works well for registering rigid 2D or 3D motion in parallel and fan beam samplings. Problem and solution for 3D sinogram-based registration of metallic fiducials are also addressed. Since the motion is registered before image reconstruction, the presented algorithm is particularly useful when registering images with metal or truncation artifacts. In addition, this algorithm is valuable for dealing with situations where only limited projection data are available, making it appealing for various applications in image guided radiation therapy.

CT image registration in sinogram space

International Nuclear Information System (INIS)

Mao Weihua; Li Tianfang; Wink, Nicole; Xing Lei

2007-01-01

Object displacement in a CT scan is generally reflected in CT projection data or sinogram. In this work, the direct relationship between object motion and the change of CT projection data (sinogram) is investigated and this knowledge is applied to create a novel algorithm for sinogram registration. Calculated and experimental results demonstrate that the registration technique works well for registering rigid 2D or 3D motion in parallel and fan beam samplings. Problem and solution for 3D sinogram-based registration of metallic fiducials are also addressed. Since the motion is registered before image reconstruction, the presented algorithm is particularly useful when registering images with metal or truncation artifacts. In addition, this algorithm is valuable for dealing with situations where only limited projection data are available, making it appealing for various applications in image guided radiation therapy

Automatic registration of terrestrial point cloud using panoramic reflectance images

NARCIS (Netherlands)

Kang, Z.

2008-01-01

Much attention is paid to registration of terrestrial point clouds nowadays. Research is carried out towards improved efficiency and automation of the registration process. This paper reports a new approach for point clouds registration utilizing reflectance panoramic images. The approach follows a

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.

Locally orderless registration

DEFF Research Database (Denmark)

Darkner, Sune; Sporring, Jon

2013-01-01

This paper presents a unifying approach for calculating a wide range of popular, but seemingly very different, similarity measures. Our domain is the registration of n-dimensional images sampled on a regular grid, and our approach is well suited for gradient-based optimization algorithms. Our app...

Biomedical Image Registration

DEFF Research Database (Denmark)

This book constitutes the refereed proceedings of the 8th International Workshop on Biomedical Image Registration, WBIR 2018, held in Leiden, The Netherlands, in June 2018. The 11 full and poster papers included in this volume were carefully reviewed and selected from 17 submitted papers. The pap...

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

4D ultrasound and 3D MRI registration of beating heart

International Nuclear Information System (INIS)

Herlambang, N.; Matsumiya, K.; Masamune, K.; Dohi, T.; Liao, H.; Tsukihara, H.; Takamoto, S.

2007-01-01

To realize intra-cardiac surgery without cardio-pulmonary bypass, a medical imaging technique with both high image quality and data acquisition rate that is fast enough to follow heart beat movements is required. In this research, we proposed a method that utilized the image quality of MRI and the speed of ultrasound. We developed a 4D image reconstruction method using image registration of 3D MRI and 4D ultrasound images. The registration method consists of rigid registration between 3D MRI and 3D ultrasound with the same heart beat phase, and non-rigid registration between 3D ultrasound images from different heart beat phases. Non-rigid registration was performed with B-spline based registration using variable spring model. In phantom experiment using balloon phantom, registration accuracy was less than 2 mm for total heart volume variation range of 10%. We applied our registration method on 3D MRI and 4D ultrasound images of a volunteer's beating heart data and confirmed through visual observation that heart beat pattern was well reproduced. (orig.)

Robust linear registration of CT images using random regression forests

Science.gov (United States)

Konukoglu, Ender; Criminisi, Antonio; Pathak, Sayan; Robertson, Duncan; White, Steve; Haynor, David; Siddiqui, Khan

2011-03-01

Global linear registration is a necessary first step for many different tasks in medical image analysis. Comparing longitudinal studies1, cross-modality fusion2, and many other applications depend heavily on the success of the automatic registration. The robustness and efficiency of this step is crucial as it affects all subsequent operations. Most common techniques cast the linear registration problem as the minimization of a global energy function based on the image intensities. Although these algorithms have proved useful, their robustness in fully automated scenarios is still an open question. In fact, the optimization step often gets caught in local minima yielding unsatisfactory results. Recent algorithms constrain the space of registration parameters by exploiting implicit or explicit organ segmentations, thus increasing robustness4,5. In this work we propose a novel robust algorithm for automatic global linear image registration. Our method uses random regression forests to estimate posterior probability distributions for the locations of anatomical structures - represented as axis aligned bounding boxes6. These posterior distributions are later integrated in a global linear registration algorithm. The biggest advantage of our algorithm is that it does not require pre-defined segmentations or regions. Yet it yields robust registration results. We compare the robustness of our algorithm with that of the state of the art Elastix toolbox7. Validation is performed via 1464 pair-wise registrations in a database of very diverse 3D CT images. We show that our method decreases the "failure" rate of the global linear registration from 12.5% (Elastix) to only 1.9%.

[Multimodal medical image registration using cubic spline interpolation method].

Science.gov (United States)

He, Yuanlie; Tian, Lianfang; Chen, Ping; Wang, Lifei; Ye, Guangchun; Mao, Zongyuan

2007-12-01

Based on the characteristic of the PET-CT multimodal image series, a novel image registration and fusion method is proposed, in which the cubic spline interpolation method is applied to realize the interpolation of PET-CT image series, then registration is carried out by using mutual information algorithm and finally the improved principal component analysis method is used for the fusion of PET-CT multimodal images to enhance the visual effect of PET image, thus satisfied registration and fusion results are obtained. The cubic spline interpolation method is used for reconstruction to restore the missed information between image slices, which can compensate for the shortage of previous registration methods, improve the accuracy of the registration, and make the fused multimodal images more similar to the real image. Finally, the cubic spline interpolation method has been successfully applied in developing 3D-CRT (3D Conformal Radiation Therapy) system.

Performance evaluation of grid-enabled registration algorithms using bronze-standards

CERN Document Server

Glatard, T; Montagnat, J

2006-01-01

Evaluating registration algorithms is difficult due to the lack of gold standard in most clinical procedures. The bronze standard is a real-data based statistical method providing an alternative registration reference through a computationally intensive image database registration procedure. We propose in this paper an efficient implementation of this method through a grid-interfaced workflow enactor enabling the concurrent processing of hundreds of image registrations in a couple of hours only. The performances of two different grid infrastructures were compared. We computed the accuracy of 4 different rigid registration algorithms on longitudinal MRI images of brain tumors. Results showed an average subvoxel accuracy of 0.4 mm and 0.15 degrees in rotation.

Consistency of parametric registration in serial MRI studies of brain tumor progression

International Nuclear Information System (INIS)

Mang, Andreas; Buzug, Thorsten M.; Schnabel, Julia A.; Crum, William R.; Modat, Marc; Ourselin, Sebastien; Hawkes, David J.; Camara-Rey, Oscar; Palm, Christoph; Caseiras, Gisele Brasil; Jaeger, H.R.

2008-01-01

The consistency of parametric registration in multi-temporal magnetic resonance (MR) imaging studies was evaluated. Serial MRI scans of adult patients with a brain tumor (glioma) were aligned by parametric registration. The performance of low-order spatial alignment (6/9/12 degrees of freedom) of different 3D serial MR-weighted images is evaluated. A registration protocol for the alignment of all images to one reference coordinate system at baseline is presented. Registration results were evaluated for both, multimodal intra-timepoint and mono-modal multi-temporal registration. The latter case might present a challenge to automatic intensity-based registration algorithms due to ill-defined correspondences. The performance of our algorithm was assessed by testing the inverse registration consistency. Four different similarity measures were evaluated to assess consistency. Careful visual inspection suggests that images are well aligned, but their consistency may be imperfect. Sub-voxel inconsistency within the brain was found for allsimilarity measures used for parametric multi-temporal registration. T1-weighted images were most reliable for establishing spatial correspondence between different timepoints. The parametric registration algorithm is feasible for use in this application. The sub-voxel resolution mean displacement error of registration transformations demonstrates that the algorithm converges to an almost identical solution for forward and reverse registration. (orig.)

Accelerating Neuroimage Registration through Parallel Computation of Similarity Metric.

Directory of Open Access Journals (Sweden)

Yun-Gang Luo

Full Text Available Neuroimage registration is crucial for brain morphometric analysis and treatment efficacy evaluation. However, existing advanced registration algorithms such as FLIRT and ANTs are not efficient enough for clinical use. In this paper, a GPU implementation of FLIRT with the correlation ratio (CR as the similarity metric and a GPU accelerated correlation coefficient (CC calculation for the symmetric diffeomorphic registration of ANTs have been developed. The comparison with their corresponding original tools shows that our accelerated algorithms can greatly outperform the original algorithm in terms of computational efficiency. This paper demonstrates the great potential of applying these registration tools in clinical applications.

75 FR 52737 - Pesticide Product Registrations; Unconditional and Conditional Approvals

Science.gov (United States)

2010-08-27

...: Plasma Neem Oil Biological insecticide, EPA Registration Number 84185-4 for use on several food and non...) of the Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA), of registrations for pesticide... the end of the relevant registration approval summary using the instructions provided under FOR...

Evaluation of whole-body MR to CT deformable image registration

NARCIS (Netherlands)

Akbarzadeh, A.; Gutierrez, D.; Baskin, A.; Ay, M. R.; Ahmadian, A.; Alam, N. Riahi; Loevblad, K. O.; Zaidi, H.

2013-01-01

Multimodality image registration plays a crucial role in various clinical and research applications. The aim of this study is to present an optimized MR to CT whole-body deformable image registration algorithm and its validation using clinical studies. A 3D intermodality registration technique based

Expert Talks: Understanding civil registration and vital statistics ...

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

2017-09-13

Sep 13, 2017 ... What are CRVS systems and why do they matter? ... Cambodia cleared civil registration backlogs by providing free, time-bound registration. ... IDRC supports results-based research that has real impacts on the ground and ...

Serial volumetric registration of pulmonary CT studies

Science.gov (United States)

Silva, José Silvestre; Silva, Augusto; Sousa Santos, Beatriz

2008-03-01

Detailed morphological analysis of pulmonary structures and tissue, provided by modern CT scanners, is of utmost importance as in the case of oncological applications both for diagnosis, treatment, and follow-up. In this case, a patient may go through several tomographic studies throughout a period of time originating volumetric sets of image data that must be appropriately registered in order to track suspicious radiological findings. The structures or regions of interest may change their position or shape in CT exams acquired at different moments, due to postural, physiologic or pathologic changes, so, the exams should be registered before any follow-up information can be extracted. Postural mismatching throughout time is practically impossible to avoid being particularly evident when imaging is performed at the limiting spatial resolution. In this paper, we propose a method for intra-patient registration of pulmonary CT studies, to assist in the management of the oncological pathology. Our method takes advantage of prior segmentation work. In the first step, the pulmonary segmentation is performed where trachea and main bronchi are identified. Then, the registration method proceeds with a longitudinal alignment based on morphological features of the lungs, such as the position of the carina, the pulmonary areas, the centers of mass and the pulmonary trans-axial principal axis. The final step corresponds to the trans-axial registration of the corresponding pulmonary masked regions. This is accomplished by a pairwise sectional registration process driven by an iterative search of the affine transformation parameters leading to optimal similarity metrics. Results with several cases of intra-patient, intra-modality registration, up to 7 time points, show that this method provides accurate registration which is needed for quantitative tracking of lesions and the development of image fusion strategies that may effectively assist the follow-up process.

Groupwise registration of MR brain images with tumors

Science.gov (United States)

Tang, Zhenyu; Wu, Yihong; Fan, Yong

2017-09-01

A novel groupwise image registration framework is developed for registering MR brain images with tumors. Our method iteratively estimates a normal-appearance counterpart for each tumor image to be registered and constructs a directed graph (digraph) of normal-appearance images to guide the groupwise image registration. Particularly, our method maps each tumor image to its normal appearance counterpart by identifying and inpainting brain tumor regions with intensity information estimated using a low-rank plus sparse matrix decomposition based image representation technique. The estimated normal-appearance images are groupwisely registered to a group center image guided by a digraph of images so that the total length of ‘image registration paths’ to be the minimum, and then the original tumor images are warped to the group center image using the resulting deformation fields. We have evaluated our method based on both simulated and real MR brain tumor images. The registration results were evaluated with overlap measures of corresponding brain regions and average entropy of image intensity information, and Wilcoxon signed rank tests were adopted to compare different methods with respect to their regional overlap measures. Compared with a groupwise image registration method that is applied to normal-appearance images estimated using the traditional low-rank plus sparse matrix decomposition based image inpainting, our method achieved higher image registration accuracy with statistical significance (p  =  7.02  ×  10-9).

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)

Fast free-form deformable registration via calculus of variations

International Nuclear Information System (INIS)

Lu Weiguo; Chen Mingli; Olivera, Gustavo H; Ruchala, Kenneth J; Mackie, Thomas R

2004-01-01

In this paper, we present a fully automatic, fast and accurate deformable registration technique. This technique deals with free-form deformation. It minimizes an energy functional that combines both similarity and smoothness measures. By using calculus of variations, the minimization problem was represented as a set of nonlinear elliptic partial differential equations (PDEs). A Gauss-Seidel finite difference scheme is used to iteratively solve the PDE. The registration is refined by a multi-resolution approach. The whole process is fully automatic. It takes less than 3 min to register two three-dimensional (3D) image sets of size 256 x 256 x 61 using a single 933 MHz personal computer. Extensive experiments are presented. These experiments include simulations, phantom studies and clinical image studies. Experimental results show that our model and algorithm are suited for registration of temporal images of a deformable body. The registration of inspiration and expiration phases of the lung images shows that the method is able to deal with large deformations. When applied to the daily CT images of a prostate patient, the results show that registration based on iterative refinement of displacement field is appropriate to describe the local deformations in the prostate and the rectum. Similarity measures improved significantly after the registration. The target application of this paper is for radiotherapy treatment planning and evaluation that incorporates internal organ deformation throughout the course of radiation therapy. The registration method could also be equally applied in diagnostic radiology

Feasibility of Multimodal Deformable Registration for Head and Neck Tumor Treatment Planning

Energy Technology Data Exchange (ETDEWEB)

Fortunati, Valerio, E-mail: v.fortunati@erasmusmc.nl [Biomedical Imaging Group Rotterdam, Department of Medical Informatics and Radiology, Erasmus MC University Medical Center, Rotterdam (Netherlands); Verhaart, René F. [Hyperthermia Unit, Department of Radiation Oncology, Erasmus MC University Medical Center Cancer Institute, Rotterdam (Netherlands); Angeloni, Francesco [Istituto di Ricovero e Cura a Carattere Scientifico Foundation SDN for Research and High Education in Nuclear Diagnostics, Naples (Italy); Lugt, Aad van der [Department of Radiology, Erasmus MC University Medical Center, Rotterdam (Netherlands); Niessen, Wiro J. [Biomedical Imaging Group Rotterdam, Department of Medical Informatics and Radiology, Erasmus MC University Medical Center, Rotterdam (Netherlands); Faculty of Applied Sciences, Delft University of Technology, Delft (Netherlands); Veenland, Jifke F. [Biomedical Imaging Group Rotterdam, Department of Medical Informatics and Radiology, Erasmus MC University Medical Center, Rotterdam (Netherlands); Paulides, Margarethus M. [Hyperthermia Unit, Department of Radiation Oncology, Erasmus MC University Medical Center Cancer Institute, Rotterdam (Netherlands); Walsum, Theo van [Biomedical Imaging Group Rotterdam, Department of Medical Informatics and Radiology, Erasmus MC University Medical Center, Rotterdam (Netherlands)

2014-09-01

Purpose: To investigate the feasibility of using deformable registration in clinical practice to fuse MR and CT images of the head and neck for treatment planning. Method and Materials: A state-of-the-art deformable registration algorithm was optimized, evaluated, and compared with rigid registration. The evaluation was based on manually annotated anatomic landmarks and regions of interest in both modalities. We also developed a multiparametric registration approach, which simultaneously aligns T1- and T2-weighted MR sequences to CT. This was evaluated and compared with single-parametric approaches. Results: Our results show that deformable registration yielded a better accuracy than rigid registration, without introducing unrealistic deformations. For deformable registration, an average landmark alignment of approximatively 1.7 mm was obtained. For all the regions of interest excluding the cerebellum and the parotids, deformable registration provided a median modified Hausdorff distance of approximatively 1 mm. Similar accuracies were obtained for the single-parameter and multiparameter approaches. Conclusions: This study demonstrates that deformable registration of head-and-neck CT and MR images is feasible, with overall a significanlty higher accuracy than for rigid registration.

Feasibility of Multimodal Deformable Registration for Head and Neck Tumor Treatment Planning

International Nuclear Information System (INIS)

Fortunati, Valerio; Verhaart, René F.; Angeloni, Francesco; Lugt, Aad van der; Niessen, Wiro J.; Veenland, Jifke F.; Paulides, Margarethus M.; Walsum, Theo van

2014-01-01

Purpose: To investigate the feasibility of using deformable registration in clinical practice to fuse MR and CT images of the head and neck for treatment planning. Method and Materials: A state-of-the-art deformable registration algorithm was optimized, evaluated, and compared with rigid registration. The evaluation was based on manually annotated anatomic landmarks and regions of interest in both modalities. We also developed a multiparametric registration approach, which simultaneously aligns T1- and T2-weighted MR sequences to CT. This was evaluated and compared with single-parametric approaches. Results: Our results show that deformable registration yielded a better accuracy than rigid registration, without introducing unrealistic deformations. For deformable registration, an average landmark alignment of approximatively 1.7 mm was obtained. For all the regions of interest excluding the cerebellum and the parotids, deformable registration provided a median modified Hausdorff distance of approximatively 1 mm. Similar accuracies were obtained for the single-parameter and multiparameter approaches. Conclusions: This study demonstrates that deformable registration of head-and-neck CT and MR images is feasible, with overall a significanlty higher accuracy than for rigid registration

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

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...

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...

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...

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...

Registration of 3D Face Scans with Average Face Models

NARCIS (Netherlands)

A.A. Salah (Albert Ali); N. Alyuz; L. Akarun

2008-01-01

htmlabstractThe accuracy of a 3D face recognition system depends on a correct registration that aligns the facial surfaces and makes a comparison possible. The best results obtained so far use a costly one-to-all registration approach, which requires the registration of each facial surface to all

Pydpiper: A Flexible Toolkit for Constructing Novel Registration Pipelines

Directory of Open Access Journals (Sweden)

Miriam eFriedel

2014-07-01

Full Text Available Using neuroimaging technologies to elucidate the relationship between genotype and phenotype and brain and behavior will be a key contribution to biomedical research in the twenty-first century. Among the many methods for analyzing neuroimaging data, image registration deserves particular attention due to its wide range of applications. Finding strategies to register together many images and analyze the differences between them can be a challenge, particularly given that different experimental designs require different registration strategies. Moreover, writing software that can handle different types of image registration pipelines in a flexible, reusable and extensible way can be challenging. In response to this challenge, we have created Pydpiper, a neuroimaging registration toolkit written in Python. Pydpiper is an open-source, freely available pipeline framework that provides multiple modules for various image registration applications. Pydpiper offers five key innovations. Specifically: (1 a robust file handling class that allows access to outputs from all stages of registration at any point in the pipeline; (2 the ability of the framework to eliminate duplicate stages; (3 reusable, easy to subclass modules; (4 a development toolkit written for non-developers; (5 four complete applications that run complex image registration pipelines ``out-of-the-box.'' In this paper, we will discuss both the general Pydpiper framework and the various ways in which component modules can be pieced together to easily create new registration pipelines. This will include a discussion of the core principles motivating code development and a comparison of Pydpiper with other available toolkits. We also provide a comprehensive, line-by-line example to orient users with limited programming knowledge and highlight some of the most useful features of Pydpiper. In addition, we will present the four current applications of the code.

Pydpiper: a flexible toolkit for constructing novel registration pipelines.

Science.gov (United States)

Friedel, Miriam; van Eede, Matthijs C; Pipitone, Jon; Chakravarty, M Mallar; Lerch, Jason P

2014-01-01

Using neuroimaging technologies to elucidate the relationship between genotype and phenotype and brain and behavior will be a key contribution to biomedical research in the twenty-first century. Among the many methods for analyzing neuroimaging data, image registration deserves particular attention due to its wide range of applications. Finding strategies to register together many images and analyze the differences between them can be a challenge, particularly given that different experimental designs require different registration strategies. Moreover, writing software that can handle different types of image registration pipelines in a flexible, reusable and extensible way can be challenging. In response to this challenge, we have created Pydpiper, a neuroimaging registration toolkit written in Python. Pydpiper is an open-source, freely available software package that provides multiple modules for various image registration applications. Pydpiper offers five key innovations. Specifically: (1) a robust file handling class that allows access to outputs from all stages of registration at any point in the pipeline; (2) the ability of the framework to eliminate duplicate stages; (3) reusable, easy to subclass modules; (4) a development toolkit written for non-developers; (5) four complete applications that run complex image registration pipelines "out-of-the-box." In this paper, we will discuss both the general Pydpiper framework and the various ways in which component modules can be pieced together to easily create new registration pipelines. This will include a discussion of the core principles motivating code development and a comparison of Pydpiper with other available toolkits. We also provide a comprehensive, line-by-line example to orient users with limited programming knowledge and highlight some of the most useful features of Pydpiper. In addition, we will present the four current applications of the code.

Evaluation of a web-based registry of inherited bleeding disorders: a descriptive study of the Brazilian experience with HEMOVIDAweb Coagulopatias.

Science.gov (United States)

Rezende, Suely Meireles; Rodrigues, Silvia Helena Lacerda; Brito, Kelly Neves Pinheiro; da Silva, Diego Lima Quintino; Santo, Marcos Lázaro; Simões, Bárbara de Jesus; Genovez, Guilherme; Melo, Helder Teixeira; Araújo, João Paulo Baccara; Barca, Danila Augusta Accioly Varella

2017-02-10

Inherited bleeding disorders (IBD) consist of a group of rare heterogeneous diseases, which require treatment for life. Management of these disorders is complex and costly. Therefore, good quality data of the affected population is crucial to guide policy planning. The aim of this manuscript is to describe the impact of a national, web-based registry - the Hemovidaweb Coagulopatias (HWC) - in the management of the IBD in Brazil. The system was developed in PHP 5.0 language and is available on the internet at http://coagulopatiasweb.datasus.gov.br . The system was validated in September 2008 and launched nationally with input from January 1, 2009. HWC collects variables related to socio-demographic, clinical, laboratory and treatment data of patients with IBD. Within 7 years, there was an increment of 90.8% on the diagnosis of IBD altogether, which increased from 11,040 in December 2007 to 21,066 in December 2014. This is now the fourth and third largest world population of patients with haemophilia and von Willebrand's disease (vWD), respectively, according to the most recent (2015) Annual Global Survey of the World Federation of Hemophilia. The data collected provided the basis for planning and implementing home therapy, prophylaxis and immune tolerance induction (ITI), recently initiated in Brazil. HWC was an effective tool in the increment of registration of patients with IBD in Brazil. Furthermore, it was essential to support policy planning, monitoring, evaluation and treatment. Future development should focus on surveillance, health outcomes and research. Every country should implement a national registry on IBD.

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.

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)

Supervised local error estimation for nonlinear image registration using convolutional neural networks

NARCIS (Netherlands)

Eppenhof, Koen A.J.; Pluim, Josien P.W.; Styner, M.A.; Angelini, E.D.

2017-01-01

Error estimation in medical image registration is valuable when validating, comparing, or combining registration methods. To validate a nonlinear image registration method, ideally the registration error should be known for the entire image domain. We propose a supervised method for the estimation

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...

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...

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...

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...

EPA Facility Registry Service (FRS): RCRA_TRANS