Science.gov

Sample records for registries

  1. JBEI Registry

    SciTech Connect

    Ham, Timothy

    2008-12-01

    The JBEI Registry is a software to store and manage to a database of biological parts. It is intended to be used as a web service that is accessed via a web browser. It is also capable of running as a desktop program for a single user. The registry software stores, indexes, categories, and allows users to enter, search, retrieve, and contruct biological constructs in silico. It is also able to communicate with other Registries for data sharing and exchange.

  2. JBEI Registry

    2008-12-01

    The JBEI Registry is a software to store and manage to a database of biological parts. It is intended to be used as a web service that is accessed via a web browser. It is also capable of running as a desktop program for a single user. The registry software stores, indexes, categories, and allows users to enter, search, retrieve, and contruct biological constructs in silico. It is also able to communicate with other Registriesmore » for data sharing and exchange.« less

  3. Registries in orthopaedics.

    PubMed

    Delaunay, C

    2015-02-01

    The first nationwide orthopaedic registry was created in Sweden in 1975 to collect data on total knee arthroplasty (TKA). Since then, several countries have established registries, with varying degrees of success. Managing a registry requires time and money. Factors that contribute to successful registry management include the use of a single identifier for each patient to ensure full traceability of all procedures related to a given implant; a long-term funding source; a contemporary, rapid, Internet-based data collection method; and the collection of exhaustive data, at least for innovative implants. The effects of registries on practice patterns should be evaluated. The high cost of registries raises issues of independence and content ownership. Scandinavian countries have been maintaining orthopaedic registries for nearly four decades (since 1975). The first English-language orthopaedic registry was not created until 1998 (in New Zealand), and both the US and many European countries are still struggling to establish orthopaedic registries. To date, there are 11 registered nationwide registries on total knee and total hip replacement. The data they contain are often consistent, although contradictions occur in some cases due to major variations in cultural and market factors. The future of registries will depend on the willingness of health authorities and healthcare professionals to support the creation and maintenance of these tools. Surgeons feel that registries should serve merely to compare implants. Health authorities, in contrast, have a strong interest in practice patterns and healthcare institution performances. Striking a balance between these objectives should allow advances in registry development in the near future. PMID:25553603

  4. The virtual observatory registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Greene, G.; Le Sidaner, P.; Plante, R. L.

    2014-11-01

    In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources-typically, data and services-that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention common usage patterns and open issues as appropriate.

  5. Second generation registry framework

    PubMed Central

    2014-01-01

    Background 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. Results 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. Conclusions We introduce the

  6. Stroke Trials Registry

    MedlinePlus

    ... Trials News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions ... UT Southwestern Medical Center. Copyright © 1997-2011 - The Internet Stroke Center. All rights reserved. The information contained ...

  7. Chapter 43: Registry Clients

    NASA Astrophysics Data System (ADS)

    Greene, G.; Plante, R.

    The registry is a central component for the development of astronomical tools and applications requiring search and discovery. It contains standard descriptions for a variety of astronomical resources and services, including methods for remote invocation. Using web service technology, programmatic interfaces to the registry offer a powerful and robust mechanism for extracting specific sets of services and also a framework for combining a variety of astronomical resources into complex applications, for example, Datascope, Open SkyQuery, and WESIX. While the legacy of the NVO does not extend far back into history, we present here the current state of interfaces that client applications and tools have been built on, yet also extend the concepts to the new standard Registry Interface which will provide a uniform client interface protocol throughout the IVOA registry network. We explore this technology and discuss several implementations that exist in the current VO framework using JAVA, C#, Python, and IDL.

  8. Trauma registry reengineered.

    PubMed

    Wargo, Christina; Bolig, Nicole; Hixson, Heather; McWilliams, Nate; Rummerfield, Heather; Stratton, Elaine; Woodruff, Tracy

    2014-01-01

    A successful trauma registry balances accuracy of abstraction and timeliness of case submissions to achieve quality performance. Staffing to achieve quality performance is a challenge at times based on competitive institutional need. The aim of this performance improvement timing study was to identify trauma registry job responsibilities and redesign the responsibilities to create increased abstraction time and maintain accuracy of data abstraction. The outcome is measured by case submission rates with existing staffing and interrater reliability outcomes. PMID:25397337

  9. Are Cancer Registries Unconstitutional?

    PubMed Central

    McLaughlin, Robert H; Clarke, Christina A; Crawley, LaVera M; Glaser, Sally L

    2010-01-01

    Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of one's individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institute's SEER Program and the US Centers for Disease Control and Prevention's National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the government's possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease. PMID:20199835

  10. The PLDD registry.

    PubMed

    Chambers, R A; Botsford, J A; Fanelli, E

    1995-06-01

    The rapid acceptance of minimally invasive surgery in the United States has largely occurred without statistical proof of its superiority over traditional methods. All players in the healthcare field now see the need for valid outcome studies supporting the efficacy of new treatment techniques. Percutaneous laser disc decompression (PLDD) will gain wide acceptance only if it is statistically shown to be a safe and effective alternative treatment of a lumbar disc herniation. To that end, a central PLDD registry has been developed and implemented into clinical practice at several centers. This article reviews healthcare trends that motivated the creation of this data repository and discusses the history of its development. The currently used PLDD evaluation form is outlined and its utility is discussed. Most importantly, preliminary PLDD results and complications based on the data received are presented and analyzed. PMID:10150649

  11. Pulmonary embolism: Epidemiology and registries.

    PubMed

    Monreal, Manuel; Mahé, Isabelle; Bura-Riviere, Alessandra; Prandoni, Paolo; Verhamme, Peter; Brenner, Benjamin; Wells, Phil S; Di Micco, Pierpaolo; Bertoletti, Laurent

    2015-12-01

    Real-life data is important in understanding the needs of patients in routine clinical practice, particularly owing to the fact that almost a quarter of patients with venous thromoboembolism (VTE) have at least one exclusion criterion preventing their recruitment into randomized clinical trials. The Registro Informatizado de Enfermedad Trombo Embólica (RIETE) registry is an ongoing, international, multicentre, prospective registry of consecutive patients presenting with acute VTE. In this chapter, we summarized some of the most relevant data concerning the epidemiology of VTE in the RIETE registry. PMID:26547675

  12. Iranian Joint Registry (Iranian National Hip and Knee Arthroplasty Registry)

    PubMed Central

    Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A.; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M.; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim

    2016-01-01

    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. PMID:27200403

  13. Worldwide variability in deceased organ donation registries

    PubMed Central

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-01-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  14. Worldwide variability in deceased organ donation registries.

    PubMed

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-08-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  15. Breast and Colon Cancer Family Registries

    Cancer.gov

    The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.

  16. Registries Help Moms Measure Medication Risks

    MedlinePlus

    ... 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 ...

  17. Evaluation and implementation of public health registries.

    PubMed

    Solomon, D J; Henry, R C; Hogan, J G; Van Amburg, G H; Taylor, J

    1991-01-01

    A rapid proliferation of registries has occurred during the last 20 years. Given the long-term commitment of resources associated with registries and limited public health funding, proposals for new registries should be carefully considered before being funded. A registry is defined as a data base of identifiable persons containing a clearly defined set of health and demographic data collected for a specific public health purpose. Criteria for evaluating whether a registry is needed, feasible, or the most effective and efficient means of collecting a specific set of health data are presented. They include an evaluation of the stated purpose; a review of the function, duration, and scope of the registry; consideration of existing alternative data sources; an assessment of the practical feasibility of the registry; the likelihood of sufficient start-up and long-term funding; and an evaluation of the cost effectiveness of the registry. Creating a public health registry is a complex process. A range of technical and organizational skills is required for a registry to be successfully implemented. Eight requirements are identified as crucial for the successful development of a new registry. They include an implementation plan, adequate documentation, quality control procedures, case definition and case-finding (ascertainment) procedures, determination of data elements, data collection and processing procedures, data access policy, and a framework for dissemination of registry data and findings. PMID:1902306

  18. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  19. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  20. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  1. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  2. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded...

  3. A renal registry for Africa: first steps

    PubMed Central

    Davids, M. Razeen; Eastwood, John B.; Selwood, Neville H.; Arogundade, Fatiu A.; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A.M.; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R.; Adu, Dwomoa

    2016-01-01

    There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries. PMID:26798479

  4. New registry: National Cancer Patient Registry--Colorectal Cancer.

    PubMed

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008. PMID:19230248

  5. Client interfaces to the Virtual Observatory Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

    2015-04-01

    The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

  6. Data Standards in Diabetes Patient Registries

    PubMed Central

    Richesson, Rachel L

    2011-01-01

    Widespread adoption of electronic health records (EHRs) and expansion of patient registries present opportunities to improve patient care and population health and advance translational research. However, optimal integration of patient registries with EHR functions and aggregation of regional registries to support national or global analyses will require the use of standards. Currently, there are no standards for patient registries and no content standards for health care data collection or clinical research, including diabetes research. Data standards can facilitate new registry development by supporting reuse of well-defined data elements and data collection systems, and they can enable data aggregation for future research and discovery. This article introduces standardization topics relevant to diabetes patient registries, addresses issues related to the quality and use of registries and their integration with primary EHR data collection systems, and proposes strategies for implementation of data standards in diabetes research and management. PMID:21722563

  7. CIRSE Vascular Closure Device Registry

    SciTech Connect

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

    2011-02-15

    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 <0.5% of patients. Postdeployment bleeding occurred in 6.4%, and most these (51.5%) could be managed with light manual compression. During follow-up, other device-related complications were reported in 1.3%: seven false aneurysms, three hematoma >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.

  8. Iranian Pulmonary Arterial Hypertension Registry

    PubMed Central

    Fahimi, Fanak; Sharif-Kashani, Babak; Malek Mohammad, Majid; Saliminejad, Leila; Monjazebi, Fateme

    2015-01-01

    Background: Idiopathic pulmonary arterial hypertension (IPAH) is a fatal disorder with a prevalence of 8.6 per million. We introduce a registry website for IPAH and PAH patients ( www.IPAH.ir) for access and efficient delivery of government-aided and subsidized antihypertensive medications. Materials and Methods: The IPAH registry was opened in November 2009. Information of IPAH and PAH patients with a username and password were uploaded in the site. Data entry was possible only via the physicians and healthcare organizations via internet that were given a personalized username and password for entry. Following the patients’ profile submission, a scientific committee composed of a cardiologist and a pulmonologist who were selected by the Ministry of Health of Iran (MOH), evaluated the data. The eligibility of the patient to receive the medications was confirmed after evaluation. If the patient was eligible, 82% of the Bosentan cost was paid by MOH. Results: To date, one hundred and sixteen patients (82 females, 34 males) have been registered. The mean pulmonary artery pressure by right heart catheterization was 69.24±17 mmHg (ranging from 35 to 110 mmHg). Conclusion: The first online Iranian registry program for IPAH and PAH patients is believed to supply essential information for health care providers in the field. PMID:26528365

  9. World apheresis association--world apheresis registry.

    PubMed

    Stegmayr, B G; Ivanovich, P; Korach, J M; Rock, G; Norda, R; Ramlow, W

    2005-04-01

    In 2002 WAA decided to start a world-wide apheresis registry to gain insight into the extent of treatment, adverse events, and to facilitate contacts among centers when treatment indications are rare and experience limited. Stem cell and other blood products collections intended for therapeutic application can also be entered. The WAA planned to use the French Registry. Its translation into English has not been accomplished and the fiscal obligations for that registry has not, as yet, been determined or considered and approved by the WAA Board. From Dec 2002 the proposed registry (a merged version of the French, Canadian and Swedish registries) can be immediately implemented. We now cordially invite all centers to join that registry. Please, also inform colleagues at other centers in your country to join. E-mail and address lists of colleagues in your country who have not registered will be welcomed. The site is at: Go to World Apheresis Registry; Login code to test the Registry is: al61tms. Then apply for a specific login code for your center. We welcome you to this registry for your input of data. You will not be charged any registration fee. The registry includes a randomization system that can be used for local or multi center studies (randomization by in-center basis allows you to make your own studies). It includes a formula that increases the chance to get a more even distribution between groups also for smaller sample sizes. PMID:15784455

  10. eXtended MetaData Registry

    2006-10-25

    The purpose of the eXtended MetaData Registry (XMDR) prototype is to demonstrate the feasibility and utility of constructing an extended metadata registry, i.e., one which encompasses richer classification support, facilities for including terminologies, and better support for formal specification of semantics. The prototype registry will also serve as a reference implementation for the revised versions of ISO 11179, Parts 2 and 3 to help guide production implementations.

  11. Multicenter Breast Cancer Collaborative Registry

    PubMed Central

    Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A.; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

    2011-01-01

    The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute’s Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

  12. Multicenter breast cancer collaborative registry.

    PubMed

    Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

    2011-01-01

    The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

  13. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  14. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 50 Wildlife and Fisheries 12 2013-10-01 2013-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  15. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 1 2014-01-01 2014-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the...

  16. United States Transuranium and Uranium Registries

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  17. The importance of registries in cancer control.

    PubMed

    Leal, Yelda A; Fernández-Garrote, Leticia M; Mohar-Betancourt, Alejandro; Meneses-García, Abelardo

    2016-04-01

    Cancer is one of the major causes of morbidity and mortality in the world, with 14.1 million new cases and 8.2 million deaths annually. A marked disparity exists between developed countries and developing countries, with 57% of new cases and 65% of deaths in 2012 occurring in developing countries. This global picture can only be obtained because of data obtained from population-based cancer registries, which allow cancer estimations for different geographic areas. Our objective is to perform a review of different types of registries and their role in the control of cancer. These types of registries are lacking in developing countries. In Central and South America, only 6% of the population is included in cancer registries versus 83% in North America. It is necessary to increase the coverage of cancer registries to obtain more reliable data that will more appropriately guide control programs. PMID:27557391

  18. Clinical disease registries in acute myocardial infarction

    PubMed Central

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

    2014-01-01

    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. PMID:24976913

  19. Central registry in psychiatry: A structured review

    PubMed Central

    Prakash, Jyoti; Ramakrishnan, TS; Das, R. C.; Srivastava, K.; Mehta, Suresh; Shashikumar, R.

    2014-01-01

    Background: Central registry in psychiatry is being practiced in few countries and has been found useful in research and clinical management. Role of central registry has also expanded over the years. Materials and Methods: All accessible internet database Medline, Scopus, Embase were accessed from 1990 till date. Available data were systematically reviewed in structured manner and analyzed. Results: Central registry was found useful in epidemiological analysis, association studies, outcome studies, comorbidity studies, forensic issue, effective of medication, qualitative analysis etc., Conclusion: Central registry proves to be effective tool in quantitative and qualitative understanding of psychiatry practice. Findings of studies from central registry can be useful in modifying best practice and evidence based treatment in psychiatry. PMID:25535438

  20. Considerations Before Establishing an Environmental Health Registry

    PubMed Central

    Antao, Vinicius C.; Muravov, Oleg I.; Sapp, James; Larson, Theodore C.; Pallos, L. Laszlo; Sanchez, Marchelle E.; Williamson, G. David; Horton, D. Kevin

    2016-01-01

    Public health registries can provide valuable information when health consequences of environmental exposures are uncertain or will likely take long to develop. They can also aid research on diseases that may have environmental causes that are not completely well defined. We discuss factors to consider when deciding whether to create an environmental health registry. Those factors include public health significance, purpose and outcomes, duration and scope of data collection and availability of alternative data sources, timeliness, availability of funding and administrative capabilities, and whether the establishment of a registry can adequately address specific health concerns. We also discuss difficulties, limitations, and benefits of exposure and disease registries, based on the experience of the Agency for Toxic Substances and Disease Registry. PMID:26066912

  1. The Italian National Rare Diseases Registry

    PubMed Central

    Taruscio, Domenica; Kodra, Yllka; Ferrari, Gianluca; Vittozzi, Luciano

    2014-01-01

    Introduction Rare disease registries are a priority at European level and specific actions are being implemented by the European Commission to support their development. In Italy, a National Registry of rare diseases has been established in 2001 as a network of regional registries. The latter have gradually been established and the full coverage of the Italian territory was attained during 2011. Methods Here we describe the basic features of the National Registry of rare diseases; the activities carried out to promote consistent operations in the regional registries; and the overall quality and composition of the records collected. Results After a validation process, including removal of duplicate records, 110,841 records of patients with rare diseases, single and with group denominations, are stored in the National Registry of rare diseases. They correspond to the overall diagnoses communicated to national registry by regional registries up to 30 June 2012. The quality of the data collected by the the National Registry of rare diseases has been assessed with respect to completeness and consistency of procedures. Variables characterising case and diagnosis showed a very limited number of missing values. Records reported at least one case of 485 rare conditions. Discussion To date, the National Registry of rare diseases is a surveillance system with the main objective of producing epidemiologic evidence on rare diseases in Italy, and of supporting policy making and health services planning. Data quality still represents a limitation for any sound epidemiological estimate of rare diseases in Italy. However, improvements of the quality of collected data and the completeness of case notifications should be strengthened. PMID:24922301

  2. Southern Saskatchewan Ticagrelor Registry experience

    PubMed Central

    Dehghani, Payam; Chopra, Varun; Bell, Ali; Kelly, Sheila; Zulyniak, Lori; Booker, Jeff; Zimmermann, Rodney; Semchuk, William; Cheema, Asim N; Lavoie, Andrea J

    2014-01-01

    Background As ticagrelor enters into clinical use for acute coronary syndrome, it is important to understand patient/physician behavior in terms of appropriate use, adherence, and event rates. Methods The Southern Saskatchewan Ticagrelor Registry is a prospective, observational, multicenter cohort study that identifies consecutive patients started on ticagrelor. We aimed to evaluate both on- and off-label use, identify characteristics of patients who prematurely stop ticagrelor, and describe patient/physician behavior contributing to inappropriate stoppage of this medication. Results From April 2012 to September 2013, 227 patients were initiated on ticagrelor, with a mean age of 62.2±12.1 years. The participants were 66% men and had a mean follow up of 157.4±111.7 days. Seventy-four patients (32.4%) had off-label indications. Forty-seven patients (20.7%) prematurely stopped ticagrelor and were more likely to be older, women, nonwhite, present with shock, and complain of dyspnea. Twenty-six of the 47 patients stopped ticagrelor inappropriately because of patient nonadherence (18 patients) and physician advice (eight patients). A composite outcome event of death from vascular causes, myocardial infarction, or stroke occurred in 8.8% of the entire cohort and was more likely to occur in those older then 65 years, those presenting with cardiogenic shock, and those who prematurely stopped ticagrelor. Conclusion In this real-world registry of patients started on ticagrelor, a third have off-label indications and a fifth prematurely stop the medication. Premature discontinuation was an independent predictor of major life-threatening bleeding and increased composite event rate of death from vascular causes, myocardial infarction, or stroke. PMID:25342889

  3. Evidence and practice in spine registries

    PubMed Central

    van Hooff, Miranda L; Jacobs, Wilco C H; Willems, Paul C; Wouters, Michel W J M; de Kleuver, Marinus; Peul, Wilco C; Ostelo, Raymond W J G; Fritzell, Peter

    2015-01-01

    Background and purpose We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the “quality of spine care” from spine registries. Methods To study the impact, the literature on all spinal disorders was searched. To study methodology, the search was restricted to degenerative spinal disorders. The risk of bias in the studies included was assessed with the Newcastle-Ottawa scale. Additionally, a survey among registry representatives was performed to acquire information about the methodology and practice of existing registries. Results 4,273 unique references up to May 2014 were identified, and 1,210 were eligible for screening and assessment. No studies on impact were identified, but 34 studies were identified to study the methodology. Half of these studies (17 of the 34) were judged to have a high risk of bias. The survey identified 25 spine registries, representing 14 countries. The organization of these registries, methods used, analytical approaches, and dissemination of results are presented. Interpretation We found a lack of evidence that registries have had an impact on the quality of spine care, regardless of whether intervention was non-surgical and/or surgical. To improve the quality of evidence published with registry data, we present several recommendations. Application of these recommendations could lead to registries showing trends, monitoring the quality of spine care given, and ultimately improving the value of the care given to patients with degenerative spinal disorders. PMID:25909475

  4. [Hoogendoorn and the medical registry].

    PubMed

    van Gijn, Jan; Gijselhart, Joost P

    2012-01-01

    Dirk Hoogendoorn (1914-1990) was a solo general practitioner in the village of Wijhe (eastern part of the Netherlands) from 1941, during the time of the German occupation, until 1971. From the very beginning, he combined his practice with the recording of disease patterns. He first concentrated on infectious diseases, especially whooping cough, which was the subject of his doctoral thesis. He later set up registries in two regional hospitals. When his initiative expanded to a national organisation, he became its advisor. He nonetheless continued to produce statistics on a variety of disorders as well as on surgical procedures, even more so after his retirement. The subjects ranged from traffic accidents and tonsillectomies to the discrepancy between increased body height and the unchanging height of the tennis net, but he had the most affinity with the practice of obstetrics. He stirred up much emotion by showing that a decrease in perinatal mortality was proceeding slower in the Netherlands than in other European countries, especially by suggesting a causal relationship between this lag and the high rate of Dutch home deliveries. This debate has continued to this day. PMID:23075774

  5. Agency for Toxic Substances and Disease Registry

    MedlinePlus

    ... Mandate Congressional Testimony Board of Scientific Counselors Regional Offices Program Overview ATSDR en Español A-Z Index Multimedia Tools Special Initiatives Publications Sites Toxic Substances Health Registries ...

  6. [Taxonomy and definition of clinical registries].

    PubMed

    Costa, Giuseppe

    2015-09-01

    In order to assess the needs of knowledge about surveillance and registries in Italy and to prepare a proposal for the advancement of monitoring and recording capacity, a working group led by the Italian Association of Epidemiology and composed by the University of Turin, the Institute of Health and Agenas, carried out a survey of definitions and approaches used in public health and consulted the main Italian experts in surveillance and registries. Some of the reflections developed in this project are presented, to assess to which extent they are adaptable to the prospects the program PRIER aims to. Different aspects of the issue are analyzed: from the frame work necessary to identify information needs and how to improve the ability to measure and types of definitions and taxonomies of the registers, to the implications of the choices about what to include in registries on regulation of the instruments and investment priorities for new registries and surveillance. PMID:26418503

  7. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 3 2012-04-01 2012-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained...

  8. 20 CFR 655.34 - Electronic job registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including...

  9. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained...

  10. 20 CFR 655.34 - Electronic job registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including...

  11. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 3 2011-04-01 2011-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained...

  12. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained...

  13. 75 FR 65629 - Modification of the Annual National Registry Fee

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-26

    ... INSTITUTIONS EXAMINATION COUNCIL Modification of the Annual National Registry Fee AGENCY: Appraisal... the annual National Registry fee to $40. SUMMARY: Under authority in the Dodd-Frank Wall Street Reform... Registry fee (Registry fee) to $40 from the current $25 amount at its meeting on October 13, 2010. The...

  14. Definition, epidemiology and registries of pulmonary hypertension.

    PubMed

    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. PMID:26438630

  15. PCCR: Pancreatic Cancer Collaborative Registry.

    PubMed

    Sherman, Simon; Shats, Oleg; Ketcham, Marsha A; Anderson, Michelle A; Whitcomb, David C; Lynch, Henry T; Ghiorzo, Paola; Rubinstein, Wendy S; Sasson, Aaron R; Grizzle, William E; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E

    2011-01-01

    The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a "confederation model" that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches

  16. The Egyptian clinical trials’ registry profile: Analysis of three trial registries (International Clinical Trials Registry Platform, Pan-African Clinical Trials Registry and clinicaltrials.gov)

    PubMed Central

    Zeeneldin, Ahmed A.; Taha, Fatma M.

    2015-01-01

    Registering clinical trials (CTs) in public domains enhances transparency, increases trust in research, improves participation and safeguards against publication bias. This work was done to study the profile of clinical research in Egypt in three CT registries with different scopes: the WHO International CT Registry Platform (ICTRP), the continental Pan-African CT Registry (PACTR) and the US clinicaltrials.gov (CTGR). In March 2014, ICTRP, PACTR and CTGR were searched for clinical studies conducted in Egypt. It was found that the number of studies conducted in Egypt (percentage) was 686 (0.30%) in ICTRP, 56 (11.3%) in PACTR and 548 (0.34%) in CTGR. Most studies were performed in universities and sponsored by university/organization, industry or individual researchers. Inclusion of adults from both genders predominated. The median number of participants per study in the three registries ranged between 63 and 155. The conditions researched differed among the three registries and study purpose was mostly treatment followed by prevention. Endpoints were mostly efficacy followed by safety. Observational:Interventional studies (i.e. clinical trials) represented 15.5%:84.5% in ICTRP, 0%:100% in PACTR and 16.4%:83.6% in CTGR. Most interventions were drugs or procedures. Observational studies were mostly prospective and cohort studies. Most CTs were phase 3 and tested drugs or procedures. Parallel group assignment and random allocation predominated. Blinding was implemented in many of trials and was mostly double-blind. We conclude that CTs from Egypt in trial registries are apparently low and do not accurately reflect clinical research conducted in Egypt or its potential. Development of an Egyptian CT registry is eagerly needed. Registering all Egyptian CTs in public domains is highly recommended. PMID:26843968

  17. [Considerations on limits and profits of registries].

    PubMed

    Addis, Antonio; Costa, Enrico; De Palma, Rossana; Magrini, Nicola; Marata, Anna Maria; Martelli, Luisa; Papini, Donato; Traversa, Giuseppe

    2015-09-01

    The article collects the summary of the discussion occurred in the setting of PRIER II, in the session dedicated to the taxonomy of registries. Shown below, some specific contributions by health professionals working at the regional departments, which deal with registries, as well as the contribution on the same subject by specialists working at some pharmaceutical companies. In particular, after the presentation summarized in the article by prof. Giuseppe Costa1, the contributions, respectively by a representative of the Emilia-Romagna Region, of a health and hospital service and by the PRIER II workgroup, are following. Finally, a collective work with all participants to the working group took place to focus on all the issues considered to be crucial in defining clinical registries. At the same discussion table, institutional representatives of the regulatory national and regional branch were also invited to take into consideration the points of view of all public and private registry users, in particular in their benefits, limits and purposes. Going through the discussion on a specific check list and deepening a number of statements identified by the working group, a list of key points, essential to characterize each clinical registry, was produced. PMID:26418504

  18. The National Mental Health Registry (NMHR).

    PubMed

    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. PMID:19227671

  19. US Beryllium Case Registry through 1977

    SciTech Connect

    Sprince, N.L.; Kazemi, H.

    1980-02-01

    A synopsis of the cases reported to the Beryllium Case Registry between 1973 and 1977 is presented. As of 1973, there were 832 cases of beryllium disease entered into the Registry. In the five years since that report, 55 additional cases have been added, 40 men and 15 women. Exposures occured in the electronics and nuclear industries in the production and use of beryllium containing alloys and beryllium oxide ceramis. Pathological changes in the lung tissue are described. Cases continue to be reported in which the diagnosis was sarcoidosis until the history of beryllium exposure led to the finding of beryllium in the lung tissue or mediastinal lymph node biopsy. Data from the Registry support the fact that chronic beryllium disease is a continued occupational hazard.

  20. A registry of ankylosing spondylitis registries and prospects for global interfacing

    PubMed Central

    Reveille, John D.

    2013-01-01

    Purpose of review To review the optimal criteria and conditions for establishing a clinical registry, as well as detailing their application in a number of ankylosing spondylitis (AS) and axial spondyloarthritis (axSpA) Registries already in existence. Recent findings Recent genetic studies and studies of long-term treatment efficacy and side-effects have underscored the need for large numbers of patients, much larger than would be possible from a single center or consortium. An optimal Registry should have its aims established upfront, with appropriate governance and oversight, and inclusion and exclusion criteria for participating collaborators and subject defined. Collaborators contributing subjects to a Registry should use validated instruments for which they have been previously trained. The numerous cross-sectional and longitudinal Registries on AS and axSpA have been recently established that differ widely depending on the referral and selection issues. Summary The challenge of large-scale examinations of genetics, comorbidities, medication usage, and side-effects in spondyloarthritis underscores the need for combining data from well characterized registries of AS patients which require careful planning. There are currently many such registries available internationally, offering promise for collaborations and data pooling that can answer some of the pressing questions facing rheumatology clinicians and researchers. PMID:23656716

  1. NATIONAL CONGENITAL RUBELLA SYNDROME REGISTRY (NCRSR)

    EPA Science Inventory

    The system compiles information on all U.S. congenital rubella syndrome cases. The registry includes cases reported to CDC since 1969. Information collected includes demographic data, laboratory results, and disease symptoms. These data are used to calculate incidence rates and o...

  2. [Cancer registry of laryngectomized persons in Croatia].

    PubMed

    Pavlić, Blazenka

    2014-03-01

    Cancer poses a major problem in the population of Croatia. Owing to Professor Zivko Kulcar, who founded Cancer Registry at the Institute of Public Health in 1959, statistical data on patients with malignant cancer, including information on the entire territory of the Republic of Croatia, are available. The Act on Official Statistics (Official Gazette 103/2003) and Annual Implementation Plan regulate data recording in Cancer Registry, which is performed by the County Public Health Institutes that control the volume and quality of registration, after which the information is forwarded to the Croatian National Public Health Institute. If information and statistical data are needed for public health or scientific research purposes, one should approach Cancer Registry, having previously filled out a form for aggregated or individual information. However, when requesting information about individuals having undergone laryngectomy, such information is not available. If information about individuals having undergone laryngectomy is needed, e.g., how many of such individuals there are out there, when, where and how they are treated, or their demographic characteristics, such information unfortunately is not available. Therefore, establishment of the registry of patients who have undergone laryngectomy is proposed, which would be maintained by nurses working at ENT departments. PMID:24979893

  3. [The Austrian Stroke-Unit-Registry].

    PubMed

    Hofer, Christine; Kiechl, Stefan; Lang, Wilfried

    2008-01-01

    Since 2003 the Austrian Stroke-Unit-Registry has been administered by the Gesundheit Osterreich GmbH. A total of 26 out of the 32 existing Stroke Units in Austria take part in the project, financed by the Federal Ministry of Health and accompanied by a steering group. This paper provides a description of the objectives, organisation, methodology and the data set of the registry. The main objective of the registry is quality assurance and quality improvement of stroke-treatment in stroke units. Therefore, the participating stroke units document their cases using a web-based database. The data are discussed in the steering group and the stroke units get feedback in terms of benchmarking-graphs. The data set follows a modular approach and contains information about stroke, transport, admission to the hospital, stroke unit discharge and the 3-month follow-up. Between 2003 and 2007 about 27,000 cases (containing about 20,000 strokes) were documented in the registry. PMID:18766309

  4. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 5 2010-10-01 2010-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  5. The Savant Syndrome Registry: A Preliminary Report.

    PubMed

    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. PMID:26436185

  6. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 5 2012-10-01 2012-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  7. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 5 2013-10-01 2013-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  8. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 5 2014-10-01 2014-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  9. 42 CFR 493.1850 - Laboratory registry.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 5 2011-10-01 2011-10-01 false Laboratory registry. 493.1850 Section 493.1850... (CONTINUED) STANDARDS AND CERTIFICATION LABORATORY REQUIREMENTS Enforcement Procedures § 493.1850 Laboratory... laboratories, including the following: (1) A list of laboratories that have been convicted, under Federal...

  10. Targeted Development of Registries of Biological Parts

    PubMed Central

    Peccoud, Jean; Blauvelt, Megan F.; Cai, Yizhi; Cooper, Kristal L.; Crasta, Oswald; DeLalla, Emily C.; Evans, Clive; Folkerts, Otto; Lyons, Blair M.; Mane, Shrinivasrao P.; Shelton, Rebecca; Sweede, Matthew A.; Waldon, Sally A.

    2008-01-01

    Background The design and construction of novel biological systems by combining basic building blocks represents a dominant paradigm in synthetic biology. Creating and maintaining a database of these building blocks is a way to streamline the fabrication of complex constructs. The Registry of Standard Biological Parts (Registry) is the most advanced implementation of this idea. Methods/Principal Findings By analyzing inclusion relationships between the sequences of the Registry entries, we build a network that can be related to the Registry abstraction hierarchy. The distribution of entry reuse and complexity was extracted from this network. The collection of clones associated with the database entries was also analyzed. The plasmid inserts were amplified and sequenced. The sequences of 162 inserts could be confirmed experimentally but unexpected discrepancies have also been identified. Conclusions/Significance Organizational guidelines are proposed to help design and manage this new type of scientific resources. In particular, it appears necessary to compare the cost of ensuring the integrity of database entries and associated biological samples with their value to the users. The initial strategy that permits including any combination of parts irrespective of its potential value leads to an exponential and economically unsustainable growth that may be detrimental to the quality and long-term value of the resource to its users. PMID:18628824

  11. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 19 Customs Duties 1 2013-04-01 2013-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  12. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 19 Customs Duties 1 2014-04-01 2014-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  13. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 19 Customs Duties 1 2012-04-01 2012-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  14. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S., the... 19 Customs Duties 1 2011-04-01 2011-04-01 false Aircraft of foreign registry. 122.54 Section...

  15. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 5 2010-10-01 2010-10-01 false Registry of nurse aides. 483.156 Section 483.156... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State...

  16. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2011-07-01 2011-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  17. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  18. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2014-07-01 2014-07-01 false Visual Arts Registry. 201.25... OFFICE AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  19. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2012-07-01 2012-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  20. 37 CFR 201.25 - Visual Arts Registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 37 Patents, Trademarks, and Copyrights 1 2013-07-01 2013-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists...

  1. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... order posted on the Electronic Job Registry until the end of 50 percent of the contract period as set... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job...

  2. 19 CFR 122.54 - Aircraft of foreign registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 19 Customs Duties 1 2010-04-01 2010-04-01 false Aircraft of foreign registry. 122.54 Section 122... THE TREASURY AIR COMMERCE REGULATIONS International Traffic Permit § 122.54 Aircraft of foreign registry. (a) Application. For any commercial aircraft of foreign registry arriving in the U.S.,...

  3. Using a registry to improve immunization delivery.

    PubMed

    Kairys, Steven W; Gubernick, Ruth S; Millican, Adrienne; Adams, William G

    2006-07-01

    The NJIPSP was successful in encouraging a group of small urban practices to adopt the use of immunization registry and to transform immunization delivery from a mechanistic well-child service to a visible, monitored process of care. The project represents a unique combination of technology, public-private collaboration, and well-established quality improvement techniques. The change process involved the whole office as a team in adopting new immunization delivery roles and services. The greatest barrier to acceptance of the registry was (and continues to be) the need for manual data entry as the primary source of data collection, rather than electronic data transfer from other systems. The manual entry of data was labor intensive for participating practices and affected data measurement. Despite this barrier, however, the majority of practices substantially improved the quality of their immunization delivery practices in multiple areas. The rapid movement of primary care practices toward some form of electronic record may reduce this barrier and increase the percentage of practices willing to use a community registry. Practices that engaged collectively in the change process gained momentum from the group effort. Equally important was the public health partnership that helped identify and reduce improvement obstacles. Sustainability of practice-based immunization changes will rely, in part, on the registry's ease of use and the continued visibility of public health at the practice level. Active practice level collaboration by public health adds great value to change efforts. We believe that the best possible immunization delivery relies on both technology (registries and the EMR) and effective office systems. Projects like the NJIPSP are models for systems that integrate technology, practice change, and quality improvement, and their success has the potential to foster the spread of this approach to other primary care practices (especially in New Jersey). The

  4. Reprint of: Client interfaces to the Virtual Observatory Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

    2015-06-01

    The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

  5. Ankylosing spondylitis clinical registries: principles, practices and possibilities.

    PubMed

    Caplan, Liron; Clegg, Daniel O; Inman, Robert D

    2013-06-01

    The need for a rigorously developed longitudinal registry of patients with spondyloarthritis (SpA) is clear and urgent. Like randomized controlled trials, registries rely on a prospective, systematic protocol-driven approach to data acquisition to assess outcomes for a prescribed cohort of patients. Registries seek to capture large numbers of patients across large geographic zones and can serve as a valuable resource for patient advocacy, patient education and support, incidence and prevalence, and broad demographic profiles. Building on 3 existing registries--the Prospective Study of Outcomes in Ankylosing Spondylitis, the Program to Understand the Longterm Outcomes of Spondyloarthritis (PULSAR) and the University Health Network Spondyloarthritis Program--these registries and the Spondylitis Association of America propose to form a combined registry of North American SpA patients. The combined registry would, ideally, complement ongoing clinical goals and improve patient care. PMID:23841118

  6. METADATA REGISTRY, ISO/IEC 11179

    SciTech Connect

    Pon, R K; Buttler, D J

    2008-01-03

    ISO/IEC-11179 is an international standard that documents the standardization and registration of metadata to make data understandable and shareable. This standardization and registration allows for easier locating, retrieving, and transmitting data from disparate databases. The standard defines the how metadata are conceptually modeled and how they are shared among parties, but does not define how data is physically represented as bits and bytes. The standard consists of six parts. Part 1 provides a high-level overview of the standard and defines the basic element of a metadata registry - a data element. Part 2 defines the procedures for registering classification schemes and classifying administered items in a metadata registry (MDR). Part 3 specifies the structure of an MDR. Part 4 specifies requirements and recommendations for constructing definitions for data and metadata. Part 5 defines how administered items are named and identified. Part 6 defines how administered items are registered and assigned an identifier.

  7. A statewide cancer registry: the Pennsylvania experience.

    PubMed

    Powell, R L; Dietrich, R J

    1990-12-01

    Pennsylvania has been successful in establishing a statewide cancer registry. The success of this registry results from the efforts of many different groups. The program has benefited from strong legislation making cancer a reportable disease and assigning the responsibility of reporting to hospitals. The PCR has implemented many initiatives to ensure that the cooperation of hospitals in operating the system is maintained, and that there is sufficient knowledge among hospital personnel to ensure complete casefinding. As the amount of statewide incidence data is increased over several years, the utility of these data for program planning and epidemiologic studies will increase greatly. The establishment and ongoing operation of the PCR ensure that cancer incidence data are available in providing answers to questions such as some of those asked following the accident at Three Mile Island. PMID:10108500

  8. The Lupus Family Registry and Repository

    PubMed Central

    Rasmussen, Astrid; Sevier, Sydney; Kelly, Jennifer A.; Glenn, Stuart B.; Aberle, Teresa; Cooney, Carisa M.; Grether, Anya; James, Ellen; Ning, Jared; Tesiram, Joanne; Morrisey, Jean; Powe, Tiny; Drexel, Mark; Daniel, Wes; Namjou, Bahram; Ojwang, Joshua O.; Nguyen, Kim L.; Cavett, Joshua W.; Te, Jeannie L.; James, Judith A.; Scofield, R. Hal; Moser, Kathy; Gilkeson, Gary S.; Kamen, Diane L.; Carson, Craig W.; Quintero-del-Rio, Ana I.; Ballesteros, Maria del Carmen; Punaro, Marilynn G.; Karp, David R.; Wallace, Daniel J.; Weisman, Michael; Merrill, Joan T.; Rivera, Roberto; Petri, Michelle A.; Albert, Daniel A.; Espinoza, Luis R.; Utset, Tammy O.; Shaver, Timothy S.; Arthur, Eugene; Anaya, Juan-Manuel; Bruner, Gail R.

    2011-01-01

    The Lupus Family Registry and Repository (LFRR) was established with the goal of assembling and distributing materials and data from families with one or more living members diagnosed with SLE, in order to address SLE genetics. In the present article, we describe the problems and solutions of the registry design and biometric data gathering; the protocols implemented to guarantee data quality and protection of participant privacy and consent; and the establishment of a local and international network of collaborators. At the same time, we illustrate how the LFRR has enabled progress in lupus genetics research, answering old scientific questions while laying out new challenges in the elucidation of the biologic mechanisms that underlie disease pathogenesis. Trained staff ascertain SLE cases, unaffected family members and population-based controls, proceeding in compliance with the relevant laws and standards; participant consent and privacy are central to the LFRR’s effort. Data, DNA, serum, plasma, peripheral blood and transformed B-cell lines are collected and stored, and subject to strict quality control and safety measures. Coded data and materials derived from the registry are available for approved scientific users. The LFRR has contributed to the discovery of most of the 37 genetic associations now known to contribute to lupus through 104 publications. The LFRR contains 2618 lupus cases from 1954 pedigrees that are being studied by 76 approved users and their collaborators. The registry includes difficult to obtain populations, such as multiplex pedigrees, minority patients and affected males, and constitutes the largest collection of lupus pedigrees in the world. The LFRR is a useful resource for the discovery and characterization of genetic associations in SLE. PMID:20864496

  9. An international registry for primary ciliary dyskinesia.

    PubMed

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian; Raidt, Johanna; Wallmeier, Julia; Große-Onnebrink, Jörg; Kuehni, Claudia E; Haarman, Eric G; Leigh, Margaret W; Quittner, Alexandra L; Lucas, Jane S; Hogg, Claire; Witt, Michal; Priftis, Kostas N; Yiallouros, Panayiotis; Nielsen, Kim G; Santamaria, Francesca; Ückert, Frank; Omran, Heymut

    2016-03-01

    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 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course.To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic 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 to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. PMID:26659107

  10. Innovative Interventional and Imaging Registries: Precision Medicine in Cerebrovascular Disorders

    PubMed Central

    Liebeskind, David S.

    2015-01-01

    Background Precision medicine in cerebrovascular disorders may be greatly advanced by the use of innovative interventional and imaging-intensive registries. Registries have remained subsidiary to randomized controlled trials, yet vast opportunities exist to leverage big data in stroke. Summary This overview builds upon the rationale for innovative, imaging-intensive interventional registries as a pivotal step in realizing precision medicine for several cerebrovascular disorders. Such enhanced registries may serve as a model for expansion of our translational research pipeline to fully leverage the role of phase IV investigations. The scope and role of registries in precision medicine are considered, followed by a review on the history of stroke and interventional registries, data considerations, critiques or barriers to such initiatives, and the potential modernization of registry methods into efficient, searchable, imaging-intensive resources that simultaneously offer clinical, research and educational added value. Key Messages Recent advances in technology, informatics and endovascular stroke therapies converge to provide an exceptional opportunity for registries to catapult further progress. There is now a tremendous opportunity to deploy registries in acute stroke, intracranial atherosclerotic disease and carotid disease where other clinical trials leave questions unanswered. Unlike prior registries, imaging-intensive and modernized methods may leverage current technological capabilities around the world to efficiently address key objectives and provide added clinical, research and educational value. PMID:26600792

  11. Understanding Orthopaedic Registry Studies: A Comparison with Clinical Studies.

    PubMed

    Inacio, Maria C S; Paxton, Elizabeth W; Dillon, Mark T

    2016-01-01

    Orthopaedic registries are valuable for monitoring patient outcomes in real-world settings. Registries are useful for identifying procedure incidence and device utilization, evaluating outcomes, determining patients at risk for complications and reoperations, identifying devices in recall situations, assessing comparative effectiveness of procedures and devices, and providing data for research studies. In the present report, we describe how orthopaedic registries can be used to conduct research and how they compare with randomized controlled trials (RCTs) in regard to methodology. Using an example, a comparison of the performance of mobile and fixed bearings in total knee arthroplasty, we evaluate the differences between, and the similarities of, RCTs and registry cohort studies with regard to how they are conducted and how their findings are reported. Orthopaedic registry studies differ from RCTs in many ways and offer certain advantages. The strengths and limitations of registry cohort studies and RCTs must be understood to properly evaluate the literature. PMID:26738910

  12. [Influence of registries on the quality of care].

    PubMed

    Stengel, D; Dreinhöfer, K; Kostuj, T

    2016-06-01

    Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care. PMID:27164976

  13. An Update on the Florida State Twin Registry

    PubMed Central

    Taylor, Jeanette E.; Hart, Sara A.; Mikolajewski, Amy J.

    2012-01-01

    The Florida State Twin Registry began in 2002 through a pilot study of personality disorders and executive cognitive functioning in adult twins. Since 2006, the registry has grown substantially as part of the Learning Disability Research Center at Florida State University that recently began its second funding cycle through the National Institute of Child Health and Development. An update on the Florida State Twin Registry sample, focus, and measures is provided as well as future directions. PMID:23067863

  14. Haematuria on the Spanish Registry of Glomerulonephritis

    PubMed Central

    Yuste, Claudia; Rivera, Francisco; Moreno, Juan Antonio; López-Gómez, Juan Manuel

    2016-01-01

    Recent studies suggest a pathogenic role for glomerular haematuria among renal function. However, there is no data on the prevalence of haematuria from a large renal biopsy registry. We analysed the prevalence of gross (GH) and microscopic (mH) haematuria in 19,895 patients that underwent native renal biopsies from the Spanish Registry of Glomerulonephritis. Haematuria’s overall incidence was 63% (GH 8.6% and mH 55.1%), being more frequent in males (64.7% vs. 62.4%). GH was more prevalent in patients <18 years (21.3% vs. 7.7%). The commonest clinical presentation associated with GH was acute kidney injury (31.5%) and IgA Nephropathy (IgAN) (33.6%) was the most frequent histological finding. GH patients showed a significantly (p < 0.05) lower eGFR and proteinuria levels as compared with patients with mH and without haematuria. Moreover, mH was more prevalent in adults (56.3%). Nephrotic syndrome was the commonest clinical presentation in mH patients (32.2%) and IgAN (18.5%) the most frequent histological finding. In conclusion, haematuria, is a frequent urinalysis finding in patients underwent native renal biopsy. The most frequent histological finding in both GH and mH is IgAN. Whereas, GH is more frequent in young males with acute kidney injury, mH is commoner among adults with nephrotic syndrome. PMID:26818712

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

    PubMed

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

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  16. The Three Mile Island Population Registry.

    PubMed Central

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

    1983-01-01

    Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health. PMID:6419276

  17. Thyroid Cancer and Tumor Collaborative Registry (TCCR)

    PubMed Central

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

    2016-01-01

    A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

  18. Patient reported outcomes in hip arthroplasty registries.

    PubMed

    Paulsen, Aksel

    2014-05-01

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

  19. Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

    PubMed

    Peterson, Jennifer

    2016-01-01

    The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue

  20. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 1 2013-01-01 2013-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  1. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 1 2012-01-01 2012-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  2. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 1 2011-01-01 2011-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  3. 76 FR 28403 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ... of a National Registry of Certified Medical Examiners (National Registry), 73 FR 73129. The National... medical examiners about FMCSA's physical qualification standards. See 73 FR 73132-33. However, the Agency... Register published on January 17, 2008 (73 FR 3316) at...

  4. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 1 2014-01-01 2014-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF..., a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post...

  5. 76 FR 14366 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-16

    ... National Registry of Certified Medical Examiners (NRCME) published on December 1, 2008 (73 FR 73129). Other... Federal Register (73 FR 3316). Title: National Registry of Certified Medical Examiners (NRCME). Summary... 73 FR at 73140-42). Public Participation and Request for Comments: We encourage you to...

  6. Perceptions of Punishment: How Registered Sex Offenders View Registries

    ERIC Educational Resources Information Center

    Tewksbury, Richard; Lees, Matthew B.

    2007-01-01

    Sex offender registries (SORs) are a societal response to serious and presumably dangerous criminal offenders. Existing research on registries has focused on demographic overviews of registrants, assessments of registrants' recidivism, accuracy and completeness of listed information, and collateral consequences for registrants. The present…

  7. The National Film Registry: Acquiring Our Film Heritage.

    ERIC Educational Resources Information Center

    Ziegler, Roy A.

    The National Film Registry, which is primarily a designated list of films to be preserved by the Library of Congress, is also a valuable tool for selecting "films that are culturally, historically, and aesthetically significant." Following a brief discussion of the history and selection process of the National Film Registry, Southeast Missouri…

  8. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving...

  9. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 29 Labor 3 2010-07-01 2010-07-01 false Establishment of registry. 500.170 Section 500.170 Labor Regulations Relating to Labor (Continued) WAGE AND HOUR DIVISION, DEPARTMENT OF LABOR REGULATIONS MIGRANT AND SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment...

  10. 29 CFR 500.170 - Establishment of registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 29 Labor 3 2011-07-01 2011-07-01 false Establishment of registry. 500.170 Section 500.170 Labor Regulations Relating to Labor (Continued) WAGE AND HOUR DIVISION, DEPARTMENT OF LABOR REGULATIONS MIGRANT AND SEASONAL AGRICULTURAL WORKER PROTECTION Enforcement Central Public Registry § 500.170 Establishment...

  11. 14 CFR 47.19 - FAA Aircraft Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or...

  12. 14 CFR 49.11 - FAA Aircraft Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT RECORDING OF AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for...

  13. United States Transuranium and Uranium Registries. Annual report

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  14. The GEOSS Component and Service Registry

    NASA Astrophysics Data System (ADS)

    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

  15. [The IRIS® Registry : Purpose and perspectives. German Version].

    PubMed

    Parke Ii, D W; Lum, F; Rich, W L

    2016-06-01

    The American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) launched about 2 years ago and has already become the largest national clinical specialty data registry with nearly 50 million patient visits and over 14 million unique patients. The purpose of the registry is to support and promote continued improvement in the delivery of eye care. The perspectives that "big data" encompass are the key issues facing ophthalmology and eye care, including public health and public policy concerning disease incidence and prevalence, utilization of eye care services, natural history of disease, disease surveillance, comparative effectiveness, safety and adverse event monitoring, compliance with "best practices" and clinical guidelines, etc. The valuable real-world and current-day insights provided by the IRIS Registry and other registries like it will accelerate scientific learning and improvements in care delivery, particularly in a cost-constrained environment. PMID:27277752

  16. The Twin Research Registry at SRI International.

    PubMed

    Krasnow, Ruth E; Jack, Lisa M; Lessov-Schlaggar, Christina N; Bergen, Andrew W; Swan, Gary E

    2013-02-01

    The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same- and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples. PMID:23084148

  17. The National Exposure Registry: procedures for establishing a registry of persons environmentally exposed to hazardous substances.

    PubMed

    Burg, J R; Gist, G L

    1995-01-01

    The Agency for Toxic Substances and Disease Registry has, as mandated in Superfund legislation, established the National Exposure Registry (NER). The purpose of the NER is to assess and evaluate the potential relationship between adverse health effects and environmental exposure for an exposed population, particularly the relationship between chronic health effects and long-term, low-level chemical exposures. The NER's primary goal is to facilitate epidemiology research by establishing multiple data bases (subregistries) that contain demographic, environmental, and health information on large populations exposed to selected chemicals. The Registry data mainly serve the purpose of being hypothesis-generating rather than hypothesis-testing. The NER is currently composed of subregistries of: (1) persons exposed to volatile organic compounds (VOCs)--a subset of registrants in whom trichloroethylene (TCE) is the primary VOC exposure, but others are present (N = 4,832), a subset in whom benzene is the primary VOC exposure (N = 1,142), and a subset in whom trichloroethane (TCA) and TCE are the highest VOC exposures (N = 3,666); and (2) persons with dioxin exposure (N = 250). Chromium and radioactive substances subregistries are planned. PMID:7491637

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

    PubMed Central

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

    2013-01-01

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

  19. The Registry of Canadian Stroke Network : an evolving methodology.

    PubMed

    Fang, Jiming; Kapral, Moira K; Richards, Janice; Robertson, Annette; Stamplecoski, Melissa; Silver, Frank L

    2011-06-01

    Stroke registries can provide information on evidence-based practices and interventions, which are critical for us to understand how stroke care is delivered and how outcomes are achieved. The Registry of Canadian Stroke Network (RCSN) was initiated in 2001 and has evolved over the past decade. In the first two years, we found it extremely difficult to obtain informed consent from the patient or surrogate which led to selection biases in the registry. Subsequently (2003 onwards), under the new health privacy legislation in Ontario, Canada, the RCSN was granted special status as a "prescribed registry" which allowed us to collect data on all consecutive patients at the regional stroke centres without consent. The stroke data was encrypted and all personal contact information had been removed, therefore we could no longer conduct follow- up interviews. To obtain patient outcomes after discharge, we linked the non-consent-based registry database to population-based administrative databases to obtain information on patient mortality, readmissions, socioeconomic status, medication use and other clinical information of interest. In addition, the registry methodology was modified to include a periodic population-based audit on a sample of all stroke patients from over 150 acute hospitals across the province, in addition to continuous data collection at the 12 registry hospitals in the province. The changes in the data collection methodology developed by the RCSN can be applied to other provinces and countries. PMID:21739386

  20. Chapter 41: An Overview of the Registry Framework

    NASA Astrophysics Data System (ADS)

    Plante, R. L.; Greene, G.

    As we saw in its introduction in Chapter 7, a registry plays a key role in the discovery of data and services in the VO. Users can visit a registry portal, enter keywords or advanced query constraints to find and ultimately access a variety of data and services. Thus, we see that a registry is a kind of yellow pages for the VO that can even dial the number for you. In this chapter, we take a step back to understand exactly what a registry is, what it contains, and how it forms the basis for resource discovery. Despite its importance to the VO, a registry's destiny is to go largely unnoticed by most users, providing its services to other applications behind the scenes. Consequently, most who come to the VO as consumers do not need to understand most of the concepts presented in this chapter. Users that wish to employ advanced discovery techniques will benefit from a deeper understanding of the registry metadata model. Publishers - those who make data or services available to others through the VO - will also benefit from this closer look; not only will they see the role of registries in the publication process, they will better understand the importance of providing good descriptions of their assets so that users can make the most of them.

  1. An international registry for neurodegeneration with brain iron accumulation

    PubMed Central

    2012-01-01

    We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7 – funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community. PMID:22985983

  2. The National Anesthesia Clinical Outcomes Registry.

    PubMed

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses. PMID:26579661

  3. German Cranial Reconstruction Registry (GCRR): protocol for a prospective, multicentre, open registry

    PubMed Central

    Giese, Henrik; Sauvigny, Thomas; Sakowitz, Oliver W; Bierschneider, Michael; Güresir, Erdem; Henker, Christian; Höhne, Julius; Lindner, Dirk; Mielke, Dorothee; Pannewitz, Robert; Rohde, Veit; Scholz, Martin; Schuss, Patrick; Regelsberger, Jan

    2015-01-01

    Introduction Owing to increasing numbers of decompressive craniectomies in patients with malignant middle cerebral artery infarction, cranioplastic surgery becomes more relevant. However, the current literature mainly consists of retrospective single-centre (evidence class III) studies. This leads to a wide variability of technical approaches and clinical outcomes. To improve our knowledge about the key elements of cranioplasty, which may help optimising clinical treatment and long-term outcome, a prospective multicentre registry across Germany, Austria and Switzerland will be established. Methods All patients undergoing cranioplastic surgery in participating centres will be invited to join the registry. Technical methods, materials, medical history, adverse events and clinical outcome measures, including modified Rankin scale and EQ-5D, will be assessed at several time points. Patients will be accessible to inclusion either at initial decompressive surgery or when cranioplasty is planned. Scheduled monitoring will be carried out at time of inclusion and subsequently at time of discharge, if any readmission is necessary, and at follow-up presentation. Cosmetic results and patient satisfaction will also be assessed. Collected data will be managed and statistically analysed by an independent biometric institute. The primary endpoint will be mortality, need for operative revision and neurological status at 3 months following cranioplasty. Ethics and dissemination Ethics approval was obtained at all participating centres. The registry will provide reliable prospective evidence on surgical techniques, used materials, adverse events and functional outcome, to optimise patient treatment. We expect this study to give new insights in the treatment of skull defects and to provide a basis for future evidence-based therapy regarding cranioplastic surgery. Trial registration number This trial is indexed in the German Clinical Trials Register (DRKS-ID: DRKS00007931). The

  4. A Computer System for Processing Tumor Registry Data

    PubMed Central

    Leahey, Charles F.

    1981-01-01

    An interactive computer system for processing tumor registry data has been developed by the Washington, D.C. VA Medical Center Systems Development Group. The automated registry system replaces a manual registry, which had been implemented according to the guidelines established for Cancer Programs by the American College of Surgeons. A permanent on-line data base of patient data is maintained by a minicomputer at the medical center. A user oriented application program provides entry, edit, and retrieval of patient data in the following formats - Suspense, Master, Accession, and Follow-up registers, and in Abstract form. Data entered in any of the formats is stored in a common file, and is available as needed in any other format. The programs were written in the standard Mumps Language. Construction of the Tumor Registry application was greatly assisted by use of the File Manager, a data base file management package written in the standard Mumps language.

  5. Iliac Arteries: How Registries Can Help Improve Outcomes

    PubMed Central

    Tapping, Charles Ross; Uberoi, Raman

    2014-01-01

    There are many publications reporting excellent short and long-term results with endovascular techniques. Patients included in trials are often highly selected and may not represent real world practice. Registries are important to interventional radiologists for several reasons; they reflect prevailing practice and can be used to establish real world standards of care and safety profiles. This information allows individuals and centers to evaluate their outcomes compared with national norms. The British Iliac Angioplasty and Stenting (BIAS) registry is an example of a mature registry that has been collecting data since 2000 and has been reporting outcomes since 2001. This article discusses the evidence to support both endovascular and surgical intervention for aortoiliac occlusive disease, the role of registries, and optimal techniques for aortoiliac intervention. PMID:25435659

  6. Uses and limitations of registry and academic databases.

    PubMed

    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. PMID:20307864

  7. Using Registries to Recruit Subjects for Clinical Trials

    PubMed Central

    Tan, Meng H; Thomas, Matthew; MacEachern, Mark P

    2015-01-01

    Aim We studied the use of patient/disease registries to recruit potential subjects for prospective clinical trials - describing the number, types and major benefits of using this approach. Methods In December 2013, we conducted a focused database search in PubMed, EMBASE, and Web of Science for studies (English language only) that used registries to recruit subjects for clinical trials published in 2004-2013. Of the 233 unique citations identified, 21 used registries to recruit subjects - 10 papers and 11 abstracts. Pearling and search for subsequent full papers of the abstracts identified 4 more papers. Results Our analysis, based on these 25 citations, showed 14 are related to cancer, 3 to diabetes mellitus, 1 each to stroke, asthma, and celiac disease and 5 are disease neutral. Many types of registries (population-based cancer, quality improvement, disease-specific, web-based disease-neutral registries, local general practice registers, and national health database) are used to recruit subjects for clinical trials and uncover new knowledge. Overall, 16 registries are in the US, 4 in UK, 1 each in Canada, Spain, Australia and I in many countries. Registries can identify very large number of subjects for screening for eligibility for clinical trials, especially in very large trials, rare disease trials, and trials involving minority patients. Conclusions Registries can retrospectively identify very large numbers of potential subjects for screening for eligibility and enrollment in prospective clinical trials. This matching can lead to more timely recruitment and help solve a major problem in conducting clinical trials. PMID:25545027

  8. The growing number of hemophilia registries: Quantity vs. quality.

    PubMed

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required. PMID:25669198

  9. Portuguese National Registry on Cardiac Electrophysiology, 2013 and 2014.

    PubMed

    Cavaco, Diogo; Morgado, Francisco; Bonhorst, Daniel

    2016-01-01

    The authors present the results of the national registry of electrophysiology of the Portuguese Association for Arrhythmology, Pacing and Electrophysiology (APAPE) for 2013 and 2014. The registry is annual and voluntary, and data are collected retrospectively. Data for electrophysiological studies, ablations and cardioverter-defibrillator implantations for 2013 and 2014 are presented. Developments over the years and their implications are analyzed and discussed. PMID:27396627

  10. [What can and cannot be achieved by registries : Perspective of the registry working group of the German Network of Health Services Research].

    PubMed

    Neugebauer, E A M; Stausberg, J

    2016-06-01

    In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated. PMID:27169850

  11. Data available from birth and death registries and cancer registries in the United States

    SciTech Connect

    Wallin, B.L. |; Houser, A.R.; Merrill, D.W.; Selvin, S. |

    1994-01-01

    In the United States, cancer registries have been compiling data for decades, and state vital statistics offices have been compiling birth and death data for nearly a century. Although this information has been well used for disease surveillance and various studies, it could be better exploited by making it more readily available, reducing the duplication of effort that occurs when researchers at the private, city, county, state, and federal levels work separately on their data collection and disease investigations. This report summarizes the nationwide availability of birth and death records and cancer registry data, with particular emphasis on subcounty geographic detail, such as zip code and census tract. Birth and death data are available at the county level for the entire United States from the National Center for Health Statistics. However, county level data are inadequate for small area studies of potential environmental hazards. Hazards of current interest to the Department of Energy (DOE) include DOE facilities, nuclear power plants, and sources of electromagnetic radiation such as broadcasting towers and power lines.

  12. Acute coronary syndrome registry from four large centres in United Arab Emirates (UAE-ACS Registry)

    PubMed Central

    Yusufali, Afzalhussein M; AlMahmeed, Wael; Tabatabai, Sadeq; Rao, Kabad; Binbrek, Azan

    2010-01-01

    Objective To identify the characteristics, treatments and hospital outcomes of patients diagnosed as having acute coronary syndrome (ACS) in the United Arab Emirates (UAE). Design A 3-year prospective registry. Setting Four tertiary care hospitals in three major cities of UAE from December 2003 to December 2006. Patients 1842 eligible consecutive patients with suspected ACS. Interventions None. Main outcome measures Characteristics, treatments and in-hospital outcomes were recorded. Results The mean age was 50.8±10.0 years, and 93.1% were male. More than half (51%) had ST elevation myocardial infarction (STEMI). The smoking rate was 46.4%, and diabetes was present in 38.9%. Only a minority (17.3%) used the ambulance services. For patients with STEMI, the median symptom to hospital time was 127 (IQR 60–256) min, and the median diagnostic ECG to thrombolysis time was 28 (IQR 16–50) min. Reperfusion in STEMI was in 81.4% (64.8% thrombolysis and 16.6% primary percutaneous coronary intervention). During hospitalisation, only a minority of the patients did not receive antiplatelets, anticoagulants, beta-blockers, ACE inhibitors and statin therapy. In-hospital complications were not common in our registry cohort. In-hospital mortality was 1.68%. Conclusions ACS patients in UAE are young but have higher risk factors such as smoking and diabetes. Almost half present as STEMI. Only a minority use ambulance services.

  13. The global registry: hope for the future.

    PubMed

    Broumand, Behrooz

    2015-04-01

    In 2014, there is unanimous agreement that kidney transplant is the optimal treatment for most patients who have end-stage renal failure. Increasing organ shortage is the main obstacle that delays transplant and might even cause death while the patient is on the waiting list for kidney transplant. Many innovations have been proposed to increase the number of organs for transplant in different countries such as increasing awareness about organ donation, based on different cultures and religions. Support of religious and faith leaders exists for procurement of organs for transplant from patients with brain death or circulatory death. In the past decade, use of marginal and expandedcriteria deceased-donor transplant has been very helpful to expand the kidney donor pool. Dual kidney transplant is another procedure that may minimize the waiting list. The 1977 transport of kidneys from Minneapolis to Tehran helped change the life of a 15-year-old girl. At that time, we had the potential to change a life across 2 continents, even though our techniques were new. This should have provided the impetus to develop such a program. Presently, with progress in science, techniques, and organ shipment, it is our responsibility to reach across the globe to change the lives of many more young and adult patients waiting for kidney transplant. There are many countries in which kidneys from patients with brain or cardiac death are being discarded because of the unavailability of a transplant program in these countries, or because these countries have young transplant programs and very limited resources. If a global registry could be organized under the observation of the International Society of Nephrology and The Transplantation Society Sister Transplant Center Program, transplant teams would be able to use kidneys from patients with brain or cardiac death, with strict regulation of organ donation in accordance with World Health Organization guidelines. PMID:25894119

  14. The Pediatric Cardiomyopathy Registry: 1995–2007

    PubMed Central

    Wilkinson, James D.; Sleeper, Lynn A.; Alvarez, Jorge A.; Bublik, Natalya; Lipshultz, Steven E.

    2008-01-01

    Cardiomyopathy is a serious disorder of the heart muscle and, although rare, it is potentially devastating in children. Funded by the National Heart Lung and Blood Institute since 1994, the Pediatric Cardiomyopathy Registry (PCMR) was designed to describe the epidemiology and clinical course of selected CMs in patients 18 years old or younger and to promote the development of etiology-specific prevention and treatment strategies. Currently, data from more than 3,000 children with cardiomyopathy have been entered in the PCMR database with annual follow-up continuing until death, heart transplant, or loss-to-follow up. Using PCMR data, the incidence of cardiomyopathy in two large regions of the United States is estimated to be 1.13 cases per 100,000 children. Only 1/3 of children had a known etiology at the time of cardiomyopathy diagnosis. Diagnosis was associated with certain patient characteristics, family history, echocardiographic findings, laboratory testing, and biopsy. Greater incidence was found in boys and infants (<1 yr) for both dilated and hypertrophic cardiomyopathy (DCM, HCM) and black race for only DCM. In DCM, prognosis is worse in older children (>1yr), heart failure (HF) at diagnosis or idiopathic etiology. For HCM, worse prognosis is associated with inborn errors of metabolism or combination of HCM and another cardiomyopathy functional type. The best outcomes were observed in children presenting at age >1 yr with idiopathic HCM. PCMR data have enabled analysis of patients with cardiomyopathy and muscular dystrophy, as well as Noonan Syndrome. Currently, collaborations with the Pediatric Heart Transplant Study group and a newly established Pediatric Cardiomyopathy Biologic Specimen Repository at Texas Children’s Hospital will continue to yield important results. The PCMR is the largest and most complete multi-center prospective data resource regarding the etiology, clinical course and outcomes for children with cardiomyopathy. PMID:19343086

  15. The Toxicology Investigators Consortium Case Registry--the 2011 experience.

    PubMed

    Wiegand, Timothy J; Wax, Paul M; Schwartz, Tayler; Finkelstein, Yaron; Gorodetsky, Rachel; Brent, Jeffrey

    2012-12-01

    In 2010, the American College of Medical Toxicology established its Case Registry, the Toxicology Investigators Consortium (ToxIC). ToxIC is a prospective registry, which exclusively compiles suspected and confirmed toxic exposure cases cared for at the bedside by medical toxicologists at its participating sites. The Registry aims to fulfill two important gaps in the field: a real-time toxicosurveillance system to identify current poisoning trends and a powerful research tool in toxicology. ToxIC allows extraction of information from medical records making it the most robust multicenter database on chemical toxicities in existence. All cases seen by medical toxicologists at participating institutions were entered in a database. Information characterizing patients entered in 2011 was tabulated. 2010 data was also included so that cumulative total numbers could be described as well. The current report is a summary of the data collected in 2011 in comparison to 2010 entries and also includes cumulative data through December 31st, 2011. During 2011, 28 sites with 49 specific institutions contributed a total of 6,456 cases to the Registry. The total number of cases entered into the registry at the end of 2011 was 10,392. Emergency departments remained the most common source of consultations in 2011, accounting for 53 % of cases. The most common reason for consultation was for pharmaceutical overdoses, which occurred in 48 % of patients, including intentional (37 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,492 entries in 23 % of cases), non-opioid analgesics (1,368 cases in 21 % of cases), opioids (17 %), antidepressants (16 %), stimulants/sympathomimetics (12 %), and ethanol (8 %). N-acetylcysteine was the most commonly administered antidote during 2011, similar to 2010, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab fragments (CroFab) were

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

    PubMed

    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

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

    PubMed Central

    2014-01-01

    Background 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. Methods 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. 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. Conclusions 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

  18. Peritoneal Dialysis Registry With 2012 Survey Report.

    PubMed

    Hasegawa, Takeshi; Nakai, Shigeru; Moriishi, Misaki; Ito, Yasuhiko; Itami, Noritomo; Masakane, Ikuto; Hanafusa, Norio; Taniguchi, Masatomo; Hamano, Takayuki; Shoji, Tetsuo; Yamagata, Kunihiro; Shinoda, Toshio; Kazama, Junichiro; Watanabe, Yuzo; Shigematsu, Takashi; Marubayashi, Seiji; Morita, Osamu; Wada, Atsushi; Hashimoto, Seiji; Suzuki, Kazuyuki; Kimata, Naoki; Wakai, Kenji; Fujii, Naohiko; Ogata, Satoshi; Tsuchida, Kenji; Nishi, Hiroshi; Iseki, Kunitoshi; Tsubakihara, Yoshiharu; Nakamoto, Hidetomo

    2015-12-01

    Since 2009, the peritoneal dialysis (PD) registry survey has been carried out as part of the annual nationwide survey conducted by the Statistical Survey Committee of the Japanese Society for Dialysis Therapy with the cooperation of the Japanese Society for Peritoneal Dialysis. In this report, the current status of PD patients is presented on the basis of the results of the survey conducted at the end of 2012. The subjects were PD patients who lived in Japan and participated in the 2012 survey. Descriptive analysis of various items was performed, which included the current status of the combined use of PD and another dialysis method such as hemodialysis (HD) or hemodiafiltration (HDF), the method of exchanging dialysate, the use of an automated peritoneal dialysis (APD) machine, and the rates of peritonitis and catheter exit-site infection. From the results of the facility survey in 2012, the number of PD patients was 9514, a decrease of 128 from 2011. Among the entire dialysis patient population, 3.1% were PD patients, a decrease of 0.1%. Among the studied patients, 347 had a peritoneal catheter and underwent peritoneal lavage, 175 were started on PD in 2012 but introduced to other blood purification methods in the same year, and 1932 underwent both PD and another dialysis method such as HD or HDF. The percentage of patients who underwent PD and another dialysis method increased with PD vintage: <1 year, 4.8%; 1 to <2 years, 9.2%; 2 to <4 years, 16.3%; 4 to <8 years, 32.0%; and ≥8 years, 47.5%. The percentage of PD patients who completely manually exchanged the dialysate was 29.8%. The percentages of PD patients who used a double-bag exchange system with ultraviolet-light irradiation and those who used the same system but with a sterile connecting device were 54.7 and 13.9%, respectively. The percentage of patients on PD for <1 year using an APD machine was 43.4%, and it decreased with a PD vintage of ≥2 years. The mean rate of peritonitis was 0.22 per patient

  19. Australia and New Zealand Dialysis and Transplant Registry

    PubMed Central

    McDonald, Stephen P

    2015-01-01

    The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered include demographic details, primary renal disease, type of renal replacement therapy, process measures, and a variety of outcomes. From this data collection a number of themes of work are produced. These include production of Registry reports with an extensive range of national and regional data, a suite of quality assurance reports, key process indicator (KPI) reports, and data sets for a variety of audit and research purposes. The various types of information from the ANZDATA Registry are used in a wide variety of areas, including health services planning, safety and quality programs, and clinical research projects. PMID:26097784

  20. The German national registry for primary immunodeficiencies (PID)

    PubMed Central

    Gathmann, B; Goldacker, S; Klima, M; Belohradsky, B H; Notheis, G; Ehl, S; Ritterbusch, H; Baumann, U; Meyer-Bahlburg, A; Witte, T; Schmidt, R; Borte, M; Borte, S; Linde, R; Schubert, R; Bienemann, K; Laws, H-J; Dueckers, G; Roesler, J; Rothoeft, T; Krüger, R; Scharbatke, E C; Masjosthusmann, K; Wasmuth, J-C; Moser, O; Kaiser, P; Groß-Wieltsch, U; Classen, C F; Horneff, G; Reiser, V; Binder, N; El-Helou, S M; Klein, C; Grimbacher, B; Kindle, G

    2013-01-01

    In 2009, a federally funded clinical and research consortium (PID–NET, http://www.pid-net.org) established the first national registry for primary immunodeficiencies (PID) in Germany. The registry contains clinical and genetic information on PID patients and is set up within the framework of the existing European Database for Primary Immunodeficiencies, run by the European Society for Primary Immunodeficiencies. Following the example of other national registries, a central data entry clerk has been employed to support data entry at the participating centres. Regulations for ethics approvals have presented a major challenge for participation of individual centres and have led to a delay in data entry in some cases. Data on 630 patients, entered into the European registry between 2004 and 2009, were incorporated into the national registry. From April 2009 to March 2012, the number of contributing centres increased from seven to 21 and 738 additional patients were reported, leading to a total number of 1368 patients, of whom 1232 were alive. The age distribution of living patients differs significantly by gender, with twice as many males than females among children, but 15% more women than men in the age group 30 years and older. The diagnostic delay between onset of symptoms and diagnosis has decreased for some PID over the past 20 years, but remains particularly high at a median of 4 years in common variable immunodeficiency (CVID), the most prevalent PID. PMID:23607573

  1. European operative registry to avoid complications in operative gynecology.

    PubMed

    Putz, Andreas; Bohlin, Tonje; Rakovan, Martin; Putz, Ariane Maria; De Wilde, Rudy Leon

    2016-08-01

    The aim of this study is to determine how complications can be avoided in gynecological minimally invasive surgery in Europe. The Norwegian Gynecological Endoscopic Registry (NGER) facilitates medical research over a long duration. Can experiences from the Norwegian registry be used to develop a European registry to avoid complications? To answer this question, we used the NGER data from February 2013 until March 2015 to analyze the complications of gynecological endoscopy. The registry includes sociodemographic factors, related comorbidity, previous surgery, present procedure, and intraoperative complications. Postoperative complications were identified with a questionnaire administered 4 weeks after surgery. The risk factors leading to complications in gynecological endoscopy were found to be obesity, diabetes mellitus, heart disease, hypertension, previous surgery due to cervical carcinoma in situ, and low educational level. Regional differences in the complication rate were noted. National web-based operation registries such as the NGER can identify the risk factors for complications of gynecological endoscopic surgery and can help improve the outcome after surgery. The experience from NGER can be used to establish a European register. PMID:26805611

  2. The NIH Office of Rare Diseases Research Patient Registry Standard: A Report from the University of New Mexico’s Oculopharyngeal Muscular Dystrophy Patient Registry

    PubMed Central

    Daneshvari, Shamsi; Youssof, Sarah; Kroth, Philip J.

    2013-01-01

    Patient registries remove barriers to performing research by assembling patient cohorts and data in a systematic, efficient, and proactive manner. Consequently, registries are a valuable strategy for facilitating research and scientific discovery. Registries for rare diseases are arguably even more valuable since there is difficulty in assembling cohorts of adequate size for study. Recently, the NIH Office of Rare Diseases Research created a rare disease registry Standard to facilitate research across multiple registries. We implemented the Standard for the Oculopharyngeal Muscular Dystrophy patient registry created at the University of New Mexico Health Sciences Center. We performed a data element analysis for each Common Data Element defined in the Standard. Problems included the use of previous HL7 versions, non-structured data types, and a recent update to the Standard. Overall, the Standard is an excellent first step toward standardizing patient registries to facilitate work on broader questions and promote novel interdisciplinary collaborations. PMID:24551336

  3. Data management of an inflammatory bowel disease registry.

    PubMed

    Reed, J F; Moser, K A; Faust, L A; Mills, S

    1992-06-01

    The history and etiology of inflammatory bowel disease which is characterized by two major disease processes: ulcerative colitis and Crohn's disease, remain unknown. Research is focussing on seven major areas of genetic, environmental and physiologic factors that apparently relate to this disease. Based on this background, a population based Inflammatory Bowel Disease Registry was established in 1987 in the Lehigh Valley area of southeastern Pennsylvania. Consent forms, patient data forms and protocols for operation and implementation were developed, and databases were designed to accommodate demographic, basic history, follow-up and relative history data. The databases were correlated with an IBD registry ID number which both enabled relational analyses and ensured confidentiality of data information. The registry continues to grow, providing feedback for both continued medical research and supportive information for IBD patients and their physicians. PMID:1402437

  4. REAC/TS Radiation Accident Registry: An Overview

    SciTech Connect

    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.

  5. Through the looking glass: 21st century trauma registry innovations.

    PubMed

    Walters, Madonna R; Huehl, Susan; Fuller, Kimberly

    2006-01-01

    Trauma registries can be invaluable tools for improving quality of care and monitoring patient outcomes, but many function below their full potential. Reliance on low-tech, manual data management methods, such as the retyping of demographic information, can lead to inefficiency, increased personnel costs, and potential error. One low-cost solution is a digital interface between the medical records coding database and the trauma registry, allowing the registrar to pull demographic information and ICD-9 diagnostic and procedure codes directly from a reliable source without re-keying them. We created a batch interface for that purpose, reducing the burden of manual data entry and decreasing the time needed to complete patient records in the registry. The interface has eliminated our backlog and allowed the trauma registrar to focus on creating timely reports to track quality indicators. PMID:17052092

  6. Exploring the Usefulness of Occupational Exposure Registries for Surveillance

    PubMed Central

    Genesove, Leon; Moore, Kris; Del Bianco, Ann; Kramer, Desre

    2014-01-01

    Objective: The ongoing presence of asbestos in products used across workplaces in Canada reinforces the importance of occupational exposure surveillance. This study evaluates the usefulness of the Ontario Asbestos Workers Registry. Methods: The study includes 30,829 workers aged 15 to 80 years. Researchers reported on the data quality and analyzed the proportions of workers exposed by industry, and standardized rates by geographic areas and over time. Results: The incidence of exposure started to decrease around 1990; but about 2000 workers were still exposed annually until 2006. Results showed large geographical disparities. Unexpectedly, workers from industries other than construction reported exposure. Conclusions: The Ontario Asbestos Workers Registry is a useful but challenging source of information for the surveillance of asbestos exposure in Ontario. The registry could benefit from well-defined surveillance objectives, a clear exposure definition, systematic enforcement, regular data analyses, and results dissemination. PMID:25162835

  7. Patient-reported outcome measures in arthroplasty registries.

    PubMed

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric; Lübbeke, Anne; Denissen, Geke; Dunn, Jennifer; Lyman, Stephen; Franklin, Patricia; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Dawson, Jill

    2016-07-01

    The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use 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. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered 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 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 and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

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

    PubMed

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

    2016-09-01

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

  9. Regulatory Insight into the European Human Pluripotent Stem Cell Registry

    PubMed Central

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-01-01

    Abstract The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders. PMID:25457963

  10. RegTAP - a New API to the VO Registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.

    2015-09-01

    The Virtual Observatory (VO) Registry is a comprehensive directory of astronomical services maintained collaboratively by major data centers across the globe. Until now, the API to the Registry as used by clients and users relied on several outdated standards, and has interoperability issues with more advanced queries. With RegTAP, there is now a relational schema exposed via the VO's Table Access Protocol as implemented by many clients, and several compliant services already exist. While many users will just use UIs operating RegTAP , both advanced users and client authors will want to directly operate the API. This paper provides an overview of RegTAP.

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Jul. 1992 Revision of the KSC Toxic Substances Registry System (TSRS) Index of Material Safety Data Sheets (MSDS's) is presented. The listed MSDS's reflect product inventories and associated MSDS's which were submitted to the Toxic Substance Registry Data Base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

  12. Regulatory insight into the European human pluripotent stem cell registry.

    PubMed

    Kurtz, Andreas; Stacey, Glyn; Kidane, Luam; Seriola, Anna; Stachelscheid, Harald; Veiga, Anna

    2014-12-01

    The European pluripotent stem cell registry aims at listing qualified pluripotent stem cell (PSC) lines that are available globally together with relevant information for each cell line. Specific emphasis is being put on documenting ethical procurement of the cells and providing evidence of pluripotency. The report discusses the tasks and challenges for a global PSC registry as an instrument to develop collaboration, to access cells from diverse resources and banks, and to implement standards, and as a means to follow up usage of cells and support adherence to regulatory and scientific standards and transparency for stakeholders. PMID:25457963

  13. CMS Run Registry: Data Certification Bookkeeping and Publication System

    NASA Astrophysics Data System (ADS)

    Rapsevicius, V.; CMS DQM Group

    2011-12-01

    The Run Registry of the CMS experiment at the LHC is the central tool for the tracking of the data quality monitoring and data certification workflows and the bookkeeping of the results. It consists of a Java web application frontend which connects to an Oracle database in the backend. The current production version 2 of the Run Registry application, was deployed in the beginning of the year 2010, before the LHC data taking started, and has since then undergone a number of full release cycles. In this note we describe the architecture and the experiences from the first year of datataking.

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Oct. 1992 Revision of the KSC Toxic Substances Registry System (TSRS) Index of Material Safety Data Sheets (MSDS's) is presented. The listed MSDS's reflect product inventories and associated MSDS's which were submitted to the Toxic Substance Registry Data Base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

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

    NASA Technical Reports Server (NTRS)

    1993-01-01

    The Jan. 1993 Revision of the KSC Toxic Substances Registry System (TSRS) Index of Material Safety Data Sheets (MSDS's) is presented. The listed MSDS's reflect product inventories and associated MSDS's which were submitted to the Toxic Substance Registry Data Base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

  16. Creating an effective clinical registry for rare diseases.

    PubMed

    D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph

    2016-06-01

    The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298

  17. Creating an effective clinical registry for rare diseases

    PubMed Central

    D’Agnolo, Hedwig MA; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner

    2015-01-01

    The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298

  18. IVOA Registry Relational Schema Version 1.0

    NASA Astrophysics Data System (ADS)

    Demleitner, Markus; Harrison, Paul; Molinaro, Marco; Greene, Gretchen; Dower, Theresa; Perdikeas, Menelaos; Demleitner, Markus

    2014-12-01

    Registries provide a mechanism with which VO applications can discover and select resources -- first and foremost data and services -- that are relevant for a particular scientific problem. This specification defines an interface for searching this resource metadata based on the IVOA's TAP protocol. It specifies a set of tables that comprise a useful subset of the information contained in the registry records, as well as the table's data content in terms of the XML VOResource data model. The general design of the system is geared towards allowing easy authoring of queries.

  19. A modular approach to disease registry design: successful adoption of an internet-based rare disease registry.

    PubMed

    Bellgard, Matthew I; Macgregor, Andrew; Janon, Fred; Harvey, Adam; O'Leary, Peter; Hunter, Adam; Dawkins, Hugh

    2012-10-01

    There is a need to develop Internet-based rare disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a secure and private way. However, this functionality is currently not available in many existing systems. A new approach to the design of an Internet-based architecture for disease registries has been developed for patients with clinical and genetic data in geographical disparate locations. The system addresses issues of multiple-level access by key stakeholders, security and privacy. The system has been successfully adopted for specific rare diseases in Australia and is open source. The results of this work demonstrate that it is feasible to design an open source Internet-based disease registry system in a scalable and customizable fashion and designed to facilitate interoperability with other systems. PMID:22753342

  20. A report of the Malaysian dialysis registry of the National Renal Registry, Malaysia.

    PubMed

    Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z

    2008-09-01

    The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD

  1. 78 FR 1825 - Notice of Establishment of an Animal and Plant Health Inspection Service Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-01-09

    ... Inspection Service Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION... Service stakeholder registry. FOR FURTHER INFORMATION CONTACT: Ms. Hallie Zimmers, Advisor for State and Stakeholder Relations, Legislative and Public Affairs, APHIS, room 1147, 1400 Independence Avenue...

  2. Process produces accurate registry between circuit board prints

    NASA Technical Reports Server (NTRS)

    1966-01-01

    Tapes and quick-mount circles of contrasting colors aid in obtaining precise registry between the two circuits of two-sided printed circuit boards. The tapes and circles are mounted on opposite sides of transparent plastic film to define the conductive path and feed-through hole locations.

  3. hPSCreg—the human pluripotent stem cell registry

    PubMed Central

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  4. National Marrow Donor Program and Be The Match Registry

    MedlinePlus

    ... version of this page please turn Javascript on. Feature: Bone Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the federal government, the ...

  5. hPSCreg--the human pluripotent stem cell registry.

    PubMed

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  6. 77 FR 24103 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-20

    ... complete Privacy Act Statement, published in the Federal Register on April 11, 2000 (65 FR 19476), or you...) to establish the National Registry (73 FR 73129). The public comment period for the NPRM closed on... CMV drivers (57 FR 33276; July 28, 1992). All medical examiners were required to be...

  7. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 22 Foreign Relations 1 2011-04-01 2011-04-01 false Operation of the Complaint Registry. 96.70 Section 96.70 Foreign Relations DEPARTMENT OF STATE LEGAL AND RELATED SERVICES ACCREDITATION OF AGENCIES AND APPROVAL OF PERSONS UNDER THE INTERCOUNTRY ADOPTION ACT OF 2000 (IAA) Oversight Through Review of Complaints § 96.70 Operation of the...

  8. 22 CFR 96.70 - Operation of the Complaint Registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Operation of the Complaint Registry. 96.70 Section 96.70 Foreign Relations DEPARTMENT OF STATE LEGAL AND RELATED SERVICES ACCREDITATION OF AGENCIES AND APPROVAL OF PERSONS UNDER THE INTERCOUNTRY ADOPTION ACT OF 2000 (IAA) Oversight Through Review of Complaints § 96.70 Operation of the...

  9. Toxic Substances Registry System Index of Material Safety Data Sheets

    NASA Technical Reports Server (NTRS)

    1997-01-01

    The July 1997 revision of the Index of Material Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

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

    PubMed

    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

  11. BioSWR – Semantic Web Services Registry for Bioinformatics

    PubMed Central

    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

  12. Clinical Cancer Registries - Are They Up for Health Services Research?

    PubMed

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Schramm, Wendelin

    2016-01-01

    Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR. PMID:27577380

  13. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products... ENC ® cells were provided to each customer; (ii) Edition number of each cell provided; (iii) Updates provided for each cell; (iv) Method of distribution for each customer. (2) The registry may also...

  14. Retinoblastoma Registry report--Hospital Kuala Lumpur experience.

    PubMed

    Jamalia, R; Sunder, R; Alagaratnam, J; Goh, P P

    2010-06-01

    Retinoblastoma is a childhood ocular cancer. The aim of this paper is to describe the clinical and epidemiological characteristics of patients with retinoblastoma in a major paediatric ophthalmology center in the country. Retrospective information was collected through the retinoblastoma registry. Late presentation with advanced staging is a major problem. PMID:21488473

  15. Chemical Abstracts Service Chemical Registry System: History, Scope, and Impacts.

    ERIC Educational Resources Information Center

    Weisgerber, David W.

    1997-01-01

    Describes the history, scope, and applications of the Chemical Abstracts Service Chemical Registry System, a computerized database that uniquely identifies chemical substances on the basis of their molecular structures. Explains searching the system is and discusses its use as an international resource. (66 references) (Author/LRW)

  16. Fifty years of ERA-EDTA Registry—a registry in transition

    PubMed Central

    Jager, Kitty J; Wanner, Christoph

    2015-01-01

    In 1964 the ERA-EDTA Registry was started as one of the first renal registries in the world. This meeting report describes how this European registry has developed over the 50 years of its existence. Where the first report presented patient numbers, nowadays the Registry acts as a platform for collaborative renal research in Europe. In addition, it provides training in epidemiology methods to nephrologists and other renal researchers. PMID:26097780

  17. The Toxicology Investigators Consortium Case Registry--the 2012 experience.

    PubMed

    Wiegand, Timothy; Wax, Paul; Smith, Eric; Hart, Katherine; Brent, Jeffrey

    2013-12-01

    In 2010, the American College of Medical Toxicology (ACMT) established its Case Registry, the Toxicology Investigators Consortium (ToxIC). All cases are entered prospectively and include only suspected and confirmed toxic exposures cared for at the bedside by board-certified or board-eligible medical toxicologists at its participating sites. The primary aims of establishing this Registry include the development of a realtime toxico-surveillance system in order to identify and describe current or evolving trends in poisoning and to develop a research tool in toxicology. ToxIC allows for extraction of data from medical records from multiple sites across a national and international network. All cases seen by medical toxicologists at participating institutions were entered into the database. Information characterizing patients entered in 2012 was tabulated and data from the previous years including 2010 and 2011 were included so that cumulative numbers and trends could be described as well. The current report includes data through December 31st, 2012. During 2012, 38 sites with 68 specific institutions contributed a total of 7,269 cases to the Registry. The total number of cases entered into the Registry at the end of 2012 was 17,681. Emergency departments remained the most common source of consultation in 2012, accounting for 61 % of cases. The most common reason for consultation was for pharmaceutical overdose, which occurred in 52 % of patients including intentional (41 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,422 entries in 13 % of cases) non-opioid analgesics (1,295 entries in 12 % of cases), opioids (1,086 entries in 10 % of cases) and antidepressants (1,039 entries in 10 % of cases). N-acetylcysteine (NAC) was the most common antidote administered in 2012, as it was in previous years, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab

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

    ERIC Educational Resources Information Center

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

    2013-01-01

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

  19. 77 FR 69548 - Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-11-19

    ... AFFAIRS Proposed Information Collection (Agent Orange Registry Code Sheet); Comment Request AGENCY...-to-date Agent Orange Registry. DATES: Written comments and recommendations on the proposed collection... information technology. Title: Agent Orange Registry Code Sheet, VA Form 10-9009. OMB Control Number:...

  20. 78 FR 54956 - Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-09-06

    ... AFFAIRS Agency Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment....rennie@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry Airborne Hazard Self-Assessment Questionnaire.'' SUPPLEMENTARY INFORMATION: Title: Open Burn Pit Registry Airborne Hazard...

  1. The Emerging Role of Adoption Reunion Registries: Adoptee and Birthparent Views.

    ERIC Educational Resources Information Center

    Fischer, Robert L.

    2002-01-01

    The State of Georgia Adoption Reunion Registry assists adoptees in searching for birthparents and biological siblings, and provides referral to support services. Responses to a mail-in survey of 45 adoptees and 46 birthparents, all users of the Georgia registry, indicated high levels of satisfaction with the registry's services. Birthparents…

  2. The Euro-VO Registry, Re-engineering the Back-end

    NASA Astrophysics Data System (ADS)

    Arviset, C.; Perdikeas, M.; Osuna, P.; Gonzalez, J.

    2015-09-01

    The Euro-VO Registry, located, developed and operated at ESAC, is one of the full searchable registries available worldwide, gathering information about all VO-compliant resources. The Euro-VO Registry serves as a registration point for European - and other countries- VO actors and data centres wishing to publish VO services. It harvests other registries to ensure its completeness so VO applications developers and VO users can use it to discover all VO resources, from Europe and from all other VO projects. The Euro-VO Registry provides as well a harvesting interface to other registries in the world to make sure the European VO services are also included in all other worldwide full registries. In particular, the new Euro-VO registry will be supporting the new RegTAP search interface for the relational registry allowing arbitrary ADQL queries against its contents over a compliant TAP service. The recently obsolete (for future developments) SOAP-based legacy search interface will also be supported for backwards compatibility purposes. Furthermore, in the context of the IVOA, some quality control and curation procedures for the registry resources are being defined. The Euro-VO Registry implements these procedures to ensure the high quality of the VO resources it references. This paper gives an overview of the recent development of the new Euro-VO Registry, together with its new curation facilities, both of which are being performed under a contract awarded to Neuropublic, under ESA special initiative to Greece.

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

    PubMed Central

    Ajami, Sima; Askarianzadeh, Mahdi; Mortazavi, Mojgan

    2015-01-01

    Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR) characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients’ characteristics as well as risk factors which eventually leads to making better decisions. PMID:26109970

  4. Inception of a national multidisciplinary registry for stereotactic radiosurgery.

    PubMed

    Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

    2016-01-01

    Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway. PMID

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

    PubMed

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

    2015-06-01

    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 clinical care. The cohort was assembled in the early 1960s with identification of approximately 16,000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI. PMID:25183748

  6. Linking cancer registry and hospital discharge data for treatment surveillance.

    PubMed

    Lin, Ge; Ma, Jihyun; Zhang, Lei; Qu, Ming

    2013-06-01

    Cancer registry data often lack complete chemotherapy and radiation therapy information. To conduct treatment disparity surveillance, we linked 2005-2009 Nebraska Cancer Registry data with Nebraska hospital discharge data. Due to the high quality of both datasets and the proposed linkage procedure, we had a linkage rate of 97 percent. We demonstrate the utilization of the linked dataset in case finding, treatment update, and treatment surveillance. The results show that the linked dataset is likely to identify up to 5 percent of potential missed cases. We investigated the use of radiation therapy in treating colorectal and breast cancers as case-finding examples. The linked dataset found 12 percent and 14 percent more treatment cases for colorectal and breast cancer patients, respectively. PMID:23715212

  7. The Florida State Twin Registry: research aims and design.

    PubMed

    Taylor, Jeanette E; James, Lisa M; Reeves, Mark D; Bobadilla, Leonardo

    2006-12-01

    Relatively little is known about the relationship of most personality disorders to executive cognitive functioning despite their associations with frontal cortex activity. Research on genetic influence is lacking for most personality disorders, and research on genetic influences associated with executive cognitive functioning is sparse and mixed. The Florida State Twin Registry was created to conduct a pilot twin study aimed at examining genetic influence on personality disorders and executive cognitive functioning. Measures included structured clinical interviews for symptoms and diagnoses of personality disorders (borderline, histrionic, narcissistic, antisocial, obsessive-compulsive, avoidant, and dependent), depression, substance abuse/dependence, anxiety disorders, and eating disorders. The Wisconsin Card Sorting Test and the Stroop Color-Word Test were administered to assess executive cognitive functioning. Self-report questionnaires were included to assess maladaptive personality traits. Data sharing and future directions for growing the Florida State Twin Registry are discussed. PMID:17254436

  8. A preventive registry for hereditary nonpolyposis colorectal cancer.

    PubMed

    Madlensky, L; Berk, T C; Bapat, B V; McLeod, R S; Couture, J; Baron, D; Hiruki, T; Redston, M; Cohen, Z; Gallinger, S

    1995-07-01

    Hereditary nonpolyposis colorectal cancer (HNPCC) is a genetic disorder characterized by a strong family history of colorectal and extracolonic cancers, usually at a young age. This article presents a new provincial service for families with HNPCC. The Steve Atanas Stavro Familial Gastrointestinal Cancer Registry at Mount Sinai Hospital is accruing patients that meet a set of criteria establishing a putative diagnosis of HNPCC. The objectives of the Registry are to develop and assess patient pedigrees, to coordinate screening procedures for at-risk persons, to maintain a prospective database of patient information, to provide education and support for families and to contribute to research. To date, surgeons and patients are the most common referral sources, while oncologists and geneticists are the least common. The ultimate goal of the HNPCC service is the secondary prevention of cancer and a corresponding decrease in mortality for HNPCC family members. PMID:8853507

  9. Tracking Diabetes: New York City's A1C Registry

    PubMed Central

    Chamany, Shadi; Silver, Lynn D; Bassett, Mary T; Driver, Cynthia R; Berger, Diana K; Neuhaus, Charlotte E; Kumar, Namrata; Frieden, Thomas R

    2009-01-01

    Context: In December 2005, in characterizing diabetes as an epidemic, the New York City Board of Health mandated the laboratory reporting of hemoglobin A1C laboratory test results. This mandate established the United States’ first population-based registry to track the level of blood sugar control in people with diabetes. But mandatory A1C reporting has provoked debate regarding the role of public health agencies in the control of noncommunicable diseases and, more specifically, both privacy and the doctor-patient relationship. Methods: This article reviews the rationale for adopting the rule requiring the reporting of A1C test results, experience with its implementation, and criticisms raised in the context of the history of public health practice. Findings: For many decades, public health agencies have used identifiable information collected through mandatory laboratory reporting to monitor the population's health and develop programs for the control of communicable and noncommunicable diseases. The registry program sends quarterly patient rosters stratified by A1C level to more than one thousand medical providers, and it also sends letters, on the provider's letterhead whenever possible, to patients at risk of diabetes complications (A1C level >9 percent), advising medical follow-up. The activities of the registry program are similar to those of programs for other reportable conditions and constitute a joint effort between a governmental public health agency and medical providers to improve patients’ health outcomes. Conclusions: Mandatory reporting has proven successful in helping combat other major epidemics. New York City's A1C Registry activities combine both traditional and novel public health approaches to reduce the burden of an epidemic chronic disease, diabetes. Despite criticism that mandatory reporting compromises individuals’ right to privacy without clear benefit, the early feedback has been positive and suggests that the benefits will

  10. Patient-reported outcome measures in arthroplasty registries

    PubMed Central

    Bohm, Eric; Franklin, Patricia; Lyman, Stephen; Denissen, Geke; Dawson, Jill; Dunn, Jennifer; Eresian Chenok, Kate; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Lübbeke, Anne

    2016-01-01

    Abstract — 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 question (“During the past 4 weeks, how would you describe the pain you usually have in your [right/left] [hip/knee]?”; response: none, very mild, mild, moderate, or severe) and a single-item satisfaction outcome (“How satisfied are you with your [right/left] [hip/knee] replacement?”; response: very unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals, frequency of response, missing values, and factors in establishing a PROMs registry program. The Working Group recommends including age, sex, diagnosis at joint, general health status preoperatively, and joint pain and function score in case-mix adjustment models. Interpretation and statistical analysis 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 and 1 year after surgery, a threshold of 60% for acceptable frequency of response, documentation of non-responders, and documentation of incomplete or

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

    NASA Technical Reports Server (NTRS)

    1991-01-01

    The Material Safety Data Sheets (MSDSs) listed in this index reflect product inventories and associated MSDSs which have been submitted to the Toxic Substance Registry database maintained by the Base Operations Contractor at the Kennedy Space Center. The purpose of this index is to provide a means to access information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at the Kennedy Space Center.

  12. Using Registries to Identify Adverse Events in Rheumatic Diseases

    PubMed Central

    Lionetti, Geraldina; Kimura, Yukiko; Schanberg, Laura E.; Beukelman, Timothy; Wallace, Carol A.; Ilowite, Norman T.; Winsor, Jane; Fox, Kathleen; Natter, Marc; Sundy, John S.; Brodsky, Eric; Curtis, Jeffrey R.; Del Gaizo, Vincent; Iyasu, Solomon; Jahreis, Angelika; Meeker-O’Connell, Ann; Mittleman, Barbara B.; Murphy, Bernard M.; Peterson, Eric D.; Raymond, Sandra C.; Setoguchi, Soko; Siegel, Jeffrey N.; Sobel, Rachel E.; Solomon, Daniel; Southwood, Taunton R.; Vesely, Richard; White, Patience H.; Wulffraat, Nico M.; Sandborg, Christy I.

    2013-01-01

    The proven effectiveness of biologics and other immunomodulatory products in inflammatory rheumatic diseases has resulted in their widespread use as well as reports of potential short- and long-term complications such as infection and malignancy. These complications are especially worrisome in children who often have serial exposures to multiple immunomodulatory products. Post-marketing surveillance of immunomodulatory products in juvenile idiopathic arthritis (JIA) and pediatric systemic lupus erythematosus is currently based on product-specific registries and passive surveillance, which may not accurately reflect the safety risks for children owing to low numbers, poor long-term retention, and inadequate comparators. In collaboration with the US Food and Drug Administration (FDA), patient and family advocacy groups, biopharmaceutical industry representatives and other stakeholders, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Duke Clinical Research Institute (DCRI) have developed a novel pharmacosurveillance model (CARRA Consolidated Safety Registry [CoRe]) based on a multicenter longitudinal pediatric rheumatic diseases registry with over 8000 participants. The existing CARRA infrastructure provides access to much larger numbers of subjects than is feasible in single-product registries. Enrollment regardless of medication exposure allows more accurate detection and evaluation of safety signals. Flexibility built into the model allows the addition of specific data elements and safety outcomes, and designation of appropriate disease comparator groups relevant to each product, fulfilling post-marketing requirements and commitments. The proposed model can be applied to other pediatric and adult diseases, potentially transforming the paradigm of pharmacosurveillance in response to the growing public mandate for rigorous post-marketing safety monitoring. PMID:24144710

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

    NASA Technical Reports Server (NTRS)

    1992-01-01

    The Material Safety Data Sheets (MSDSs) listed reflect product inventories and associated MSDSs which were submitted to the Toxic Substance Registry data base maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of NASA Kennedy. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at NASA Kennedy. Indices are provided for manufacturers, trademarks, and stock numbers.

  14. Spectral line-diode registry effects with photodiode array detectors

    SciTech Connect

    Winge, R.K.; Fassel, V.A.; Eckels, D.E.

    1986-05-01

    A limitation of photodiode array detectors for spectroscopic intensity measurements relates to the spacing of the diodes and the errors generated when a spectral line is not in exact registry with the diode or diodes from which its intensity is being measured. These misregistry intensity errors, which may be as high as 25 to 30%, are documented for a range of spectral bandwidths and for single diode (pixel) intensities and multiple diode summations of intensities.

  15. [The Italian ArthroPlasty Registry: a model to export?].

    PubMed

    Torre, Marina; Romanini, Emilio

    2016-05-01

    Medical devices (MD) registries are essentials to evaluate outcomes. They represent a key tool to support market surveillance and vigilance, being critical to identify and characterize the implants, assess their performance and trace patients in case of recall. Therefore, the recent "Proposal for a Regulation of the European Parliament and of the Council on medical devices" asked both the Commission and the Member States to take all appropriate measures to encourage the establishment of registers for specific types of devices, setting common principles to collect comparable information. In Italy more than 170.000 joint replacements were performed in 2013 in over 750 hospitals. Experiences at international level and in some Italian regions show that data from registries are crucial to define the best approach to joint replacement surgery. Results from registries can lead to changes in clinical practice, adopting the best available evidence and avoiding choices associated with poorer outcomes. The Italian Arthroplasty Registry project (RIAP) started in 2006 funded by the DG of Medical Devices and Pharmaceutical Service of the Ministry of Health. Data collection uses Hospital Discharge Records integrated by additional information essential to describe the procedure and identify the implants. As soon as the new European Regulation is approved, a Unique Device Identifier will be assigned to every device. Lacking this information, device identification is currently possible by browsing the RIAP MD Library that includes about 55,000 records and is constantly updated by 60 Manufacturers. The model designed within the RIAP project is simple and might be applied for every implanted device when the additional minimum dataset is defined. PMID:27311121

  16. Toxic Substances Registry System. Index of Material Safety Data Sheets

    NASA Technical Reports Server (NTRS)

    1994-01-01

    The October 1994 revision of the KSC Toxic Substances Registry System (TSRS) Material Safety Data Sheets (MSD's) is presented. The listed MSD's which were submitted to the TSRS are maintained by the Base Operations Contractors of the Biomedical Operations and Research Office of KSC. The purpose of the index is to provide a means of accessing information on the hazards associated with the toxic and otherwise hazardous chemicals stored and used at KSC. Indices are provided for manufacturers, trademarks, and stock numbers.

  17. Disease Registries on the Nationwide Health Information Network

    PubMed Central

    Russler, Daniel

    2011-01-01

    Background: Donation by individuals of their protected health information (PHI) for evidence-based research potentially benefits all individuals with disease through improved understandings of disease patterns. In the future, a better understanding of how disease features combine into unique patterns of disease will generate new disease classifications, supporting greater specificity in health management techniques. However, without large numbers of people who donate their PHI to disease registries designed for research, it is difficult for researchers to discover the existence of complex patterns or to create more specific evidence-based management techniques. In order to identify new opportunities in disease registry design, an analysis of the current stage of maturity of the newly created U.S. Nationwide Health Information Network (NwHIN) related to large-scale consumer donation of PHI is presented. Methods: Utilizing a use–case analysis methodology, the consumer-centric designs of the policies and technologies created for the NwHIN were examined for the potential to support consumer donations of PHI to research. Results: The NwHIN design has placed the enforcement point for the policy-based release of PHI over the Internet into a specialized gateway accessible to consumer authorization. However, current NwHIN policies leave the final decision regarding release of PHI for research to the health care providers rather than to the consumers themselves. Conclusions: Should disease registries designed for research be established on the NwHIN, consumers might then directly authorize the donation of their PHI to these disease registries. However, under current NwHIN policies, consumer authorization does not guarantee release of PHI by health providers. PMID:21722569

  18. 75 FR 38145 - Announcing the New National Electronic Job Registry for Use in the H-2A Temporary Agricultural...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-01

    ... Employment and Training Administration Announcing the New National Electronic Job Registry for Use in the H... that the National Electronic Job Registry (job registry) in which H-2A job orders will be posted and... the job registry, please contact the iCERT System Team, Office of Foreign Labor ] Certification...

  19. VTE Registry: What Can Be Learned from RIETE?

    PubMed Central

    Tzoran, Inna; Brenner, Benjamin; Papadakis, Manolis; Di Micco, Pierpaolo; Monreal, Manuel

    2014-01-01

    The Registro Informatizado de Enfermedad TromboEmbólica (RIETE Registry) is an ongoing, international, prospective registry of consecutive patients with acute venous thromboembolism (VTE) designed to gather and analyze data on treatment patterns and outcomes in patients with acute VTE. It started in Spain in 2001, and 6 years later the database was translated into English with the aim to expand the Registry to other countries. In contrast to randomized controlled trials, there is no imposed experimental intervention: the management is determined solely by physicians. Thus, it provides data on patients with VTE in a real-world situation with an unselected patient population. Data from RIETE are hypothesis-generating and provide feedback from real-world clinical situations. So far, we learned about the natural history of VTE in patients with relative or absolute contraindications to anticoagulant therapy. We also learned interesting aspects on the natural history of VTE, and we built a number of prognostic scores to identify VTE patients at low, moderate, or high risk for adverse outcome. PMID:25386353

  20. Online registry for mutations in hereditary amyloidosis including nomenclature recommendations.

    PubMed

    Rowczenio, Dorota M; Noor, Islam; Gillmore, Julian D; Lachmann, Helen J; Whelan, Carol; Hawkins, Philip N; Obici, Laura; Westermark, Per; Grateau, Gilles; Wechalekar, Ashutosh D

    2014-09-01

    Hereditary systemic amyloidosis comprises a group of rare monogenic diseases inherited in an autosomal dominant fashion. It is associated with mutations in genes encoding eight different proteins, including transthyretin, apolipoprotein AI, apolipoprotein AII, lysozyme, fibrinogen A α-chain, cystatin C, gelsolin and beta-2-microglobulin. With support from the EU FP6 EURAMY project we have designed an online registry of genes and mutations in hereditary amyloidosis including their associated clinical phenotypes, with a view to having a single free online portal for the collection and distribution of this information. Users can search the registry by either mutation, phenotype or authors who have published or submitted mutations. It provides a submission form for reporting newly identified mutations. We also wanted to introduce nomenclature which complies with recommendations set out by Human Genome Variation Society and HUGO Gene Nomenclature Committee for description of new and known genetic variants. We hope this registry would be a useful and convenient tool for the medical and scientific community. PMID:25044787

  1. Military Orthopaedic Trauma Registry: Quality Data Now Available.

    PubMed

    Rivera, Jessica C; Greer, Renee M; Wenke, Joseph C; Ficke, James R; Johnson, Anthony E

    2016-01-01

    The Military Orthopaedic Trauma Registry (MOTR) orginally began as part of the Department of Defense Trauma Registry (DoDTR) and became a live registry in 2013. As a quality improvement process, this study examined MOTR data for 20 female amputees compared with DoDTR data. The DoDTR provided diagnosis and procedure codes as a list but no details. The MOTR provided additional data, including specific limb, fracture classifications, and associated injuries per limb. The MOTR allowed for construction of a treatment time line for each limb, including number and timing of debridements, antibiotics, and implant types. Orthopaedic-specific complications were also coded more frequently in the MOTR and clearly identified with a specific injury and treatment. During initial quality control checks, the MOTR provides a greater volume and granularity of detail for orthopaedic-specific injury and treatment information, indicating that the MOTR is on track to provide a valuable repository for data-driven orthopaedic management of combat injury. PMID:27518292

  2. Comparability, Diagnostic Validity and Completeness of Nigerian Cancer Registries

    PubMed Central

    al-Haddad, B.J.S.; Jedy-Agba, Elima; Oga, Emmanuel; Ezeome, E.R.; Obiorah, Christopher C.; Okobia, Michael; Ogunbiyi, J. Olufemi; Ukah, Cornelius Ozobia; Omonisi, Abidemi; Nwofor, A.M.E.; Igbinoba, Festus; Adebamowo, Clement

    2015-01-01

    Background Like many countries in Africa, Nigeria is improving the quality and coverage of its cancer surveillance. This work is essential to address this growing category of chronic diseases, but is made difficult by economic, geographic and other challenges. Purpose To evaluate the completeness, comparability and diagnostic validity of Nigeria’s cancer registries. Methods Completeness was measured using children’s age-specific incidence (ASI) and an established metric based on a modified Poisson distribution with regional comparisons. We used a registry questionnaire as well as percentages of death-certificate-only cases, morphologically verified cases, and case registration errors to examine comparability and diagnostic validity. Results Among the children’s results, we found that over half of all cancers were non-Hodgkin lymphoma. There was also evidence of incompleteness. Considering the regional completeness comparisons, we found potential evidence of cancer-specific general incompleteness as well as what appears to be incompleteness due to inability to diagnose specific cancers. We found that registration was generally comparable, with some exceptions. Since autopsies are not common across Nigeria, coding for both them and death-certificate-only cases was also rare. With one exception, registries in our study had high rates of morphological verification of female breast, cervical and prostate cancers. Conclusions Nigeria’s registration procedures were generally comparable to each other and to international standards, and we found high rates of morphological verification, suggesting high diagnostic validity. There was, however, evidence of incompleteness. PMID:25863982

  3. The toxicology investigators consortium case registry-the 2013 experience.

    PubMed

    Rhyee, Sean H; Farrugia, Lynn; Wiegand, Timothy; Smith, Eric A; Wax, Paul M; Brent, Jeffrey

    2014-12-01

    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. This report summarizes the Registry data for 2013. A query of the ToxIC Registry was carried out for the dates of January 1 through December 31, 2013. Specific data reviewed for analysis included demographics (age, gender), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms and clinical findings, and treatment. A total of 8,598 cases were entered into the Registry in 2013. Females accounted for 49.2 % of cases, males for 47.7 %, and gender was not reported in 3.1 %. The majority of patients (63.4 %) were adults between the ages of 19 and 65 years. There were 93 fatalities (1.1 %). Most referrals for medical toxicology consultation originated from the emergency department (59.7 %) or inpatient services (16.7 %). Exposures to pharmaceutical products (intentional and unintentional) made up 50.0 % of cases. Illicit drug abuse (8.0 %) and adverse drug reactions (ADRs) (4.8 %) were the next most frequent reasons for consultation. Similar to past years, nonopioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Symptoms or clinical findings were documented in 71.1 % of patients. Of all cases, 54.6 % required some form of medical treatment (antidotes, antivenom, chelation, specific types of supportive care). This report serves as a comprehensive survey of medical toxicology practice within participating institutions. Prior trends continued to apply this year and indicate analgesic (opioid and nonopioid), sedative-hypnotic/muscle relaxant agents, illicit drug use, and ADRs continue to be major toxicological problems. Cases requiring medical toxicology consultation in 2013 predominantly involved pharmaceuticals and illicit drugs. Reasons for these drug

  4. TSOC-HFrEF Registry: A Registry of Hospitalized Patients with Decompensated Systolic Heart Failure: Description of Population and Management

    PubMed Central

    Wang, Chun-Chieh; Chang, Hung-Yu; Yin, Wei-Hsian; Wu, Yen-Wen; Chu, Pao-Hsien; Wu, Chih-Cheng; Hsu, Chih-Hsin; Wen, Ming-Shien; Voon, Wen-Chol; Lin, Wei-Shiang; Huang, Jin-Long; Chen, Shyh-Ming; Yang, Ning-I; Chang, Heng-Chia; Chang, Kuan-Cheng; Sung, Shih-Hsien; Shyu, Kou-Gi; Lin, Jiunn-Lee; Mar, Guang-Yuan; Chan, Kuei-Chuan; Kuo, Jen-Yuan; Wang, Ji-Hung; Chen, Zhih-Cherng; Tseng, Wei-Kung; Cherng, Wen-Jin

    2016-01-01

    Introduction Heart failure (HF) is a medical condition with a rapidly increasing incidence both in Taiwan and worldwide. The objective of the TSOC-HFrEF registry was to assess epidemiology, etiology, clinical management, and outcomes in a large sample of hospitalized patients presenting with acute decompensated systolic HF. Methods The TSOC-HFrEF registry was a prospective, multicenter, observational survey of patients presenting to 21 medical centers or teaching hospitals in Taiwan. Hospitalized patients with either acute new-onset HF or acute decompensation of chronic HFrEF were enrolled. Data including demographic characteristics, medical history, primary etiology of HF, precipitating factors for HF hospitalization, presenting symptoms and signs, diagnostic and treatment procedures, in-hospital mortality, length of stay, and discharge medications, were collected and analyzed. Results A total of 1509 patients were enrolled into the registry by the end of October 2014, with a mean age of 64 years (72% were male). Ischemic cardiomyopathy and dilated cardiomyopathy were diagnosed in 44% and 33% of patients, respectively. Coronary artery disease, hypertension, diabetes, and chronic renal insufficiency were the common comorbid conditions. Acute coronary syndrome, non-compliant to treatment, and concurrent infection were the major precipitating factors for acute decompensation. The median length of hospital stay was 8 days, and the in-hospital mortality rate was 2.4%. At discharge, 62% of patients were prescribed either angiotensin-converting enzyme-inhibitors or angiotensin receptor blockers, 60% were prescribed beta-blockers, and 49% were prescribed mineralocorticoid receptor antagonists. Conclusions The TSOC-HFrEF registry provided important insights into the current clinical characteristics and management of hospitalized decompensated systolic HF patients in Taiwan. One important observation was that adherence to guideline-directed medical therapy was suboptimal

  5. The Cost of Doing Business: Cost Structure of Electronic Immunization Registries

    PubMed Central

    Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

    2002-01-01

    Objective To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Data Sources/Study Setting Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. Study Design A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data Collection/Extraction Methods Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. Principal Findings The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. Conclusions There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment. PMID:12479497

  6. Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

    PubMed

    Kuwatsuka, Yachiyo

    2016-01-01

    Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed. PMID:26563189

  7. A comprehensive stroke center patient registry: advantages, limitations, and lessons learned

    PubMed Central

    Siegler, James E.; Boehme, Amelia K.; Dorsey, Adrianne M.; Monlezun, Dominique J.; George, Alex J.; Shaban, Amir; Bockholt, H. Jeremy; Albright, Karen C.; Martin-Schild, Sheryl

    2015-01-01

    Introduction The use of a medical data registry allows institutions to effectively manage information for many different investigations related to the registry, as well as evaluate patient's trends over time, with the ultimate goal of recognizing trends that may improve outcomes in a particular patient population. Methods The purpose of this article is to illustrate our experience with a stroke patient registry at a comprehensive stroke center and highlight advantages, disadvantages, and lessons learned in the process of designing, implementing, and maintaining a stroke registry. We detail the process of stroke registry methodology, common data element (CDE) definitions, the generation of manuscripts from a registry, and the limitations. Advantages The largest advantage of a registry is the ability to prospectively add patients, while allowing investigators to go back and collect information retrospectively if needed. The continuous addition of new patients increases the sample size of studies from year to year, and it also allows reflection on clinical practices from previous years and the ability to investigate trends in patient management over time. Limitations The greatest limitation in this registry pertains to our single-entry technique where multiple sites of data entry and transfer may generate errors within the registry. Lessons Learned To reduce the potential for errors and maximize the accuracy and efficiency of the registry, we invest significant time in training competent registry users and project leaders. With effective training and transition of leadership positions, which are continuous and evolving processes, we have attempted to optimize our clinical research registry for knowledge gain and quality improvement at our center. PMID:26913217

  8. Malignancies in Swedish persons with haemophilia: a longitudinal registry study.

    PubMed

    Lövdahl, Susanna; Henriksson, Karin M; Baghaei, Fariba; Holmström, Margareta; Berntorp, Erik; Astermark, Jan

    2016-09-01

    The aim of the study was to investigate, over time, the incidence of and mortality due to malignant diseases among persons with haemophilia, compared to matched controls. Persons with haemophilia A or B were enrolled via registries at each haemophilia centre, as well as from the National Patient Registry, and were compared to five sex and age-matched controls per patient. Data from the national Cancer Registry were linked to the study participants. A total of 1431 persons with haemophilia and 7150 matched controls were enrolled. Between the years 1972 and 2008, 164 malignancies were reported. The most common type of cancer among patients was prostate cancer, followed by haematologic malignancies, including lymphoma and leukaemia, which were significantly more frequent in patients [n = 35 (2.4%) vs. n = 60 (0.8%); P < 0.001]. Malignancies in bladder and other urinary organs were also significantly different [n = 21 (1.5%) vs. n = 46 (0.6%); P < 0.01]. The overall incidence rate ratio of malignancies per 1000 person-years compared to the controls was 1.3 [95% confidence interval (CI) 1.1, 1.6]. In subgroup analysis, the corresponding incidence rate ratios per 1000 person-years for persons with severe haemophilia was 1.7 (95% CI 0.9, 3.1) and that for mild/moderate haemophilia 1.1 (95% CI 0.8, 1.5). Swedish persons with haemophilia had a significantly higher incidence of malignant diseases than controls. These were primarily haematologic malignancies and cancer in urinary organs, and the difference independent of any co-infections with HIV and/or viral hepatitis. The findings indicate the importance of further studies and close follow-up of malignancies in persons with haemophilia. PMID:26974329

  9. The Pelvic Floor Disorders Registry: Purpose and Development.

    PubMed

    Bradley, Catherine S; Visco, Anthony G; Weber LeBrun, Emily E; Barber, Matthew D

    2016-01-01

    Pelvic organ prolapse (POP) is a common problem that negatively impacts women's quality of life. A variety of surgeries exist for POP treatment, including procedures performed with and without mesh augmentation. The growing use of mesh in prolapse surgeries in the 2000s was associated with increasing reports of complications, resulting in Food and Drug Administration (FDA) Safety Notifications, and in 2012, the FDA ordered transvaginal mesh manufacturers to conduct prospective studies to evaluate longer-term outcomes. These requirements provided incentives and an environment conducive to collaboration. American Urogynecologic Society leaders collaborated with device manufacturers, the FDA, and other professional organizations to establish the Pelvic Floor Disorders Registry (PFDR), a collection of interrelated registries, which could meet manufacturers' needs but also allow surgeons to track individual and aggregate outcomes for quality improvement. The PFDR was developed and launched by American Urogynecologic Society with objectives of (1) collecting, storing, and analyzing clinical data related to POP treatment; (2) establishing common data elements and quality metrics; and (3) providing a framework for external stakeholders to conduct POP research. The PFDR includes industry-sponsored studies, as well as 2 options for volunteer registry participation, the PFDR-Quality Improvement and PFDR-Research. The PFDR promotes quality improvement and national benchmarking and will provide real-world comparative safety and effectiveness data for prolapse surgeries. The PFDR can serve as a model for collaboration between medical practitioners, researchers, industry, and federal agencies and may allow progress toward our similar goal of high-quality surgical care of women with prolapse. PMID:26829344

  10. Commensurate registry and chemisorption at a hetero-organic interface.

    PubMed

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character. PMID:22463427

  11. Commensurate Registry and Chemisorption at a Hetero-organic Interface

    NASA Astrophysics Data System (ADS)

    Stadtmüller, Benjamin; Sueyoshi, Tomoki; Kichin, Georgy; Kröger, Ingo; Soubatch, Sergey; Temirov, Ruslan; Tautz, F. Stefan; Kumpf, Christian

    2012-03-01

    We present evidence for a partly chemisorptive bonding between single monolayers of copper-II-phthalocyanine (CuPc) and 3,4,9,10-perylene-tetracarboxylic-dianhydride (PTCDA) that are stacked on Ag(111). A commensurate registry between the two molecular layers and the substrate, i.e., a common crystallographic lattice for CuPc and PTCDA films as well as for the Ag(111) surface, indicates that the growth of the upper layer is dominated by the structure of the lower. Photoemission spectroscopy clearly reveals a gradual filling of the lowest unoccupied molecular orbital of PTCDA due to CuPc adsorption, which proves the chemisorptive character.

  12. Acquired von Willebrand syndrome: data from an international registry.

    PubMed

    Federici, A B; Rand, J H; Bucciarelli, P; Budde, U; van Genderen, P J; Mohri, H; Meyer, D; Rodeghiero, F; Sadler, J E

    2000-08-01

    The acquired von Willebrand syndrome (AvWS) is a rare bleeding disorder with laboratory findings similar to those of congenital von Willebrand disease (vWD). Despite the numerous cases reported in the literature until 1999 (n = 266), large studies on AvWS are not available. Moreover, diagnosis of AvWS has been difficult and treatment empirical. These considerations prompted us to organize an international registry. A questionnaire, devised to collect specific information on AvWS, was sent to all the members of the International Society on Thrombosis and Haemostasis (ISTH), who were invited to respond if they had diagnosed cases with the AvWS cases. 156 members answered the questionnaire and 54 of them sent information on 211 AvWS cases from 50 centers. Data were compared with those already published in the literature and 25 cases already described or not correctly diagnosed were excluded. The 186 AvWS cases that qualified for the registry were associated with lymphoproliferative (48%) and myeloproliferative disorders (15%), neoplasia (5%), immunological (2%), cardiovascular (21%) and miscellaneous disorders (9%). Ristocetin cofactor activity (vWF:RCo) or collagen binding activity (vWF:CBA) were usually low in AvWS (median values 20 U/dL, range 3-150), while factor VIII coagulant activity was sometimes normal (median 25 U/dL, range 3-191). FVIII/vWF inhibiting activities were present in only a minority of cases (16%). Bleeding episodes in AvWS were mostly of mucocutaneous type (68%) and were managed by DDAVP (32%), FVIII/vWF concentrates (37%), intravenous immunoglobulins (33%), plasmapheresis (19%), corticosteroids (19%) and immunosuppressive or chemotherapic agents (35%). Based upon the data of this international registry, it appears that AvWS is especially frequent in lympho- or myeloproliferative and cardiovascular diseases. Therefore, AvWS should be suspected and searched with the appropriate laboratory tests especially when excessive bleeding occurs in

  13. PARENT joint action: increasing the added value of patient registries in a cross-border setting.

    PubMed

    Meglič, Matic; Doupi, Persephone; Pristaš, Ivan; Skalkidis, Yannis; Zaletel, Metka; Orel, Andrej

    2013-01-01

    Patient registries are poorly interoperable and as a result data exchange or aggregation across organizations, regions and countries for secondary purposes (i.e. research and public health) is difficult to perform. PARENT Joint Action aims to provide EU Member States with a set of guidelines, recommendations and tools to support setting-up, management and governance of interoperable patient registries, thus helping EU Member States to drive down cost and interoperability risks of patient registries as well as improving secondary us-age of registry data in a cross-border setting. PMID:23920935

  14. Hereditary cancer registries improve the care of patients with a genetic predisposition to cancer: contributions from the Dutch Lynch syndrome registry.

    PubMed

    Vasen, Hans F A; Velthuizen, Mary E; Kleibeuker, Jan H; Menko, Fred H; Nagengast, Fokke M; Cats, Annemieke; van der Meulen-de Jong, Andrea E; Breuning, Martijn H; Roukema, Anne J; van Leeuwen-Cornelisse, Inge; de Vos Tot Nederveen Cappel, Wouter H; Wijnen, Juul T

    2016-07-01

    The Dutch Hereditary Cancer Registry was established in 1985 with the support of the Ministry of Health (VWS). The aims of the registry are: (1) to promote the identification of families with hereditary cancer, (2) to encourage the participation in surveillance programs of individuals at high risk, (3) to ensure the continuity of lifelong surveillance examinations, and (4) to promote research, in particular the improvement of surveillance protocols. During its early days the registry provided assistance with family investigations and the collection of medical data, and recommended surveillance when a family fulfilled specific diagnostic criteria. Since 2000 the registry has focused on family follow-up, and ensuring the quality of surveillance programs and appropriate clinical management. Since its founding, the registry has identified over 10,000 high-risk individuals with a diverse array of hereditary cancer syndromes. All were encouraged to participate in prevention programmes. The registry has published a number of studies that evaluated the outcome of surveillance protocols for colorectal cancer (CRC) in Lynch syndrome, as well as in familial colorectal cancer. In 2006, evaluation of the effect of registration and colonoscopic surveillance on the mortality rate associated with colorectal cancer (CRC) showed that the policy led to a substantial decrease in the mortality rate associated with CRC. Following discovery of MMR gene defects, the first predictive model that could select families for genetic testing was published by the Leiden group. In addition, over the years the registry has produced many cancer risk studies that have helped to develop appropriate surveillance protocols. Hereditary cancer registries in general, and the Lynch syndrome registry in particular, play an important role in improving the clinical management of affected families. PMID:26973060

  15. The Global Network Maternal Newborn Health Registry: a multi-national, community-based registry of pregnancy outcomes

    PubMed Central

    2015-01-01

    Background The Global Network for Women's and Children's Health Research (Global Network) supports and conducts clinical trials in resource-limited countries by pairing foreign and U.S. investigators, with the goal of evaluating low-cost, sustainable interventions to improve the health of women and children. Accurate reporting of births, stillbirths, neonatal deaths, maternal mortality, and measures of obstetric and neonatal care is critical to efforts to discover strategies for improving pregnancy outcomes in resource-limited settings. Because most of the sites in the Global Network have weak registration within their health care systems, the Global Network developed the Maternal Newborn Health Registry (MNHR), a prospective, population-based registry of pregnancies at the Global Network sites to provide precise data on health outcomes and measures of care. Methods Pregnant women are enrolled in the MNHR if they reside in or receive healthcare in designated groups of communities within sites in the Global Network. For each woman, demographic, health characteristics and major outcomes of pregnancy are recorded. Data are recorded at enrollment, the time of delivery and at 42 days postpartum. Results From 2010 through 2013 Global Network sites were located in Argentina, Guatemala, Belgaum and Nagpur, India, Pakistan, Kenya, and Zambia. During this period, 283,496 pregnant women were enrolled in the MNHR; this number represented 98.8% of all eligible women. Delivery data were collected for 98.8% of women and 42-day follow-up data for 98.4% of those enrolled. In this supplement, there are a series of manuscripts that use data gathered through the MNHR to report outcomes of these pregnancies. Conclusions Developing public policy and improving public health in countries with poor perinatal outcomes is, in part, dependent upon understanding the outcome of every pregnancy. Because the worst pregnancy outcomes typically occur in countries with limited health registration

  16. First annual report of the Austrian CML registry.

    PubMed

    Schmidt, Stefan; Wolf, Dominik; Thaler, Josef; Burgstaller, Sonja; Linkesch, Wolfgang; Petzer, Andreas; Fridrik, Michael; Lang, Alois; Agis, Hermine; Valent, Peter; Krieger, Otto; Walder, Alois; Korger, Markus; Schlögl, Ernst; Sliwa, Tamer; Wöll, Ernst; Mitterer, Manfred; Eisterer, Wolfgang; Pober, Michael; Gastl, Günther

    2010-10-01

    The Austrian chronic myeloid leukemia (CML) registry monitors individual disease courses, treatments applied, clinical outcome, and side effects of CML patients on a nationwide basis to provide data on the "real-life" situation and to complement the information and interpretation gained from the selected patient population observed in clinical trials. This report summarizes the Austrian CML registry data as of March 2009. A total of 179 patients have been registered with a median number of 1012 follow-up visits and median observation duration of 20 months. At diagnosis most patients (n = 163) were in chronic phase (early, late, and secondary), whereas only 4 were in advanced phase. A total of 137 patients were treated with tyrosine kinase inhibitors (TKIs), of which 14 received first and second generation TKIs sequentially. Other treatment modalities included chemotherapy or interferon and stem cell transplantation (SCT). Cumulative incidence rates for complete hematological responses (CHR) were 91.6% and 94.4% at 12 and 24 months, respectively, compared to cumulative incidence rates of complete cytogenetical response rates of 64% and 80% at these timepoints. A total of 5 patients progressed from chronic phase to accelerated (n = 3) and blastic phase (n = 2) while receiving imatinib standard dose. Estimated overall survival (OS) rate at 60 months was 90% and progression free survival (PFS) according to European Leukemia Net (ELN) failure definition was 58%. PMID:20936366

  17. [Food-induced anaphylaxis - data from the anaphylaxis registry].

    PubMed

    Worm, Margitta; Grünhagen, Josefine; Dölle, Sabine

    2016-07-01

    Anaphylactic reactions due to food occur in the context of food allergy and, together with venom and drugs, are the most frequent elicitors of severe allergic reactions. In small children the most frequent elicitors of severe allergic reactions according to data from the anaphylaxis registry are hen's egg and milk, whereas in school children peanut and hazelnut are frequent elicitors of allergic reactions. Other frequent elicitors of anaphylactic reactions in childhood are wheat and soy. In adults the most frequent elicitors of severe allergic reactions due to food, based on data from the anaphylaxis registry, are wheat, soy, celery, shellfish and hazelnut. Rare elicitors of food-induced anaphylaxis in German-speaking countries are mustard and cabbage. However, the panel of rare elicitors of food-induced anaphylaxis show regional differences. As of March 2015, 17 cases of fatal anaphylaxis were registered and among these seven were food-induced. Co-factors can either trigger the elicitation of a severe allergic reaction or affect its severity. Among such co-factors are physical activity, the intake of certain drugs, and psychological stress. The data on the role of cofactors is sparse. The management of food-induced anaphylaxis includes acute management according to current guidelines, but also long-term management, which should include educational measures regarding treatment but also information about the food allergen in daily life. PMID:27255298

  18. Dispelling myths about rare disease registry system development

    PubMed Central

    2013-01-01

    Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases. If designed appropriately, patient and disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, registries possess a diverse range of functionality, operate in different, often-times incompatible, software environments and serve various, and sometimes incongruous, purposes. Given the ambitious goals of the International Rare Diseases Research Consortium (IRDiRC) by 2020 and beyond, RDRs must be designed with the agility to evolve and efficiently interoperate in an ever changing rare disease landscape, as well as to cater for rapid changes in Information Communication Technologies. In this paper, we contend that RDR requirements will also evolve in response to a number of factors such as changing disease definitions and diagnostic criteria, the requirement to integrate patient/disease information from advances in either biotechnology and/or phenotypying approaches, as well as the need to adapt dynamically to security and privacy concerns. We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development. PMID:24131574

  19. Renal registry in Hong Kong—the first 20 years

    PubMed Central

    Leung, Chi Bon; Cheung, Wai Lun; Li, Philip Kam Tao

    2015-01-01

    Renal Registry was started by the Hospital Authority (HA) in Hong Kong in 1995. It is an online system developed by HA. It collects all patients under care in HA, which is about 90–95 % of all requiring renal replacement therapy (RRT) in Hong Kong. The total number of patients treated increased from 3312 in 1996 to 8510 in 2013. In 2013, there were 3501 renal transplant, 1192 hemodialysis (HD) and 3817 peritoneal dialysis (PD) patients. In 2013, 1147 new patients joined the RRT program, 49.6% of them suffered from diabetic nephropathy. Glomerulonephritis and hypertension are the 2nd and 3rd most common causes of RRT in Hong Kong. The median age was 59.1 years with male to female ratio of 1.54 to 1. Hong Kong practices ‘PD first' policy and the majority of the patients are on CAPD treatment. The ratio of PD to HD was 76.2% to 23.8%. Eighty-six percent of all PD patients are on CAPD; the remaining 14% are on automated peritoneal dialysis (APD). Sixty-five percent of all dialysis patients are on erythropoiesis-stimulating agent treatment. The Hong Kong Renal Registry with online real-time data input and access can provide timely data and information to facilitate patient care and management and also provides invaluable data to help in development and planning of renal services in Hong Kong. PMID:26097783

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

    NASA Technical Reports Server (NTRS)

    1993-01-01

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

  1. The role of cancer registries in cancer control.

    PubMed

    Parkin, Donald Maxwell

    2008-04-01

    Cancer control aims to reduce the incidence, morbidity, and mortality of cancer and to improve the quality of life of cancer patients through the systematic implementation of evidence-based interventions in prevention, early diagnosis, treatment, and palliative care. In the context of a national cancer control program (NCCP), a cancer surveillance program (CSP), built around a population-based cancer registry, is an essential element. Data on the size and evolution of the cancer burden in the population are essential to evaluation of the current situation, to setting objectives for cancer control, and defining priorities. Cancer data are essential in monitoring the progress of the implementation of an NCCP, as well as providing an evaluation of the many individual cancer control activities. In the context of an NCCP, the CSP should provide a focus of epidemiological expertise, not only for providing statistical data on incidence, mortality, stage distribution, treatment patterns, and survival but also for conducting studies into the important causes of cancer in the local situation, and for providing information about the prevalence of exposure to these factors in the population. Cancer surveillance via the population-based registry therefore plays a crucial role in formulating cancer control plans, as well as in monitoring their success. PMID:18463952

  2. Database structure for the Laser Accident and Incident Registry (LAIR)

    NASA Astrophysics Data System (ADS)

    Ness, James W.; Hoxie, Stephen W.; Zwick, Harry; Stuck, Bruce E.; Lund, David J.; Schmeisser, Elmar T.

    1997-05-01

    The ubiquity of laser radiation in military, medical, entertainment, telecommunications and research industries and the significant risk, of eye injury from this radiation are firmly established. While important advances have been made in understanding laser bioeffects using animal analogues and clinical data, the relationships among patient characteristics, exposure conditions, severity of the resulting injury, and visual function are fragmented, complex and varied. Although accident cases are minimized through laser safety regulations and control procedures, accumulated accident case information by the laser eye injury evaluation center warranted the development of a laser accident and incident registry. The registry includes clinical data for validating and refining hypotheses on injury and recovery mechanisms; a means for analyzing mechanisms unique to human injury; and a means for identifying future areas of investigation. The relational database supports three major sections: (1) the physics section defines exposure circumstances, (2) the clinical/ophthalmologic section includes fundus and scanning laser ophthalmoscope images, and (3) the visual functions section contains specialized visual function exam results. Tools are available for subject-matter experts to estimate parameters like total intraocular energy, ophthalmic lesion grade, and exposure probability. The database is research oriented to provide a means for generating empirical relationships to identify symptoms for definitive diagnosis and treatment of laser induced eye injuries.

  3. Evidence-based programs registry: blueprints for Healthy Youth Development.

    PubMed

    Mihalic, Sharon F; Elliott, Delbert S

    2015-02-01

    There is a growing demand for evidence-based programs to promote healthy youth development, but this growth has been accompanied by confusion related to varying definitions of evidence-based and mixed messages regarding which programs can claim this designation. The registries that identify evidence-based programs, while intended to help users sift through the findings and claims regarding programs, has oftentimes led to more confusion with their differing standards and program ratings. The advantages of using evidence-based programs and the importance of adopting a high standard of evidence, especially when taking programs to scale,are described. One evidence-based registry is highlighted--Blueprints for Healthy Youth Development hosted at the University of Colorado Boulder. Unlike any previous initiative of its kind, Blueprints established unmatched standards for identifying evidence-based programs and has acted in a way similar to the FDA--evaluating evidence, data and research to determine which programs meet their high standard of proven efficacy. PMID:25193177

  4. Publications list of the United States Transuranium and Uranium Registries, 1968--1993

    SciTech Connect

    Kathren, R.L.; Hunacek, M.; Gervais, T.

    1993-07-01

    The United States Transuranium and Uranium Registries (USTUR) began with the establishment of the National Plutonium Registry in 1968. In 1910, the name was changed to the United States Transuranium Registry to reflect a broader concern with the entire spectrum of transuranium elements, and in 1918, a parallel but separate United States Uranium Registry was created to study the uranium decay series. With similar goals of understanding the biokinetics, dosimetry, and potential health effects of transuranic elements and uranium series based on actual human experience, the two registries were administratively joined in February 1992. Accordingly, compilation and publication of a complete listing and collection of Registries publications for from the inception through July 1993 was undertaken to coincide with the silver anniversary of the Registries. The following criteria were established for the various categories of publications included in the listing of publications: Journal Articles and Conference Proceedings -- Comprised of all known publications in the open peer reviewed scientific literature for research and related activities carried out, funded, or otherwise sponsored, wholly or in part, by the Registries. The peer reviewed literature was taken to include scientific journals and formal published proceedings of scientific meetings. Annual Reports -- These are annual or progress reports published by the Registries. Miscellaneous Publications -- These are professional or scientific publications of staff affiliated with the Registries at the time of publication that do not fit into the above categories. Included are abstracts, book reviews, letters to the editor, articles from the peer reviewed scientific literature and technical reports. Books and Book Chapters -- This category consists of scientific or technical books and book chapters authored by professional staff affiliated with the Registries at the time of preparation.

  5. Outcomes registry for better informed treatment of atrial fibrillation II: Rationale and design of the ORBIT-AF II registry

    PubMed Central

    Steinberg, Benjamin A.; Blanco, Rosalia G.; Ollis, Donna; Kim, Sunghee; Holmes, DaJuanicia N.; Kowey, Peter R.; Fonarow, Gregg C.; Ansell, Jack; Gersh, Bernard; Go, Alan S.; Hylek, Elaine; Mahaffey, Kenneth W.; Thomas, Laine; Chang, Paul; Peterson, Eric D.; Piccini, Jonathan P.

    2014-01-01

    Background Recent clinical trials have demonstrated the safety and efficacy of several non–vitamin K oral anticoagulants (NOACs) for the treatment of atrial fibrillation (AF). However, there are limited data on their use and outcomes in routine clinical practice, particularly among patients newly diagnosed as having AF and patients with AF recently transitioned to a NOAC. Methods/Design ORBIT-AF II is a multicenter, national registry of patients with AF that is enrolling up to 15,000 newly diagnosed patients with AF and/or those with AF recently transitioned to a NOAC from 300 US outpatient practices. These patients will be followed for up to 2 years, including clinical status, outcomes (major adverse cardiovascular events, bleeding), and management of anticoagulation surrounding bleeding events. In addition, detailed data regarding the use of these agents in and around cardiac procedures, their complications, and management of such complications will be collected. Conclusions The ORBIT-AF II registry will provide valuable insights into the safety and effectiveness of NOACs used in AF in community practice settings. PMID:25066554

  6. The North Carolina Online Sex Offender Registry: Awareness and Utilization by Childcare Providers

    ERIC Educational Resources Information Center

    White, Jennifer L.; Malesky, L. Alvin, Jr.

    2009-01-01

    This study examined childcare providers' usage of the North Carolina Sex Offender and Public Protection Registry. One hundred twenty three childcare providers in 76 counties in North Carolina were surveyed via telephone interview about their utilization of the registry Web site. Responses revealed that most providers knew about the registry…

  7. Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

    PubMed Central

    Hume, Keith M.; Crotty, Catherine A.; Simmons, Christopher J.; Neumeister, Michael W.; Chung, Kevin C.

    2014-01-01

    Clinical data registries are commonly used worldwide and are implemented for a variety of purposes ranging from physician or facility clinic logs for tracking patients, collecting outcomes data, to measuring quality improvement or safety of medical devices. In the United States, the Food and Drug Administration has used data collected through registries to facilitate the drug and device regulatory process, ongoing surveillance during the product life-cycle, and for disease appraisals. Furthermore, the Centers for Medicare and Medicaid Services, in certain instances, base registry participation and submitting data to registries as factors for reimbursement decisions. The purpose of this article is to discuss the use of clinical data registries, the role that medical specialty societies, in particular the American Society of Plastic Surgeons and The Plastic Surgery Foundation, can have in the development and management of registries, and the opportunities for registry use in Plastic Surgery. As outcomes data are becoming essential measures of quality healthcare delivery, participating in registry development and centralized data collection has become a critical effort for Plastic Surgery to engage in to proactively participate in the national quality and performance measurement agenda. PMID:23806935

  8. The Trace Center International Hardware/Software Registry: Programs for Handicapped Students.

    ERIC Educational Resources Information Center

    Brady, Mary

    1982-01-01

    The Trace Center (University of Wisconsin) has assembled a registry of hardware/software programs and adaptations for the handicapped user. The registry contains information on augmentative devices for motoric, sensory, or cognitive skills; special inputs that provide access to standard software; and other programs with speech output. (CL)

  9. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 36 Parks, Forests, and Public Property 3 2013-07-01 2012-07-01 true Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  10. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 36 Parks, Forests, and Public Property 3 2012-07-01 2012-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  11. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 36 Parks, Forests, and Public Property 3 2011-07-01 2011-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  12. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 36 Parks, Forests, and Public Property 3 2014-07-01 2014-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  13. Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research

    PubMed Central

    Zachary, Iris; Boren, Suzanne A; Simoes, Eduardo; Jackson-Thompson, Jeannette; Davis, J Wade; Hicks, Lanis

    2015-01-01

    Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries’ data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible. PMID:26392844

  14. 78 FR 33894 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-05

    ... AFFAIRS Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment... members of the Armed Forces to toxic airborne chemicals and fumes caused by open burn pits. DATES: Written...: cynthia.harvey-pryor@va.gov . Please refer to ``OMB Control No. 2900-NEW, Open Burn Pit Registry...

  15. Electronic Patient Registries Improve Diabetes Care and Clinical Outcomes in Rural Community Health Centers

    ERIC Educational Resources Information Center

    Pollard, Cecil; Bailey, Kelly A.; Petitte, Trisha; Baus, Adam; Swim, Mary; Hendryx, Michael

    2009-01-01

    Context: Diabetes care is challenging in rural areas. Research has shown that the utilization of electronic patient registries improves care; however, improvements generally have been described in combination with other ongoing interventions. The level of basic registry utilization sufficient for positive change is unknown. Purpose: The goal of…

  16. 77 FR 18248 - Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-27

    ... HUMAN SERVICES Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention (CDC) publishes a list of information... in the Navajo Nation--New--Agency for Toxic Substances and Disease Registry (ATSDR) and Centers...

  17. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries

    PubMed Central

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  18. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries.

    PubMed

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  19. History and development of trauma registry: lessons from developed to developing countries

    PubMed Central

    Nwomeh, Benedict C; Lowell, Wendi; Kable, Renae; Haley, Kathy; Ameh, Emmanuel A

    2006-01-01

    Background A trauma registry is an integral component of modern comprehensive trauma care systems. Trauma registries have not been established in most developing countries, and where they exist are often rudimentary and incomplete. This review describes the role of trauma registries in the care of the injured, and discusses how lessons from developed countries can be applied toward their design and implementation in developing countries. Methods A detailed review of English-language articles on trauma registry was performed using MEDLINE and CINAHL. In addition, relevant articles from non-indexed journals were identified with Google Scholar. Results The history and development of trauma registries and their role in modern trauma care are discussed. Drawing from past and current experience, guidelines for the design and implementation of trauma registries are given, with emphasis on technical and logistic factors peculiar to developing countries. Conclusion Improvement in trauma care depends on the establishment of functioning trauma care systems, of which a trauma registry is a crucial component. Hospitals and governments in developing countries should be encouraged to establish trauma registries using proven cost-effective strategies. PMID:17076896

  20. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

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

    ERIC Educational Resources Information Center

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

    2011-01-01

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

  2. THE RARE DISEASES CLINICAL RESEARCH NETWORK CONTACT REGISTRY UPDATE: FEATURES AND FUNCTIONALITY

    PubMed Central

    Richesson, Rachel; Sutphen, Rebecca; Shereff, Denise; Krischer, Jeff

    2013-01-01

    The Rare Diseases Clinical Research Network (RDCRN) Contact Registry has grown in size and scope since it was first reported in this journal in 2007. In this paper, we reflect on our seven years’ experience developing and expanding the RDCRN Contact Registry to include many more rare diseases. We present the functional and data requirements that motivated this registry, and the new features and policies that have been developed since. Given the high costs and long-term commitment required to build patient registries, the RDCRN Contact Registry experience represents a reasonable approach for identifying and cultivating potential research populations, with minimal resources and patient burden. The basic model of a patient-reported registry has not changed since our 2007 report, but the number of diseases has grown from 42 to 201, and the types of information that are exchanged with participants has expanded. A patient-directed information-sharing feature has been added to reduce barriers to communication between investigators and patients affected by rare and genetic diseases. As specific data and research needs arise, the Contact Registry can be leveraged to access needed data or to solicit patients for particular research opportunities. This multiple-disease registry is scalable, expandable, and standards-driven, and has become a model for clinical and translational research across rare and many other diseases. PMID:22405970

  3. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Registry under this Rule, 47 CFR 64.1200, or any other Federal regulation or law. Any person accessing the... 16 Commercial Practices 1 2010-01-01 2010-01-01 false Fee for access to the National Do Not Call... OF CONGRESS TELEMARKETING SALES RULE § 310.8 Fee for access to the National Do Not Call Registry....

  4. Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry--The EXCITING-ILD Registry.

    PubMed

    Kreuter, Michael; Herth, Felix J F; Wacker, Margarethe; Leidl, Reiner; Hellmann, Andreas; Pfeifer, Michael; Behr, Jürgen; Witt, Sabine; Kauschka, Dagmar; Mall, Marcus; Günther, Andreas; Markart, Philipp

    2015-01-01

    Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address these issues in Germany, a new prospective ILD registry, "Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases" (EXCITING-ILD), is being conducted by the German Centre for Lung Research in association with ambulatory, inpatient, scientific pulmonology organisations and patient support groups. This multicentre, noninterventional, prospective, and observational ILD registry aims to collect comprehensive and validated data from all healthcare institutions on the incidence, prevalence, characteristics, management, and outcomes regarding all ILD presentations in the real-world setting. Specifically, this registry will collect demographic data, disease-related data such as ILD subtype, treatments, diagnostic procedures (e.g., HRCT, surgical lung biopsy), risk factors (e.g., familial ILD), significant comorbidities, ILD managements, and disease outcomes as well as healthcare resource consumption. The EXCITING-ILD registry will include in-patient and out-patient ILD healthcare facilities in more than 100 sites. In summary, this registry will document comprehensive and current epidemiological data as well as important health economic data for ILDs in Germany. PMID:26640781

  5. Using software agents to maintain autonomous patient registries for clinical research.

    PubMed Central

    Murphy, S. N.; Rabbani, U. H.; Barnett, G. O.

    1997-01-01

    A software agent is an application that can function in an autonomous and intelligent fashion. We have used mobile software agents to maintain clinicians' patient research databases (patient registries). Agents were used to acquire data from the clinician and place it into the registries, copy data from hospital databases into the registries, and report data from the registries. The agents were programmed with the intelligence to navigate through complex network security, interact with legacy systems, and protect themselves from various forms of failure at multiple levels. To maximize the separation between our system and the hospital information infrastructure we often used Java, a platform-independent language, to program and distribute our software agents. By using mobile agents, we were able to distribute the computing time required by these applications to underutilized host machines upon which the registries could be maintained. PMID:9357591

  6. Establishing a National Medical Device Registry in Saudi Arabia: Lessons Learned and Future Work.

    PubMed

    Al-Surimi, Khaled; Househ, Mowafa; Almohandis, Essam; Alshagathrh, Fahd

    2015-01-01

    Medical device evaluation presents several unique challenges due to the great diversity and complexity of medical devices and their rapid technological evolution. There has been a variety of work conducted on the development of disease based registries and health surveillance systems in Saudi Arabia. However, the progress of medical device registry systems and post-market medical device surveillance systems remains in its infancy in Saudi Arabia and within the region. In 2007, a royal decree assigned the responsibility for regulating medical devices to the Saudi Food and Drug Authority (SFDA). Soon afterwards, the SFDA established the Medical Devices National Registry (MDNR) to house medical device information relating to manufacturers, agents, suppliers and end-users. The aim of this paper is to provide an overview on the Medical Device National Registry (MDNR) in Saudi Arabia and describe the current experience and future work of establishing a comprehensive medical device registry and post-market surveillance system in Saudi Arabia. PMID:26152943

  7. Creation of a Hyponatremia Registry Supported by an Industry-Derived Quality Control Methodology

    PubMed Central

    D., Giunta; N., Fuentes; V., Pazo; M. L., Posadas-Martínez; H., Michellangelo; G., Waisman; F., González Bernaldo De Quirós

    2010-01-01

    Background A clinical registry encompasses a selective set of rigorously collected and stored clinical data focused on a specific condition. Hyponatremia has multiple, complex underlying causes and is one of the most frequent laboratory abnormalities. No systematic registries of hyponatremic patients have been reported in the medical literature. The purpose of this project was to create a registry for hyponatremia in order to obtain epidemiological data that will help to better understand this condition. Objective This paper describes the creation of a registry for hyponatremia within a single institution that employs industry-based approaches for quality management to optimize data accuracy and completeness. Methods A prospective registry of incident hyponatremia cases was created for this study. A formalized statistically based quality control methodology was developed and implemented to analyze and monitor all the process indicators that were developed to ensure data quality. Results Between December 2006 and April 2009, 2443 episodes of hyponatremia were included. Six process indicators that reflect the integrity of the system were evaluated monthly, looking for variation that would suggest systematic problems. The graphical representation of the process measures through control charts allowed us to identify and subsequently address problems with maintaining the registry. Conclusion In this project we have created a novel hyponatremia registry. To ensure the quality of the data in this registry we have implemented a quality control methodology based on industrial principles that allows us to monitor the performance of the registry over time through process indicators in order to detect systematic problems. We postulate that this approach could be reproduced for other registries. PMID:23616856

  8. The role of the hospital registry in achieving outcome benchmarks in cancer care.

    PubMed

    Greene, Frederick L; Gilkerson, Sharon; Tedder, Paige; Smith, Kathy

    2009-06-15

    The hospital registry is a valuable tool for evaluating quality benchmarks in cancer care. As payment for performance standards are adopted, the registry will assume a more dynamic and economically important role in the hospital setting. At Carolinas Medical Center, the registry has been a key instrument in the comparison of state and national benchmarks and for program improvement in meeting standards in the care of breast and colon cancer. One of the significant successes of the American College of Surgeons Commission on Cancer (CoC) Hospital Approvals Program is the support of hospital registries, especially in small and midsized community hospitals throughout the United States. To become a member of the Hospital Approvals Program, a registry must be staffed appropriately and include analytic data for patients who have their primary diagnosis or treatment at the facility 1. The current challenge for most hospitals is to prove that the registry has specific worth when many facets of care are not compensated. Unfortunately a small number of hospitals have disbanded their registries because of the short-sighted decision that the registry and its personnel are a drain on the hospital system and do not generate revenue. In the present era of meeting benchmarks for care as a prelude to being paid by third party and governmental agencies 2,3, a primary argument is that the registry can be revenue-enhancing by quantifying specific outcomes in cancer care. Without having appropriate registry and abstract capability, the hospital leadership cannot measure the specific outcome benchmarks required in the era of "pay for performance" or "pay for participation". PMID:19466739

  9. European echinococcosis registry: human alveolar echinococcosis, Europe, 1982-2000.

    PubMed

    Kern, Petra; Bardonnet, Karine; Renner, Elisabeth; Auer, Herbert; Pawlowski, Zbigniew; Ammann, Rudolf W; Vuitton, Dominique A; Kern, Peter

    2003-03-01

    Surveillance for alveolar echinococcosis in central Europe was initiated in 1998. On a voluntary basis, 559 patients were reported to the registry. Most cases originated from rural communities in regions from eastern France to western Austria; single cases were reported far away from the disease-"endemic" zone throughout central Europe. Of 210 patients, 61.4% were involved in vocational or part-time farming, gardening, forestry, or hunting. Patients were diagnosed at a mean age of 52.5 years; 78% had symptoms. Alveolar echinococcosis primarily manifested as a liver disease. Of the 559 patients, 190 (34%) were already affected by spread of the parasitic larval tissue. Of 408 (73%) patients alive in 2000, 4.9% were cured. The increasing prevalence of Echinococcus multilocularis in foxes in rural and urban areas of central Europe and the occurrence of cases outside the alveolar echinococcosis-endemic regions suggest that this disease deserves increased attention. PMID:12643830

  10. [SPORTS-RELATED SUDDEN DEATH: LESSONS FROM THE FRENCH REGISTRY].

    PubMed

    Marijon, Eloi; Bougouin, Wulfran; Jouven, Xavier

    2015-09-01

    So far, sports-related sudden death has been mainly studied through young competitive athletes. The national sports-related sudden death French registry (2005-2010) is the first study evaluating sudden death during sports activities in the general population, estimating that approximately 1000 cases occur each year in France. The vast majority occurs among middle age men practicing recreational activities, with women presenting a very low risk (up to 30-fold lower) compared to men. Outcomes dramatically vary across districts with survival to hospital discharge from 0 to 50%. Those differences are mainly the result of major disparities between districts regarding cardiopulmonary resuscitation initiated by bystanders. Coronary artery disease remains the most frequent cardiovascular disease associated with such events. PMID:26619725

  11. The burn registry program in Iran - First report

    PubMed Central

    Karimi, H.; Momeni, M.; Motevalian, A.; Bahar, M.A.; Boddouhi, N.; Alinejad, F.

    2014-01-01

    Summary Burn injury is still a major problem in Iran, resulting in many reports which are usually dispersed, uncoordinated and probably unreliable. We created a burn registry comprised of a data entry program with 222 variables for each admitted burn patient. This program was established in August 2010 at the Iran University of Medical Sciences, Motahari Burn Hospital. We had 14,277 burn patients from August 2010 to August 2011, 877 of whom were admitted to the hospital. Of the patients, 65.9% were male and 34.1% were female. The age was 28.85 years (SD = 19.77). The most prevalent cause of burn was flame 78.5% (pipe propane gas 57.2; kerosene 19.9%). The mean total body surface area (TBSA) involvement was 23%. A total of 77.8% of patients were discharged with partial recovery, while mortality was 8.9%. The mean hospital stay was 14.63 days (SD =11.07). The program is designed to help understand the scope of burn injury in Iran, providing information on patients, etiology, and course of treatment. It also highlights differences between various parts of the country in terms of the causes and frequency of burn injuries. Moreover, the burn registry provides a basis for further research and surveys for treatment and preventive programs. Our results showed that, although Emergency Medical Services (EMS) staff are highly capable and well-trained, their coverage seems to be less than 50% and needs to be increased. Marriage status was shown to have no influence on the occurrence of burns, and among our patients, 57.0 % were poorly educated. PMID:26170796

  12. Current treatment practice and outcomes. Report of the hyponatremia registry.

    PubMed

    Greenberg, Arthur; Verbalis, Joseph G; Amin, Alpesh N; Burst, Volker R; Chiodo, Joseph A; Chiong, Jun R; Dasta, Joseph F; Friend, Keith E; Hauptman, Paul J; Peri, Alessandro; Sigal, Samuel H

    2015-07-01

    Current management practices for hyponatremia (HN) are incompletely understood. The HN Registry has recorded diagnostic measures, utilization, efficacy, and outcomes of therapy for eu- or hypervolemic HN. To better understand current practices, we analyzed data from 3087 adjudicated adult patients in the registry with serum sodium concentration of 130 mEq/l or less from 225 sites in the United States and European Union. Common initial monotherapy treatments were fluid restriction (35%), administration of isotonic (15%) or hypertonic saline (2%), and tolvaptan (5%); 17% received no active agent. Median (interquartile range) mEq/l serum sodium increases during the first day were as follows: no treatment, 1.0 (0.0-4.0); fluid restriction, 2.0 (0.0-4.0); isotonic saline, 3.0 (0.0-5.0); hypertonic saline, 5.0 (1.0-9.0); and tolvaptan, 4.0 (2.0-9.0). Adjusting for initial serum sodium concentration with logistic regression, the relative likelihoods for correction by 5 mEq/l or more (referent, fluid restriction) were 1.60 for hypertonic saline and 2.55 for tolvaptan. At discharge, serum sodium concentration was under 135 mEq/l in 78% of patients and 130 mEq/l or less in 49%. Overly rapid correction occurred in 7.9%. Thus, initial HN treatment often uses maneuvers of limited efficacy. Despite an association with poor outcomes and availability of effective therapy, most patients with HN are discharged from hospital still hyponatremic. Studies to assess short- and long-term benefits of correction of HN with effective therapies are needed. PMID:25671764

  13. Aneurysm Study of Pipeline in an Observational Registry (ASPIRe)

    PubMed Central

    Kallmes, David F.; Brinjikji, Waleed; Boccardi, Edoardo; Ciceri, Elisa; Diaz, Orlando; Tawk, Rabih; Woo, Henry; Jabbour, Pascal; Albuquerque, Felipe; Chapot, Rene; Bonafe, Alain; Dashti, Shervin R.; Almandoz, Josser E. Delgado; Given, Curtis; Kelly, Michael E.; Cross, DeWitte T.; Duckwiler, Gary; Razack, Nasser; Powers, Ciaran J.; Fischer, Sebastian; Lopes, Demetrius; Harrigan, Mark R.; Huddle, Daniel; Turner, Raymond; Zaidat, Osama O.; Defreyne, Luc; Pereira, Vitor Mendes; Cekirge, Saruhan; Fiorella, David; Hanel, Ricardo A.; Lylyk, Pedro; McDougall, Cameron; Siddiqui, Adnan; Szikora, Istvan; Levy, Elad

    2016-01-01

    Background and Objective Few prospective studies exist evaluating the safety and efficacy of the Pipeline Embolization Device (PED) in the treatment of intracranial aneurysms. The Aneurysm Study of Pipeline In an observational Registry (ASPIRe) study prospectively analyzed rates of complete aneurysm occlusion and neurologic adverse events following PED treatment of intracranial aneurysms. Materials and Methods We performed a multicenter study prospectively evaluating patients with unruptured intracranial aneurysms treated with PED. Primary outcomes included (1) spontaneous rupture of the Pipeline-treated aneurysm; (2) spontaneous nonaneurysmal intracranial hemorrhage (ICH); (3) acute ischemic stroke; (4) parent artery stenosis, and (5) permanent cranial neuropathy. Secondary endpoints were (1) treatment success and (2) morbidity and mortality at the 6-month follow-up. Vascular imaging was evaluated at an independent core laboratory. Results One hundred and ninety-one patients with 207 treated aneurysms were included in this registry. The mean aneurysm size was 14.5 ± 6.9 mm, and the median imaging follow-up was 7.8 months. Twenty-four aneurysms (11.6%) were small, 162 (78.3%) were large and 21 (10.1%) were giant. The median clinical follow-up time was 6.2 months. The neurological morbidity rate was 6.8% (13/191), and the neurological mortality rate was 1.6% (3/191). The combined neurological morbidity/mortality rate was 6.8% (13/191). The most common adverse events were ischemic stroke (4.7%, 9/191) and spontaneous ICH (3.7%, 7/191). The complete occlusion rate at the last follow-up was 74.8% (77/103). Conclusions Our prospective postmarket study confirms that PED treatment of aneurysms in a heterogeneous patient population is safe with low rates of neurological morbidity and mortality. Patients with angiographic follow-up had complete occlusion rates of 75% at 8 months. PMID:27610126

  14. Staffing and Training Requirements for Tumor Registry Centers in the State of Louisiana. Technical Report 69-101.

    ERIC Educational Resources Information Center

    Fink, C. Dennis

    An exploratory study was conducted to obtain information regarding staff requirements in small tumor registry centers, involving a brief analysis of existing tumor registry centers and exploration of training and organizational factors that might be associated with establishing new centers. Activities performed by tumor registry personnel were…

  15. Problem of small numbers in reporting of cancer incidence and mortality rates in Indian cancer registries.

    PubMed

    Takiar, Ramnath; Nadayil, Deenu; Nandakumar, A

    2009-01-01

    The present paper examines the problem of small numbers (<20 cases) associated with many sites of cancers in Indian cancer registries. The cancer incidence data of 14 Population Based Cancer Registries for the periods of 2001-03 and 2004-05 were utilized for the analysis. Nine out of 14 registries had more than 50% of their sites being associated with small numbers while seven registries had 50% of their sites having as low as 5 cases. Sites associated with small numbers showed a lot of variation and significant differences in their incidence rates within two years duration which are not feasible. The percentage age distribution was also found to vary with different periods. The paper has effectively shown the effect of population size on incidence rates. For a registry of population size 300,000, the incidence rate of 6 can very well be unstable. There are many registries in the world with their population size less than 200,000. Even in the case of registries with high population (>or= 500,000) the practice is to report the cancer incidence by different ethnic groups with populations less than 200,000 and thereby introduce the problem of small numbers in reporting the incidences of various cancer sites. To overcome this problem, pooling of data over broad age groups or ten years age groups or 3 to 5 years periods is one immediate solution. PMID:19827889

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

    PubMed Central

    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. PMID:26648756

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

    PubMed

    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. PMID:25419602

  18. Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology

    PubMed Central

    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.

    2015-01-01

    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 Reinvestment 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. PMID:25419602

  19. Comparative study on National Burn Registry in America, England, Australia and Iran

    PubMed Central

    Ajami, Sima; Lamoochi, Parisa

    2014-01-01

    Context: Iran experiences a high rate of burns accompanied by painful consequences, death and a lot of disabilities. In order to reduce the burden of this injury, some strategies such as designing and implementation of registration systems are essential. Aims: The aim of this study was to compare National Burn Registry in America, England, Australia and Iran. Materials and Methods: This study was comparative-descriptive in which data collected from the National Burn Registry of America, England, Australia and Iran studied in 2013. The study population included National Burn Registry of these countries and data was collected using raw data forms. Statistical Analysis Used: Data on each country was categorized according to objectives and comparisons took place using comparative tables. Finally, descriptive-theoretical analysis of the findings was performed. Results: National Security Agency and National Burn Repository in America, National Institute of Health and the Ministry of Health in England and the Department of Health and Senior in Australia are responsible for national burning registry. A seven-axial model was proposed for Iran's National Registry. America's registry system is broader than other countries due to its cooperation with Canada, Sweden and Asia. Conclusion: The aim of the Burn Registry System is to gather, store, edit, categorize, analyze and distribute all burns, injured data from all health care centers in a specific population and provide valuable information about the occurrence, time and regional distribution of burn injury. PMID:25540779

  20. Roles of cancer registries in enhancing oncology drug access in the Asia-Pacific region.

    PubMed

    Soon, Swee-Sung; Lim, Hwee-Yong; Lopes, Gilberto; Ahn, Jeonghoon; Hu, Min; Ibrahim, Hishamshah Mohd; Jha, Anand; Ko, Bor-Sheng; Lee, Pak Wai; Macdonell, Diana; Sirachainan, Ekaphop; Wee, Hwee-Lin

    2013-01-01

    Cancer registries help to establish and maintain cancer incidence reporting systems, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region. PMID:23725106

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

    PubMed Central

    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. PMID:26913191

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

    PubMed

    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. PMID:26913191

  3. National Registry on Cardiac Electrophysiology 2007 and 2008.

    PubMed

    da Silva, Manuel Nogueira; Bonhorst, Daniel; de Sousa, João

    2009-11-01

    Clinical electrophysiology remains one of the most dynamic areas of cardiology, with continuing developments in equipping centers with more modern mapping and navigation systems. This has enabled an increase in the number and variety of interventions, resulting in significant improvements in results of therapeutic ablation of arrhythmias and prevention of sudden cardiac death. In this phase of transition towards implementation of a computerized national registry with nationwide data transmitted via the internet, publication of the registry in its previous form, although requiring more work, still seems justified, in order to appraise and disseminate qualitative and quantitative developments in this activity and enable comparisons with what is being done internationally, assess the centers' training capacity and inform national and European health authorities of the activities and real needs in this sector. The authors analyze the number and type of procedures performed during 2007 and 2008 based on a survey sent to centers performing diagnostic and interventional electrophysiology (16 centers in 2007 and 2008) and/or implanting cardioverter-defibrillators (ICDs) (19 centers in 2007 and 21 in 2008). Compared to 2006, one more center began interventional electrophysiology in 2007 and two centers began implanting ICDs in 2008. In the years under review, 2060 electrophysiological studies were performed in 2007 and 2007 were performed in 2008, of which 74 and 79.5% respectively were followed by therapeutic ablation, making totals of 1523 and 1596 ablations (increases of 10.7 and 4.6% from previous years). Atrioventricular nodal reentrant tachycardia was the main indication for ablation (28.4 and 28.7%), followed by accessory pathways (26.8 and 25.4%), atrial flutter (20.8 and 19.7%), atrial fibrillation (13.9 and 14.6%), ventricular tachycardia (4.7 and 5.1%), atrial tachycardia (2.8 and 2.6%) and atrioventricular junction ablation (2.7 and 3.9%). Regarding ICDs, a

  4. A Registry for Evaluation of Efficiency and Safety of Surgical Treatment of Cartilage Defects: The German Cartilage Registry (KnorpelRegister DGOU)

    PubMed Central

    2016-01-01

    Background The need for documentation in cartilage defects is as obvious as in other medical specialties. Cartilage defects can cause significant pain, and lead to reduced quality of life and loss of function of the affected joint. The risk of developing osteoarthritis is high. Therefore, the socioeconomic burden of cartilage defects should not be underestimated. Objective The objective of our study was to implement and maintain a registry of all patients undergoing surgical treatment of cartilage defects. Methods We designed this multicenter registry for adults whose cartilage defects of a knee, ankle, or hip joint are treated surgically. The registry consists of two parts: one for the physician and one for the patient. Data for both parts will be gathered at baseline and at 6-, 12-, 24-, 36-, 60-, and 120-month follow-ups. Results To date, a wide range of German, Swiss, and Austrian trial sites are taking part in the German Cartilage Registry, soon to be followed by further sites. More than 2124 (as of January 31, 2016) cases are already documented and the first publications have been released. Conclusions The German Cartilage Registry addresses fundamental issues regarding the current medical care situation of patients with cartilage defects of knee, ankle, and hip joints. In addition, the registry will help to identify various procedure-specific complications, along with putative advantages and disadvantages of different chondrocyte products. It provides an expanding large-scale, unselected, standardized database for cost and care research for further retrospective studies. Trial Registration German Clinical Trials Register: DRKS00005617; https://drks-neu.uniklinik-freiburg.de/ drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00005617 (Archived by WebCite at http://www.webcitation.org/6hbFqSws0) PMID:27357998

  5. Complete ascertainment of Parkinson disease in the Swedish Twin Registry

    PubMed Central

    Wirdefeldt, Karin; Gatz, Margaret; Bakaysa, Stephanie L.; Fiske, Amy; Flensburg, Måns; Petzinger, Giselle M.; Widner, Håkan; Lew, Mark F.; Welsh, Mickie; Pedersen, Nancy L.

    2008-01-01

    This report describes the ascertainment of Parkinson disease (PD) in all individuals aged 50 years or older (49,814 individuals) from the Swedish Twin Registry. In phase one of the study, all twins were screened for PD using telephone interviews, with a response rate of 72.7%. In phase two, twins with suspected PD were re-contacted to exclude anyone from follow-up who reported parkinsonian symptoms due to diseases other than PD. In the third phase, in-person clinical evaluations were completed for twins who were still considered PD suspects after phase two and for a sample of co-twins. During the clinical evaluations, we also collected blood samples and information about a variety of environmental exposures. Overall prevalence rate for PD was 496 per 100,000 individuals. Among the 132 PD cases identified, there were only three concordant twin pairs. In total 7.2% of PD cases reported a first degree relative with PD. PMID:17532098

  6. Dioxin Registry report for Thompson Chemical Company, St. Louis, Missouri

    SciTech Connect

    Marlow, D.A.; Fingerhut, M.A.

    1991-01-01

    An industrial hygiene survey was conducted at the Thompson Chemical Company, St. Louis, Missouri. The company manufactured sodium-2,4,5-trichlorophenate (NaTCP), 2,4,5-trichlorophenoxyacetic-acid (2,4,5-T), and esters and amines of 2,4,5-T from 1949 through 1970. The company manufactured Agent-Orange for the Air Force from 1967 until 1969. The facility, its processes, its workforce, and 2,3,7,8-tetrachlorodibenzo-p-dioxin (1746016) (TCDD) analytical results for these products were examined. As this firm filed for bankruptcy in 1970, there was only limited data available. The facility employed about 12 persons year round and about double this number during the busy season and during the Agent-Orange contract. Almost no information was available about the production processes. Nine persons developed chloracne after an accident and fire in the NaTCP process. Few personnel records were available. The authors conclude that workers employed from 1949 through 1970 are suitable for inclusion into the Dioxin Registry. There is not enough information available to construct a TCDD exposure matrix for this site.

  7. Postirradiation sarcoma. Analysis of a nationwide cancer registry material

    SciTech Connect

    Wiklund, T.A.; Blomqvist, C.P.; Raety, J.E.; Elomaa, I.; Rissanen, P.; Miettinen, M. )

    1991-08-01

    Thirty-three cases of postirradiation sarcoma (PIS) from the files of the Finnish Cancer Registry were analyzed. The most frequent first primary tumors were cancers of the breast (seven cases) and female reproductive organs (13 cases). Five patients had a childhood cancer. The median total radiation dose at the site of the PIS was 3600 cGy (1600 cGy to 11200 cGy). The median interval from start of radiation therapy to detection of PIS was 13.2 years (3.4 to 22.8 years). The PIS was of soft tissue origin in 25 of 33 cases. The most frequent histologic types were osteosarcoma (ten cases, including four extraskeletal tumors), malignant fibrous histiocytoma (ten cases), and fibrosarcoma (six cases). The overall crude 5-year survival rate was 29% (calculated from the start of treatment for PIS), and for patients initially treated with either radical surgery or combined marginal surgery and postoperative irradiation it was 67%. The authors conclude that there is a chance for cure for radically treated patients with postirradiation sarcoma that emphasizes the importance of regular long-term follow-up of cancer patients.

  8. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-13

    ... Animal and Plant Health Inspection Service Notice of Establishment of a Veterinary Services Stakeholder... announces the availability of a new Veterinary Services email subscription service. FOR FURTHER INFORMATION... Inspection Service (APHIS) has established a Veterinary Services (VS) Stakeholder Registry, an...

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

    PubMed

    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. PMID:27577423

  10. Medical devices; revocation of cardiac pacemaker registry. Food and Drug Administration, HHS. Final rule.

    PubMed

    1999-11-24

    The Food and Drug Administration (FDA) is issuing a final rule to revoke a regulation requiring a cardiac pacemaker registry. The registry, which was mandated by the Deficit Reduction Act of 1984, requires any physician and any provider of services who requests or receives Medicare payment for an implantation, removal, or replacement of permanent cardiac pacemaker devices and pacemaker leads to submit certain information to the registry. The information is used by FDA to track the performance of permanent cardiac pacemakers and pacemaker leads and by the Health Care Finance Administration (HCFA) to administer its Medicare payment program for these devices. This action is being taken to implement an act to Repeal An Unnecessary Medical Device Reporting Requirement passed by Congress in 1996 to remove the cardiac pacemaker registry to eliminate duplicative and unnecessary reporting. PMID:11010690

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

    SciTech Connect

    Ehrhart, Susan M.; Filipy, Ronald E.

    2002-07-01

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

  12. Renal replacement therapy in Europe: a summary of the 2011 ERA–EDTA Registry Annual Report

    PubMed Central

    Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.

    2014-01-01

    Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881

  13. National exposure registry: Tichloroethylene (TCE) subregistry (on CD-ROM). Data file

    SciTech Connect

    Not Available

    1995-01-01

    The 1994 National Exposure Registry: Trichloroethylene (TCE) Subregistry' contains data on approximately 4,000 persons and is the first CD-ROM product released in the National Exposure Registry Series. This CD-ROM is composed of three files: Demographics and Health, Mortality, and Environmental. The CD-ROM includes access software, the Statistical Export and Tabulation System (SETS). The TCE subregistry is one of three (dioxin and benzene subregistries are the other two). The National Exposure Registry was created in response to a mandate given in the Comprehensive Environmental Response, Compensation and Liability Act (CERCLA) of 1980 to the Agency for Toxic Substances and Disease Registry (ATSDR) to create a registry of persons exposed to hazardous substances. This mandate was reiterated in the Superfund Amendments and Reauthorization Act (SARA) of 1986. The National Exposure Registry is a database composed of names of persons, along with additional information on these persons, with documented exposure to specific chemicals. The purpose of the Registry is to aid in assessing the long-term health consequences of low-level, long-term exposure to environmental contaminants. One of the goals is to establish a database that will furnish the information needed to generate appropriate and valid hypotheses for future activities such as epidemiological studies. When supplemented with additional data, the combined file can then be used to carry out hypothesis-testing epidemiological investigations. The data collected for each member of the Registry include environmental levels, demographic information, smoking and occupational history, and self-reported responses to 25 general health status questions. The files for each chemical-specific subregistry are established at the time baseline data are collected and are updated and maintained by ATSDR on an ongoing basis (annually the first year, biennially thereafter).

  14. Tribal Linkage and Race Data Quality for American Indians in a State Cancer Registry

    PubMed Central

    Johnson, Jennifer C.; Soliman, Amr S.; Tadgerson, Dan; Copeland, Glenn E.; Seefeld, David A.; Pingatore, Noel L.; Haverkate, Rick; Banerjee, Mousumi; Roubidoux, Marilyn A.

    2014-01-01

    Background Racial misclassification of American Indian and Alaska Native (AI/AN) individuals as non-AI/AN in cancer registries presents problems for cancer surveillance, research, and public health practice. The aim of this study was to investigate the efficiency of tribal linkages in enhancing the quality of racial information in state cancer registries. Methods Registry Plus™ Link Plus 2.0 probabilistic record linkage software was used to link the Michigan state cancer registry data (1985–2004; 1,031,168 cancer cases) to the tribal membership roster (40,340 individuals) in July of 2007. A data set was created containing AI/AN cancer cases identified by the state registry, Indian Health Service (IHS) linkages, and tribal linkage. The differences between these three groups of individuals were compared by distribution of demographic, diagnostic, and county-level characteristics using multilevel analysis (conducted in 2007–2008). Results From 1995 to 2004, the tribal enrollment file showed linkages to 670 cancer cases (583 individuals) and the tribal linkage led to the identification of 190 AI/AN cancer cases (168 individuals) that were classified as non-AI/AN in the registry. More than 80% of tribal members were reported as non-AI/AN to the registry. Individuals identified by IHS or tribal linkages were different from those reported to be AI/AN in terms of stage at diagnosis, tumor confirmation, and characteristics of the county of diagnosis, including contract health services availability, tribal health services availability, and proportion of AI/AN residents. Conclusions The data linkage between tribal and state cancer registry data sets improved racial classification validity of AI/AN Michigan cancer cases. Assessing tribal linkages is a simple, noninvasive way to improve the accuracy of state cancer data for AI/AN populations and to generate tribe-specific cancer information. PMID:19356888

  15. Improving Patient Outcomes in Gynecology: The Role of Large Data Registries and Big Data Analytics.

    PubMed

    Erekson, Elisabeth A; Iglesia, Cheryl B

    2015-01-01

    Value-based care is quality health care delivered effectively and efficiently. Data registries were created to collect accurate information on patients with enough clinical information to allow for adequate risk adjustment of postoperative outcomes. Because most gynecologic procedures are elective and preference-sensitive, offering nonsurgical alternatives is an important quality measure. The Center for Medicare and Medicaid Services (CMS), in conjunction with mandates from the Affordable Care Act, passed by Congress in 2010, has developed several initiatives centered on the concept of paying for quality care, and 1 of the first CMS initiatives began with instituting payment penalties for hospital-acquired conditions, such as catheter-associated urinary tract infections, central line-associated bloodstream infections, and surgical site infections. Registries specific to gynecology include the Society for Assisted Reproductive Technology registry established in 1996; the FIBROID registry established in 1999; the Pelvic Floor Disorders Registry established by the American Urogynecologic Society in conjunction with other societies (2014); and the Society of Gynecologic Oncologists Clinical Outcomes Registry. Data from these registries can be used to critically analyze practice patterns, find best practices, and enact meaningful changes in systems and workflow. The ultimate goal of data registries and clinical support tools derived from big data is to access accurate and meaningful data from electronic records without repetitive chart review or the need for direct data entry. The most efficient operating systems will include open-access computer codes that abstract data, in compliance with privacy regulations, in real-time to provide information about our patients, their outcomes, and the quality of care that we deliver. PMID:26188310

  16. The NeuroAiD Safe Treatment (NeST) Registry: a protocol

    PubMed Central

    Venketasubramanian, Narayanaswamy; Kumar, Ramesh; Soertidewi, Lyna; Abu Bakar, Azizi; Laik, Carine; Gan, Robert

    2015-01-01

    Introduction NeuroAiD (MLC601, MLC901), a combination of natural products, has been shown to be safe and to aid neurological recovery after brain injuries. The NeuroAiD Safe Treatment (NeST) Registry aims to assess its use and safety in the real-world setting. Methods and analysis The NeST Registry is designed as a product registry that would provide information on the use and safety of NeuroAiD in clinical practice. An online NeST Registry was set up to allow easy entry and retrieval of essential information including demographics, medical conditions, clinical assessments of neurological, functional and cognitive state, compliance, concomitant medications, and side effects, if any, among patients on NeuroAiD. Patients who are taking or have been prescribed NeuroAiD may be included. Participation is voluntary. Data collected are similar to information obtained during standard care and are prospectively entered by the participating physicians at baseline (before initialisation of NeuroAiD) and during subsequent visits. The primary outcome assessed is safety (ie, non-serious and serious adverse event), while compliance and neurological status over time are secondary outcomes. The in-person follow-up assessments are timed with clinical appointments. Anonymised data will be extracted and collectively analysed. Initial target sample size for the registry is 2000. Analysis will be performed after every 500 participants entered with completed follow-up information. Ethics and dissemination Doctors who prescribe NeuroAiD will be introduced to the registry by local partners. The central coordinator of the registry will discuss the protocol and requirements for implementation with doctors who show interest. Currently, the registry has been approved by the Ethics Committees of Universiti Kebangsaan Malaysia (Malaysia) and National Brain Center (Indonesia). In addition, for other countries, Ethics Committee approval will be obtained in accordance with local requirements. Trial

  17. The importance of national registries/databases in metabolic surgery: the UK experience.

    PubMed

    Hopkins, James; Welbourn, Richard

    2016-07-01

    The United Kingdom (UK) National Bariatric Surgery Registry (NBSR) is a registry of self-reported bariatric surgery from members of the British Obesity and Metabolic Surgery Society. We describe the registry and its usefulness and limitations in improving the knowledge base for metabolic and bariatric surgery, reviewing the main results for the first 5 years of its introduction since 2009. We also review the reports of other national and international bariatric surgery registries and compare the baseline characteristics, including metabolic parameters, of the patients entered into the NBSR. A total of 161 surgeons from 137 UK bariatric surgery units entered 32,212 anonymized patient records. Of these patients, 76% were female, mean weight at preoperative clinic was 135.6 kg, body mass index was 48.8 kg/m(2), and 76.5 % had publicly funded National Health Service treatment. The 3 most common procedures were gastric bypass (55.3%), gastric banding (20.4%), and sleeve gastrectomy (20.2%), although the prevalence of these changed over time and was different between public and private sectors. The 2-year rate for diabetes improvement was 61.5%, but this varied with the duration of diabetes and baseline diabetic therapy. The data were similar to those from other large registries. Establishment of large national registries such as the NBSR has the potential to provide "real-world" information for quality assurance and the effect of metabolic and bariatric surgery on the whole operated population. PMID:27313193

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

    PubMed Central

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

    2015-01-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  19. Connecting Communities to Health Research: Development of the Project CONNECT Minority Research Registry

    PubMed Central

    Green, Melissa A.; Kim, Mimi M.; Barber, Sharrelle; Odulana, Abedowale A.; Godley, Paul A.; Howard, Daniel L.; Corbie-Smith, Giselle M.

    2013-01-01

    Introduction Prevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members. Methods We describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics. Results During the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry. Conclusions A health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations. PMID:23340183

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

    PubMed

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

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  1. [What can we learn in future from the data of the German Arthroplasty Registry (EPRD) in comparison to other registries?].

    PubMed

    Jansson, V; Steinbrück, A; Hassenpflug, J

    2016-06-01

    The German Arthroplasty Registry (EPRD) was founded in 2010 and has been in full operation since 2014. Previous attempts at a systematic data collection of elective and non-elective knee and hip replacement in Germany failed mainly because of the long-term lack of funding. The EPRD is an interdisciplinary collaborative partnership between the German Association of Orthopedics and Orthopedic Surgery (DGOOC), all implant manufacturers of the German Medical Technology Association (BVMed), health insurers (AOK and the Association of Additional Healthcare Insurance) and hospitals (German Hospital Federation). As part of this cooperation a worldwide unique implant database has been set up, which includes all relevant components and a detailed description of implant specifications. This implant library enables a detailed evaluation of implant survival, revision rates and possible inferior implant performance of knee and hip replacements in Germany. At the end of 2015 the EPRD encompassed over 200,000 registered operations. Due to the high number of hip and knee arthroplasties in Germany with many different implants from different manufacturers there will be a rapid growth of data that are available for a national and also international comparison of the results. PMID:27160728

  2. [Post-authorization research, registries, and drug development].

    PubMed

    Patarnello, Francesca; Recchia, Giuseppe

    2013-06-01

    In the last decade regulators, payers and health care providers tried to react to three major problems in drug development and drug use in clinical practice: the pharmaceutical R&D productivity crisis, the immaturity of benefit-risk profile for several newly approved drugs and the overall impact on economic sustainability of reimbursing new high cost drugs in their systems. The potentiality of create a continuum between the evidence requirements relevant for registration, for reimbursement and for post authorization research is clear. All different parties involved, like regulators, HTA agencies, scientific communities and manufacturers, are working to improve the knowledge profile of new drugs in order to anticipate the patient access to innovation, limiting or preventing the clinical and economical risks deriving from an incomplete safety and effectiveness profile. The Italian example of "New Drugs AIFA Registries", with or without the application of risk sharing schemes (cost sharing, pay for performance, etc.), introduced a new process and increased the sensitivity on this topic. However this might probably represents only a partial answer to the problem of how to set up the governance of coverage with evidence, drug utilization monitoring, comparative effectiveness research, outcome research programs and may be how to link them to access, pricing and reimbursement. The step change in post authorization research could be to "integrate" different sources and stakeholders in a wider and continuous approach, in a well designed and inclusive "second generation" HTA approach, where all resources (competencies, data, funding) will concur to increase the evidence profile and reduce the risks, and where any "evidence generation approach" is really compliant with the standard and rules of best research practices. PMID:23801233

  3. Arrive: A retrospective registry of Indian patients with venous thromboembolism

    PubMed Central

    Kamerkar, Dhanesh R.; John, M. Joseph; Desai, Sanjay C.; Dsilva, Liesel C.; Joglekar, Sadhna J.

    2016-01-01

    Background and Aim: There is lack of substantial Indian data on venous thromboembolism (VTE). The aim of this study was to provide real-world information on patient characteristics, management strategies, clinical outcomes, and temporal trends in VTE. Subjects and Methods: Multicentre retrospective registry involving 549 medical records of patients with confirmed diagnosis of VTE (deep vein thrombosis [DVT] confirmed by Doppler ultrasonography; pulmonary embolism [PE] by computed tomography, pulmonary angiography and/or V/Q scan) from 2006 to 2010 at three Indian tertiary care hospitals. Results: Acute DVT without PE, acute DVT with PE, and PE alone were reported in 64% (352/549), 23% (124/549), and 13% (73/549) patients, respectively. Mean age was 47 (±16) years, and 70% were males. H/o DVT (34%), surgery including orthopedic surgery (28%), trauma (16%), and immobilization >3 days (14%) were the most common risk factors for VTE. Hypertension (25%), diabetes (19%), and neurological disease (other than stroke) (8%) were the most common co-morbidities. Most (94%) were treated with heparin alone (82%) or fondaparinux (2%) for initial anticoagulation; low molecular weight heparin alone (5%) or warfarin/acenocoumarol (76%) for long-term anticoagulation. Anticoagulant treatment was stopped because of bleeding in 2% (9/515) patients. Mortality was 7% among patients diagnosed with VTE during hospital stay versus 1% in those hospitalized with diagnosed VTE. The annual incidence of DVT (±PE) increased from 2006 to 2010. Conclusion: Acute DVT alone was responsible for the substantial burden of VTE in Indian patients. Bleeding was not the limiting factor for anticoagulant treatment in most patients. PMID:27076726

  4. Pancreas Transplantation—Registry Report and a Commentary

    PubMed Central

    Sutherland, David E. R.; Kendall, David M.

    1985-01-01

    From December 1966 through December 1984, there were 561 pancreas transplants reported to the American College of Surgeons/National Institutes of Health Organ Transplant Registry, including 60 from 1966 through June 1977, 206 from July 1977 through December 1982 and 295 from January 1983 through December 1984. One-year graft function-survival rates (insulin-independent) in each of the three periods were 3%, 20% and 40%, and the corresponding patient survival rates were 40%, 72% and 77%. Currently 140 patients have functioning grafts, 76 for more than one year. Of the transplants since July 1977, one-year graft survival rates according to technique are 41% for enteric drainage (N = 155), 30% for polymer injection (N = 260) and 29% for urinary drainage (N = 47). Pancreas graft survival rates at one year according to whether or not the recipients have had a kidney transplant were 35% for recipients of simultaneous grafts (N = 281), 28% in recipients of a pancreas after a kidney (N = 112) and 26% in recipients of a pancreas only who did not have uremia (N = 106); corresponding patient survival rates were 69%, 83% and 83%. Overall, one-year pancreas graft survival rates according to whether the patients did or did not have end-stage diabetic nephropathy were 33% versus 25% and the corresponding patient survival rates were 73% versus 84% (P < .01). Patient survival rates were significantly higher in those without than in those with end-stage diabetic nephropathy. An analysis of technically successful grafts according to principal immunosuppressant showed one-year function rates of 46% in 258 cyclosporine-treated recipients and 26% in 143 azathioprine-treated recipients. Pancreas graft survival rates have progressively improved and the procedure has become safer with advances in surgical technique and immunosuppression. Pancreas transplantation is currently applicable to patients with diabetes mellitus whose complications are, or predictably will be, more serious than the

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

    ERIC Educational Resources Information Center

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

    2013-01-01

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

  6. Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.

    PubMed

    Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns

    2016-07-01

    Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally. PMID:27159994

  7. Contemporary registries on P2Y12 inhibitors in patients with acute coronary syndromes in Europe: overview and methodological considerations.

    PubMed

    Jukema, J Wouter; Lettino, Maddalena; Widimský, Petr; Danchin, Nicolas; Bardaji, Alfredo; Barrabes, Jose A; Cequier, Angel; Claeys, Marc J; De Luca, Leonardo; Dörler, Jakob; Erlinge, David; Erne, Paul; Goldstein, Patrick; Koul, Sasha M; Lemesle, Gilles; Lüscher, Thomas F; Matter, Christian M; Montalescot, Gilles; Radovanovic, Dragana; Lopez-Sendón, Jose; Tousek, Petr; Weidinger, Franz; Weston, Clive F M; Zaman, Azfar; Zeymer, Uwe

    2015-10-01

    Patient registries that document real-world clinical experience play an important role in cardiology as they complement the data from randomized controlled trials, provide valuable information on drug use and clinical outcomes, and evaluate to what extent guidelines are followed in practice. The Platelet Inhibition Registry in ACS EvalUation Study (PIRAEUS) project is an initiative of registry holders who are managing national or international registries observing patients with acute coronary syndromes (ACS). The aim of PIRAEUS is to systematically compare and combine available information/insights from various European ACS registries with a focus on P2Y12 inhibitors. The present publication introduces the 17 participating registries in a narrative and tabular form, and describes which ACS groups and which dual antiplatelet therapies were investigated. It sets the basis for upcoming publications that will focus on effectiveness and safety of the antiplatelets used. PMID:27532447

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

    PubMed

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

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. PMID:24700441

  9. Paediatric cancer stage in population-based cancer registries: the Toronto consensus principles and guidelines.

    PubMed

    Gupta, Sumit; Aitken, Joanne F; Bartels, Ute; Brierley, James; Dolendo, Mae; Friedrich, Paola; Fuentes-Alabi, Soad; Garrido, Claudia P; Gatta, Gemma; Gospodarowicz, Mary; Gross, Thomas; Howard, Scott C; Molyneux, Elizabeth; Moreno, Florencia; Pole, Jason D; Pritchard-Jones, Kathy; Ramirez, Oscar; Ries, Lynn A G; Rodriguez-Galindo, Carlos; Shin, Hee Young; Steliarova-Foucher, Eva; Sung, Lillian; Supriyadi, Eddy; Swaminathan, Rajaraman; Torode, Julie; Vora, Tushar; Kutluk, Tezer; Frazier, A Lindsay

    2016-04-01

    Population-based cancer registries generate estimates of incidence and survival that are essential for cancer surveillance, research, and control strategies. Although data on cancer stage allow meaningful assessments of changes in cancer incidence and outcomes, stage is not recorded by most population-based cancer registries. The main method of staging adult cancers is the TNM classification. The criteria for staging paediatric cancers, however, vary by diagnosis, have evolved over time, and sometimes vary by cooperative trial group. Consistency in the collection of staging data has therefore been challenging for population-based cancer registries. We assembled key experts and stakeholders (oncologists, cancer registrars, epidemiologists) and used a modified Delphi approach to establish principles for paediatric cancer stage collection. In this Review, we make recommendations on which staging systems should be adopted by population-based cancer registries for the major childhood cancers, including adaptations for low-income countries. Wide adoption of these guidelines in registries will ease international comparative incidence and outcome studies. PMID:27300676

  10. Leveraging effective clinical registries to advance medical care quality and transparency.

    PubMed

    Klaiman, Tamar; Pracilio, Valerie; Kimberly, Laura; Cecil, Kate; Legnini, Mark

    2014-04-01

    Policy makers, payers, and the general public are increasingly focused on health care quality improvement. Measuring quality requires robust data systems that collect data over time, can be integrated with other systems, and can be analyzed easily for trends. The goal of this project was to study effective tools and strategies in the design and use of clinical registries with the potential to facilitate quality improvement, value-based purchasing, and public reporting on the quality of care. The research team worked with an expert panel to define characteristics of effectiveness, and studied examples of effective registries in cancer, cardiovascular care, maternity, and joint replacement. The research team found that effective registries were successful in 1 or more of 6 key areas: data standardization, transparency, accuracy/completeness of data, participation by providers, financial sustainability, and/or providing feedback to providers. The findings from this work can assist registry designers, sponsors, and researchers in implementing strategies to increase the use of clinical registries to improve patient care and outcomes. PMID:24152057

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

    PubMed

    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

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

    PubMed Central

    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

  13. Comprehensive capture of cutaneous melanoma by the Ontario Cancer Registry: validation study using community pathology reports.

    PubMed

    Tran, Jennifer M; Schwartz, Rodrigo; Fung, Kinwah; Rochon, Paula; Chan, An-Wen

    2016-01-01

    Melanoma is often managed outside hospital settings, creating the potential for underreporting to cancer registries. To our knowledge, completeness of melanoma capture in cancer registries has not been assessed using external data sources since the 1980s. We evaluated the melanoma capture rate from 1993 to 2009 in a provincial cancer registry. We identified all melanoma diagnoses in pathology reports from a major community laboratory in Ontario, Canada. Pathologically confirmed diagnoses were linked to Ontario Cancer Registry (OCR) records using health insurance numbers. We calculated capture rates as the proportion of patients with melanoma confirmed by a pathology report, with a corresponding melanoma diagnosis in OCR. OCR captured 3,798 of 4,275 (88.8, 95 % confidence interval: 87.9, 89.8 %) invasive melanoma diagnoses over the 17-year period. Annual capture rates of 94 % or higher were found for over half the study period. Among all 29,133 melanoma diagnoses in OCR, 27.6 % were registered based on a pathology report alone, compared with 3.4 % for non-cutaneous malignancies. This suggests that comprehensive capture of melanoma cases by a provincial cancer registry is achievable using source data from community laboratories. There is a need for ongoing validation to ensure data remain accurate and complete to reliably inform clinical care, research, and policy. PMID:26537120

  14. Transcatheter valve therapy registry is a model for medical device innovation and surveillance.

    PubMed

    Carroll, John D; Shuren, Jeff; Jensen, Tamara Syrek; Hernandez, John; Holmes, David; Marinac-Dabic, Danica; Edwards, Fred H; Zuckerman, Bram D; Wood, Larry L; Kuntz, Richard E; Mack, Michael J

    2015-02-01

    Heart valve diseases are increasingly prevalent, especially in people older than age seventy. Many of these elderly people have other comorbid conditions, making them poor candidates for surgical treatment of heart valve diseases. Since 2011 such patients have been eligible to receive new nonsurgical heart valve treatments approved by the Food and Drug Administration (FDA) and covered by Medicare. This article examines the Transcatheter Valve Therapy Registry, which captures clinical information on all US patients undergoing new nonsurgical heart valve treatments. The registry has patient-level data from more than 27,000 patients treated with the novel devices. Patient- and procedure-related data are gathered from hospitals, patient-reported outcomes are assessed pre- and postprocedure, and longer-term data on mortality and repeat hospitalization are provided by linking the registry's data to Medicare patient data. The registry is a model of collaboration among professional societies, the FDA, the Centers for Medicare and Medicaid Services, hospitals, patients, and the medical device industry. It has been used to support Medicare coverage decisions, expand device indications, provide comprehensive device surveillance, and establish national quality benchmarks. Beyond having it serve as a collaborative model, future goals for the registry include shortening the FDA-approval timeline for devices, providing data for decision-making tools for patients, and public reporting of hospital performance. PMID:25646114

  15. New Zealand Joint Registry data underestimates the rate of prosthetic joint infection.

    PubMed

    Zhu, Mark; Ravi, Saiprasad; Frampton, Chris; Luey, Chris; Young, Simon

    2016-08-01

    Background and purpose - Recent studies have revealed deficiencies in the accuracy of data from joint registries when reoperations for prosthetic joint infections (PJIs) are reported, particularly when no components are changed. We compared the accuracy of data from the New Zealand Joint Registry (NZJR) to a multicenter audit of hospital records to establish the rate of capture for PJI reoperations. Methods - 4,009 cases undergoing total knee or hip arthroplasty performed at 3 tertiary referral hospitals over a 3-year period were audited using multiple hospital datasets and the NZJR. The number of reoperations for PJI that were performed within 2 years of the primary arthroplasty was obtained using both methods and the data were compared. Results - The NZJR reported a 2-year reoperation rate for PJI of 0.67%, as compared to 1.1% from the audit of hospital records, giving the NZJR a sensitivity of 63%. Only 4 of 11 debridement-in-situ-only procedures and 7 of 12 modular exchange procedures were captured in the NZJR. Interpretation - The national joint registry underestimated the rate of reoperation for PJI by one third. Strategies for improving the accuracy of data might include revising and clarifying the registry forms to include all reoperations for PJI and frequent validation of the registry data against other databases. PMID:27348450

  16. The National Anesthesia Clinical Outcomes Registry: A Sustainable Model for the Information Age?

    PubMed Central

    Dutton, Richard P.

    2014-01-01

    Anesthesiologists care for patients of all ages, with all conceivable comorbidities, in every kind of health care facility. This leads to a significant challenge in the collection of data to describe the specialty, and in the development of evidence-based performance measures for anesthesiologists. Whereas narrowly defined medical specialties have developed registries based on manual abstraction of clinical data from the medical record (e.g., cardiac surgery), this approach would be prohibitively expensive for anesthesiology, and is unlikely to generate statistically useful data when major adverse outcomes occur a handful of times in tens of thousands of cases. The American Society of Anesthesiologists (ASA) addressed this challenge in 2008 by funding a related organization, the Anesthesia Quality Institute (AQI), to develop the National Anesthesia Clinical Outcomes Registry (NACOR). The technical development of this registry and the approach taken to define the specialty of anesthesiology and the performance of anesthesiologists may serve as a model for other specialty society efforts. PMID:25848607

  17. ['Which breast implant do I have?'; the importance of the Dutch Breast Implant Registry].

    PubMed

    Hommes, Juliëtte; Mureau, Marc A M; Harmsen, Manuel; Rakhorst, Hinne

    2015-01-01

    About 1 in 300 women in the Netherlands has a breast implant but many patients do not know what type of implant was inserted. The quality of breast implants is currently monitored by the implant manufacturers. Sufficient incidents have occurred to show that an independent registry is required to measure the quality of breast implants and to facilitate a national recall, if necessary. Good national and international collaboration with the government, the manufacturers and other specialist associations is crucial for setting up an implant registry. Since April 2015, data about patients and their implants have been collected, independently and prospectively, in the Dutch Breast Implant Registry to increase patient safety in cases of breast implant surgery in the Netherlands. PMID:26980465

  18. Development of a disease registry for autoimmune bullous diseases: initial analysis of the pemphigus vulgaris subset.

    PubMed

    Shah, Amit Aakash; Seiffert-Sinha, Kristina; Sirois, David; Werth, Victoria P; Rengarajan, Badri; Zrnchik, William; Attwood, Kristopher; Sinha, Animesh A

    2015-01-01

    Pemphigus vulgaris (PV) is a rare, potentially life threatening, autoimmune blistering skin disease. The International Pemphigus and Pemphigoid Foundation (IPPF) has recently developed a disease registry with the aim to enhance our understanding of autoimmune bullous diseases with the long-term goal of acquiring information to improve patient care. Patients were recruited to the IPPF disease registry through direct mail, e-mail, advertisements, and articles in the IPPF-quarterly, -website, -Facebook webpage, and IPPF Peer Health Coaches to complete a 38-question survey. We present here the initial analysis of detailed clinical information collected on 393 PV patients. We report previously unrecognized gender differences in terms of lesion location, autoimmune comorbidity, and delay in diagnosis. The IPPF disease registry serves as a useful resource and guide for future clinical investigation. PMID:24691863

  19. [Pre-requisites, observations and benefits of the DGU trauma registry in Austria].

    PubMed

    Mattiassich, G; Litzlbauer, W; Ortmaier, R

    2016-07-01

    The trauma registry of the DGU was founded in 1992 with the objective of collecting data on severely injured patients. The purpose of this registry, in which Austrian trauma units have taken part since 1998, is to answer questions related to the field of trauma management. Using the example of the Linz Trauma Center (UKH Linz), which has actively participated since 2012, the authors would like to share their experiences of collecting data in order to motivate other departments to participate in the trauma registry. We would like to make suggestions regarding implementation methods for high-quality data acquisition.However, the availability of essential human resources must be guaranteed, since the recording of data from severely injured patients sometimes takes 60-90 min. Additionally, an automatic data acquisition method is currently unavailable for technical reasons. PMID:27277937

  20. Substrate stiffness-modulated registry phase correlations in cardiomyocytes map structural order to coherent beating

    NASA Astrophysics Data System (ADS)

    Dasbiswas, K.; Majkut, S.; Discher, D. E.; Safran, Samuel A.

    2015-01-01

    Recent experiments show that both striation, an indication of the structural registry in muscle fibres, as well as the contractile strains produced by beating cardiac muscle cells can be optimized by substrate stiffness. Here we show theoretically how the substrate rigidity dependence of the registry data can be mapped onto that of the strain measurements. We express the elasticity-mediated structural registry as a phase-order parameter using a statistical physics approach that takes the noise and disorder inherent in biological systems into account. By assuming that structurally registered myofibrils also tend to beat in phase, we explain the observed dependence of both striation and strain measurements of cardiomyocytes on substrate stiffness in a unified manner. The agreement of our ideas with experiment suggests that the correlated beating of heart cells may be limited by the structural order of the myofibrils, which in turn is regulated by their elastic environment.

  1. Substrate stiffness-modulated registry phase correlations in cardiomyocytes map structural order to coherent beating.

    PubMed

    Dasbiswas, K; Majkut, S; Discher, D E; Safran, Samuel A

    2015-01-01

    Recent experiments show that both striation, an indication of the structural registry in muscle fibres, as well as the contractile strains produced by beating cardiac muscle cells can be optimized by substrate stiffness. Here we show theoretically how the substrate rigidity dependence of the registry data can be mapped onto that of the strain measurements. We express the elasticity-mediated structural registry as a phase-order parameter using a statistical physics approach that takes the noise and disorder inherent in biological systems into account. By assuming that structurally registered myofibrils also tend to beat in phase, we explain the observed dependence of both striation and strain measurements of cardiomyocytes on substrate stiffness in a unified manner. The agreement of our ideas with experiment suggests that the correlated beating of heart cells may be limited by the structural order of the myofibrils, which in turn is regulated by their elastic environment. PMID:25597833

  2. TAVR update: Contemporary data from the UK TAVI and US TVT registries

    PubMed Central

    Suradi, Hussam S.; Hijazi, Ziyad M.

    2015-01-01

    The introduction of transcatheter aortic valve replacement (TAVR in US - TAVI in Europe) has resulted in a paradigm shift in the treatment of patients with severe aortic stenosis. Although three randomized trials and multiple single-center and multicenter registry studies have been published, the profile and longer-term outcome of patients undergoing transcatheter aortic valve replacement (TAVR) in patients with severe aortic stenosis have been limited. The recently published reports from the United Kingdom (UK)1 and United States (US)2 TAVR registries add tremendously to the currently available literature. These studies provide an excellent model to clinicians that would aid in the proper patient selection and help in guiding discussions with patients who are undergoing TAVR. The present review discusses the recently published UK and US TAVR registry data. PMID:26779507

  3. Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

    SciTech Connect

    Walker, Gary V.; Giordano, Sharon H.; Williams, Melanie; Jiang, Jing; Niu, Jiangong; MacKinnon, Jill; Anderson, Patricia; Wohler, Brad; Sinclair, Amber H.; Boscoe, Francis P.; Schymura, Maria J.; Buchholz, Thomas A.; Smith, Benjamin D.

    2013-07-15

    Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ{sup 2} were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York, and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data.

  4. A Protocol for the Secure Linking of Registries for HPV Surveillance

    PubMed Central

    El Emam, Khaled; Samet, Saeed; Hu, Jun; Peyton, Liam; Earle, Craig; Jayaraman, Gayatri C.; Wong, Tom; Kantarcioglu, Murat; Dankar, Fida; Essex, Aleksander

    2012-01-01

    Introduction In order to monitor the effectiveness of HPV vaccination in Canada the linkage of multiple data registries may be required. These registries may not always be managed by the same organization and, furthermore, privacy legislation or practices may restrict any data linkages of records that can actually be done among registries. The objective of this study was to develop a secure protocol for linking data from different registries and to allow on-going monitoring of HPV vaccine effectiveness. Methods A secure linking protocol, using commutative hash functions and secure multi-party computation techniques was developed. This protocol allows for the exact matching of records among registries and the computation of statistics on the linked data while meeting five practical requirements to ensure patient confidentiality and privacy. The statistics considered were: odds ratio and its confidence interval, chi-square test, and relative risk and its confidence interval. Additional statistics on contingency tables, such as other measures of association, can be added using the same principles presented. The computation time performance of this protocol was evaluated. Results The protocol has acceptable computation time and scales linearly with the size of the data set and the size of the contingency table. The worse case computation time for up to 100,000 patients returned by each query and a 16 cell contingency table is less than 4 hours for basic statistics, and the best case is under 3 hours. Discussion A computationally practical protocol for the secure linking of data from multiple registries has been demonstrated in the context of HPV vaccine initiative impact assessment. The basic protocol can be generalized to the surveillance of other conditions, diseases, or vaccination programs. PMID:22768321

  5. Inhibitors in haemophilia: what have we learned from registries? A systematic review.

    PubMed

    Osooli, M; Berntorp, E

    2015-01-01

    Congenital haemophilia A and B are genetic disorders affecting factor VIII and factor IX production, respectively. Factor replacement is the only effective treatment for these deficiencies, but a patient's immune system can develop inhibitory antibodies which bind and interfere with the function of the replaced factor in a variety of ways. The main treatment goal for patients with inhibitors is to induce immune tolerance to the injected factor. If not successful, a different treatment termed bypass therapy is needed to treat bleeds. The goal of this review is to demonstrate the usefulness of haemophilia registries as information sources to supplement available evidence regarding predictors of inhibitor development and immune tolerance induction (ITI) outcomes. In this systematic review, relevant keywords were used to search online academic databases during February 2014. Inclusion criteria were original publication and data obtained from a haemophilia or ITI registry with a minimum of 30 patients. A data collection form was created to extract information from selected manuscripts. Titles, abstracts and then full texts were screened to determine the eligibility of reports for this review. Eleven manuscripts from nine registries were determined eligible and included in the study. Registries have reported on some core variables, but are inconsistent in reporting less practiced predicting variables. Variables that may affect inhibitor and ITI outcomes were each divided into two categories: patient characteristics (such as age and family history) and treatment-related variables (including exposure days, treatment duration and dose). It is recommended that, in addition to exploratory hypothesis testing, a minimum set of variables should be collected and reported by registries. International collaboration and well-designed prospective registries are of major importance to advance this field in order to determine inhibitor risks and ITI outcomes and facilitate the

  6. Development, Implementation, and Use of a Local and Global Clinical Registry for Neurosurgery.

    PubMed

    Kondziolka, Douglas; Cooper, Benjamin T; Lunsford, L Dade; Silverman, Joshua

    2015-06-01

    Physicians are being challenged to obtain data for outcomes research and measures of quality practice in medicine. We developed a prospective data collection system (registry) that provides data points across all elements of a neurosurgical stereotactic radiosurgery practice. The registry architecture is scalable and suitable for any aspect of neurosurgical practice. Our purpose was to outline the challenges in creating systems for high quality data acquisition and describe experiences in initial testing and use. Over a two year period, a multicenter team working with software engineers developed a comprehensive radiosurgery registry based on a MS-Sequel® server platform. Three neurosurgeons at one center were responsible for final editing. Alpha testing began in September 2012 and server-based beta testing began in February 2013. The major elements included demographics, disease-based items (47 categories for different brain tumors, vascular malformations, and functional disorders) with relevant clinical grading systems, treatment-based items (imaging, physics, clinical), and follow-up data (clinical, imaging, subsequent therapeutics). Nine hundred patients were entered into the registry at one test center, with new entries and follow-up data entered daily at the point of contact. With experience, the mean time for one new entry was 6 minutes. Mean time for one follow-up entry was 45 seconds. The system was made secure for individual use and amenable for both data entry and research. Analytics used different filters to create customized outcomes charts as selected by the user (e.g., survival, neurologic function, complications). A local or multicenter prospective data collection registry was created for use across 47 clinical indications for stereotactic cranial radiosurgery. Further refinement of fields and logic is ongoing. The system is reliable, robust, and allows use of rapid analytical tools. Large medical registries will become widely used for collection

  7. An i2b2-based, generalizable, open source, self-scaling chronic disease registry

    PubMed Central

    Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E; Wallace, Carol A; Warren, Robert W; Weber, Griffin M; Mandl, Kenneth D

    2013-01-01

    Objective Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Materials and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. Results The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. Discussion We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. Conclusions The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases. PMID:22733975

  8. Registry-based outcome assessment in haemophilia: a scoping study to explore the available evidence.

    PubMed

    Osooli, M; Berntorp, E

    2016-06-01

    Haemophilia is a congenital disorder with bleeding episodes as its primary symptom. These episodes can result in negative outcomes including joint damage, loss of active days due to hospitalization and reduced quality of life. Effective treatment, however, can improve the outcome. Registries have been used as a valuable source of information regarding the monitoring of treatment and outcome. The two main aims of this exploratory study were to establish which haemophilia registries publish peer-reviewed outcome assessment research and then to extract, classify and report the treatment outcomes and their extent of use in the retrieved registries. Using relevant keywords, we searched PubMed and Web of Science databases for publications during the period 1990-2015. Retrieved references were screened in a stepwise process. Eligible papers were original full articles on haemophilia outcomes that used data from a computerized patient database. Descriptive results were summarized. Of 2352 references reviewed, 25 full texts were eligible for inclusion in the study. These papers were published by 11 registries ranging from local to international in coverage. It is still relatively rare for registries to produce peer-reviewed publications about outcomes, and most that currently do produce such papers are located in Europe and North America. More information is available on traditional outcomes such as comorbidities and arthropathy than on health-related quality of life or the social and developmental impact of haemophilia on patients. Inhibitors, HIV and viral hepatitis are amongst the most commonly reported comorbidities. Research has focused more on factor consumption and less on hospitalization or time lost at school or work due to haemophilia. Haemophilia registries, especially those at the national level, are valuable resources for the delivery of effective health care to patients. Validated outcome measurement instruments are essential for the production of reliable and

  9. SpineData – a Danish clinical registry of people with chronic back pain

    PubMed Central

    Kent, Peter; Kongsted, Alice; Jensen, Tue Secher; Albert, Hanne B; Schiøttz-Christensen, Berit; Manniche, Claus

    2015-01-01

    Background Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry (SpineData) in a conservative care setting where more than 10,000 new cases of spinal pain are assessed each year. This paper describes the SpineData registry, summarizes the characteristics of its clinical population and data, and signals the availability of these data as a resource for collaborative research projects. Methods The SpineData registry is an Internet-based system that captures patient data electronically at the point of clinical contact. The setting is the government-funded Medical Department of the Spine Centre of Southern Denmark, Hospital Lillebaelt, where patients receive a multidisciplinary assessment of their chronic spinal pain. Results Started in 2011, the database by early 2015 contained information on more than 36,300 baseline episodes of patient care, plus the available 6-month and 12-month follow-up data for these episodes. The baseline questionnaire completion rate has been 93%; 79% of people were presenting with low back pain as their main complaint, 6% with mid-back pain, and 15% with neck pain. Collectively, across the body regions and measurement time points, there are approximately 1,980 patient-related variables in the database across a broad range of biopsychosocial factors. To date, 36 research projects have used data from the SpineData registry, including collaborations with researchers from Denmark, Australia, the United Kingdom, and Brazil. Conclusion We described the aims, development, structure, and content of the SpineData registry, and what is known about any attrition bias and cluster effects in the data. For epidemiology research, these data can be linked, at an individual patient level, to the Danish population-based registries and the national spinal surgery registry. SpineData also has potential for the

  10. Use of patient registries and administrative datasets for the study of pediatric cancer.

    PubMed

    Rice, Henry E; Englum, Brian R; Gulack, Brian C; Adibe, Obinna O; Tracy, Elizabeth T; Kreissman, Susan G; Routh, Jonathan C

    2015-09-01

    Analysis of data from large administrative databases and patient registries is increasingly being used to study childhood cancer care, although the value of these data sources remains unclear to many clinicians. Interpretation of large databases requires a thorough understanding of how the dataset was designed, how data were collected, and how to assess data quality. This review will detail the role of administrative databases and registry databases for the study of childhood cancer, tools to maximize information from these datasets, and recommendations to improve the use of these databases for the study of pediatric oncology. PMID:25807938

  11. Cancer incidence in Ghana, 2012: evidence from a population-based cancer registry

    PubMed Central

    2014-01-01

    Background Data on cancers is a challenge in most developing countries. Population-based cancer registries are also not common in developing countries despite the usefulness of such registries in informing cancer prevention and control programmes. The availability of population-based data on cancers in Africa varies across different countries. In Ghana, data and research on cancer have focussed on specific cancers and have been hospital-based with no reference population. The Kumasi Cancer Registry was established as the first population-based cancer registry in Ghana in 2012 to provide information on cancer cases seen in the city of Kumasi. Methods This paper reviews data from the Kumasi Cancer Registry for the year 2012. The reference geographic area for the registry is the city of Kumasi as designated by the 2010 Ghana Population and Housing Census. Data was from all clinical departments of the Komfo Anokye Teaching Hospital, Pathology Laboratory Results, Death Certificates and the Kumasi South Regional Hospital. Data was abstracted and entered into Canreg 5 database. Analysis was conducted using Canreg 5, Microsoft Excel and Epi Info Version 7.1.2.0. Results The majority of cancers were recorded among females accounting for 69.6% of all cases. The mean age at diagnosis for all cases was 51.6 years. Among males, the mean age at diagnosis was 48.4 compared with 53.0 years for females. The commonest cancers among males were cancers of the Liver (21.1%), Prostate (13.2%), Lung (5.3%) and Stomach (5.3%). Among females, the commonest cancers were cancers of the Breast (33.9%), Cervix (29.4%), Ovary (11.3%) and Endometrium (4.5%). Histology of the primary tumour was the basis of diagnosis in 74% of cases with clinical and other investigations accounting for 17% and 9% respectively. The estimated cancer incidence Age Adjusted Standardised Rate for males was 10.9/100,000 and 22.4/100, 000 for females. Conclusion This first attempt at population-based cancer

  12. Metadata registry and management system based on ISO 11179 for cancer clinical trials information system

    PubMed Central

    Park, Yu Rang; Kim*, Ju Han

    2006-01-01

    Standardized management of data elements (DEs) for Case Report Form (CRF) is crucial in Clinical Trials Information System (CTIS). Traditional CTISs utilize organization-specific definitions and storage methods for Des and CRFs. We developed metadata-based DE management system for clinical trials, Clinical and Histopathological Metadata Registry (CHMR), using international standard for metadata registry (ISO 11179) for the management of cancer clinical trials information. CHMR was evaluated in cancer clinical trials with 1625 DEs extracted from the College of American Pathologists Cancer Protocols for 20 major cancers. PMID:17238675

  13. Ulcer healing time and antibiotic treatment before and after the introduction of the Registry of Ulcer Treatment: an improvement project in a national quality registry in Sweden

    PubMed Central

    Öien, Rut F; Forssell, Henrik W

    2013-01-01

    Objectives To investigate changes in ulcer healing time and antibiotic treatment in Sweden following the introduction of the Registry of Ulcer Treatment (RUT), a national quality registry, in 2009. Design A statistical analysis of RUT data concerning the healing time and antibiotic treatment for patients with hard-to-heal ulcers in Sweden between 2009 and 2012. Setting RUT is a national web-based quality registry used to capture areas of improvement in ulcer care and to structure wound management by registering patients with hard-to-heal leg, foot and pressure ulcers. Registration includes variables such as gender, age, diagnosis, healing time, antibiotic treatment, and ulcer duration and size. Population Every patient with a hard-to-heal ulcer registered with RUT between 2009 and 2012 (n=1417) was included. Main outcome measures Statistical analyses were performed using Stata V.12.1. Healing time was assessed with the Kaplan-Meier analysis and adjustment was made for ulcer size. A log-rank test was used for equality of survivor functions. Results According to the adjusted registry in December 2012, patients’ median age was 80 years (mean 77.5 years, range 11–103 years). The median healing time for all ulcers, adjusted for ulcer size, was 146 days (21 weeks) in 2009 and 63 days (9 weeks) in 2012 (p=0.001). Considering all years between 2009 and 2012, antibiotic treatment for patients with hard-to-heal ulcers was reduced from 71% before registration to 29% after registration of ulcer healing (p=0.001). Conclusions Healing time and antibiotic treatment decreased significantly during 3 years after launch of RUT. PMID:23959752

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

    PubMed

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

    2014-12-01

    Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future. PMID:24865858

  15. 33 CFR 187.313 - Must a State honor a prior State title, Coast Guard documentation, and foreign registry?

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... title, Coast Guard documentation, and foreign registry? 187.313 Section 187.313 Navigation and Navigable Waters COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) BOATING SAFETY VESSEL IDENTIFICATION..., Coast Guard documentation, and foreign registry? (a) A State must honor a title issued by another...

  16. 33 CFR 187.313 - Must a State honor a prior State title, Coast Guard documentation, and foreign registry?

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... title, Coast Guard documentation, and foreign registry? 187.313 Section 187.313 Navigation and Navigable Waters COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) BOATING SAFETY VESSEL IDENTIFICATION..., Coast Guard documentation, and foreign registry? (a) A State must honor a title issued by another...

  17. 33 CFR 187.313 - Must a State honor a prior State title, Coast Guard documentation, and foreign registry?

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... title, Coast Guard documentation, and foreign registry? 187.313 Section 187.313 Navigation and Navigable Waters COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) BOATING SAFETY VESSEL IDENTIFICATION..., Coast Guard documentation, and foreign registry? (a) A State must honor a title issued by another...

  18. 33 CFR 187.313 - Must a State honor a prior State title, Coast Guard documentation, and foreign registry?

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... title, Coast Guard documentation, and foreign registry? 187.313 Section 187.313 Navigation and Navigable Waters COAST GUARD, DEPARTMENT OF HOMELAND SECURITY (CONTINUED) BOATING SAFETY VESSEL IDENTIFICATION..., Coast Guard documentation, and foreign registry? (a) A State must honor a title issued by another...

  19. 46 CFR 221.15 - Approval for transfer of registry or operation under authority of a foreign country or for...

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... authority of a foreign country or for scrapping in a foreign country. 221.15 Section 221.15 Shipping... Noncitizens or to Registry or Operation Under Authority of a Foreign Country § 221.15 Approval for transfer of registry or operation under authority of a foreign country or for scrapping in a foreign country. In...

  20. 46 CFR 221.15 - Approval for transfer of registry or operation under authority of a foreign country or for...

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... authority of a foreign country or for scrapping in a foreign country. 221.15 Section 221.15 Shipping... Noncitizens or to Registry or Operation Under Authority of a Foreign Country § 221.15 Approval for transfer of registry or operation under authority of a foreign country or for scrapping in a foreign country. In...

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

    ERIC Educational Resources Information Center

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

    2012-01-01

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

  2. 49 CFR 390.111 - Requirements for continued listing on the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 5 2013-10-01 2013-10-01 false Requirements for continued listing on the National Registry of Certified Medical Examiners. 390.111 Section 390.111 Transportation Other Regulations Relating... National Registry of Certified Medical Examiners § 390.111 Requirements for continued listing on...

  3. Promoting the Michigan organ donor registry: evaluating the impact of a multifaceted intervention utilizing media priming and communication design.

    PubMed

    Harrison, Tyler R; Morgan, Susan E; King, Andy J; Di Corcia, Mark J; Williams, Elizabeth A; Ivic, Rebecca K; Hopeck, Paula

    2010-12-01

    There are currently more than 100,000 individuals waiting for an organ transplant. Organ donor registries represent the easiest and most concrete way for people to declare their intent to donate, but organ donor registries are vastly underutilized. This study reports a campaign intervention designed to increase the rate of joining the Michigan Organ Donor Registry. Grounding intervention development in the theoretical principles of media priming and communication design, the intervention took place in two waves in three counties in Michigan. Each intervention consisted of a media component, point-of-decision materials, and an interpersonal component. Increases in registration rates of 200 to 300% in each intervention county, compared to stable statewide trends in registry rates, provide evidence of highly successful intervention efforts. The rate of registry increase in intervention counties was approximately 1,900% higher than statewide on a per capita basis. PMID:21153986

  4. Challenges in identifying Native Hawaiians and Pacific Islanders in population-based cancer registries in the U.S.

    PubMed

    Liu, Lihua; Tanjasiri, Sora Park; Cockburn, Myles

    2011-10-01

    Lack of disaggregated data for Native Hawaiians and Pacific Islanders (NHPIs) in the U.S. has resulted in severe gaps in understanding health disparities and unique health needs of NHPIs. Telephone interviews were conducted with 272 cancer patients identified by a population-based cancer registry. The self-reported NHPIs status was compared with that identified by the registry. Sensitivity, Specificity, Positive Predictive Value (PPV), and Negative Predictive Value (NPV) were calculated. Alternative NHPIs identification methods were explored. The registry had acceptable sensitivity (89%), specificity (96%) and NPV (99%), but low PPV (62%) in identifying NHPIs. Using additional information on surname and birthplace from the registry improved the identification of NHPIs, but either increased the false positive or decreased the counts of true NHPIs cases. Improved data collection methods and practices in identifying NHPIs in population-based cancer registries are needed and caution in interpreting cancer data for NHPIs is warranted. PMID:20803254

  5. 78 FR 66042 - 30-Day Notice of Proposed Information Collection: Section 3 Business Registry Pilot Program...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-11-04

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HOUSING AND URBAN DEVELOPMENT 30-Day Notice of Proposed Information Collection: Section 3 Business Registry Pilot..., Reports Management Officer, QDAM, Department of Housing and Urban Development, 451 7th Street...

  6. Overview of existing networks--is there a rationale for an Asian Cancer Registry Network?

    PubMed

    Moore, Malcolm A; Tajima, Kazuo

    2006-01-01

    Cancer registration is the base for our understanding of the burden of neoplastic disease in our populations at the local level. Comparability of data is essential for interpretation and this in turn depends on standardization of methodology and diagnostic and other criteria applied. If this is to be achieved across Asia, some form of international organization is clearly necessary. The question therefore should be whether the existing arrangement is adequate, and if this is not the case how a network in Asia might be established with due consideration of aims and attainable objectives. The present commentary focuses on the contributions made by the International Agency for Research on Cancer (IARC), the International Association of Cancer Registries (IACR), the European Network of Cancer Registries (ENCR), the North American Association of Central Cancer Registries (NAACCR) and individual country-based or region-based associations already active in Asia. An argument is presented here that there is a rationale for an Asian Network of Cancer Registries, working alongside and learning from the existing international organizations to promote effective cancer registration and disease prevention in Asia. PMID:16629537

  7. 75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-05-25

    ... 2007'' and gave interested parties an opportunity to submit comments by July 27, 2009 (74 FR 27803... FR 46434). This draft guidance is the second edition of that guidance entitled ``Questions and... Registry is to provide a ``reliable mechanism to track patterns of adulteration in food would...

  8. 78 FR 52208 - 60-Day Notice of Proposed Information Collection Section 3 Business Registry Surveys

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-22

    ... URBAN DEVELOPMENT 60-Day Notice of Proposed Information Collection Section 3 Business Registry Surveys..., Department of Housing and Urban Development, 451 7th Street SW., Room 4176, Washington, DC 20410-5000... Housing and Equal Opportunity, Department of Housing and Urban Development, 451 7th Street SW., Room...

  9. GEOSS Registry System: Enabling the Registering and Discovering of Geospatial Web Services Worldwide

    NASA Astrophysics Data System (ADS)

    Bai, Y.; di, L.; Nebert, D.; Wei, Y.

    2007-12-01

    Web Service registry, as a key infrastructural component and cornerstone for Service-Oriented-Architecture deployments, meets the critical need to register, discover, and govern available Web services that provide a promising plan to promote the online discovering and sharing of massive valuable geospatial data. The Global Earth Observation System of Systems (GEOSS) Registry System includes mechanisms to register components and have them approved by the GEO Secretariat, to register services and associate them with GEOSS-recognized standards -- and special arrangements for implementations using non-recognized approaches. A taxonomy of standard types is also proposed to assist in the discovery and classification of GEOSS service implementations. This GEOSS registry exposes Universal Description, Discovery and Integration (UDDI), OASIS ebXML-ebRS, and OpenGIS Consortium (OGC) Catalogue Service for Web (CSW) interfaces to be accessed by other applications, including GEOSS Web Portal solutions. Clearinghouse implementations can use the GEOSS registry to register and locate GEOSS catalog services as a basis for evaluation, configuration, harvest, and distributed query. The details of the system design and implementation will be presented, along with the lessons learned from this effort to promote the discovery and system integration of geospatial Web Services worldwide.

  10. 76 FR 36896 - Notice of Establishment of a New Plant Protection and Quarantine Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-23

    ... email subscription service and advises current subscribers on how to continue receiving emails on topics... to receive information about PPQ activities on a variety of plant health topics. PPQ has redesigned... Stakeholder Registry in order to continue receiving emails on PPQ-related topics. Subscribers will be able...

  11. [Romanian national registry for interstitial lung diseases and sarcoidosis (REGIS): rationale and methods].

    PubMed

    Strâmbu, Irina; Ioniţă, Diana; Belaconi, Ionela; Stoia, Irina; Tudorache, Voicu

    2012-01-01

    Interstitial lung diseases (ILD) are a group of extremely heterogeneous conditions (over 200), with low prevalence, but in most cases with severe impact on the quality of life and survival of the patients. The ILD group comprises: idiopathic pulmonary fibrosis, sarcoidosis, hypersensitivity pneumonitis, colagen diseases, vasculitis, eosinophilic pneumonia etc. The prevalence of these diseases is unknown in Romania; the accurate diagnosis needs access to special investigations and expertise with this group of diseases. The authors propose the initiation of a National Registry for Interstitial Lung Diseases and Sarcoidosis (REGIS), based on the lessons learned from other national ILD) registries, which should allow building-up an extended clinical expertise in ILD, evaluating epidemiological data, creating an educational platform for young physicians, better understanding of the outcome and prognosis of these diseases, shaping Romanian Guidelines for the diagnosis and management of ILD, using the data base for clinical research. The registry is started as a pilot in two Romanian centres: "Marius Nasta" Institute of Pneumology in Bucharest and Pneumology Clinic, "Victor Babey" Infectious Diseases Hospital Timişoara. After refining the inclusion criteria for the data base, editing guidelines for ILD diagnosis and launching the registry website, other Romanian centres with interest in ILD will also be able to feed information. PMID:22545484

  12. Toxic Substances Registry System: Index of Material Safety Data Sheets. Revised

    NASA Technical Reports Server (NTRS)

    1998-01-01

    The January 1998 revision of the Index of Materials Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

  13. The Organization and Evaluation of a Computer-Assisted, Centralized Immunization Registry.

    ERIC Educational Resources Information Center

    Loeser, Helen; And Others

    1983-01-01

    Evaluation of a computer-assisted, centralized immunization registry after one year shows that 93 percent of eligible health practitioners initially agreed to provide data and that 73 percent continue to do so. Immunization rates in audited groups have improved significantly. (GC)

  14. Nonspecific Mental Retardation in British Columbia as Ascertained through a Registry.

    ERIC Educational Resources Information Center

    Herbst, Diana S.; Baird, Patricia A.

    1983-01-01

    Findings from the British Columbia Health Surveillance Registry revealed information about the age specific prevalence of mental retardation with no known etiology; association of mild and profound retardation with microcephalus, hydrocephalus, cerebral palsy, or epilepsy; and survival rates. (Author/CL)

  15. Assessing the Utility of Automatic Cancer Registry Notifications Data Extraction from Free-Text Pathology Reports

    PubMed Central

    Nguyen, Anthony N.; Moore, Julie; O’Dwyer, John; Philpot, Shoni

    2015-01-01

    Cancer Registries record cancer data by reading and interpreting pathology cancer specimen reports. For some Registries this can be a manual process, which is labour and time intensive and subject to errors. A system for automatic extraction of cancer data from HL7 electronic free-text pathology reports has been proposed to improve the workflow efficiency of the Cancer Registry. The system is currently processing an incoming trickle feed of HL7 electronic pathology reports from across the state of Queensland in Australia to produce an electronic cancer notification. Natural language processing and symbolic reasoning using SNOMED CT were adopted in the system; Queensland Cancer Registry business rules were also incorporated. A set of 220 unseen pathology reports selected from patients with a range of cancers was used to evaluate the performance of the system. The system achieved overall recall of 0.78, precision of 0.83 and F-measure of 0.80 over seven categories, namely, basis of diagnosis (3 classes), primary site (66 classes), laterality (5 classes), histological type (94 classes), histological grade (7 classes), metastasis site (19 classes) and metastatic status (2 classes). These results are encouraging given the large cross-section of cancers. The system allows for the provision of clinical coding support as well as indicative statistics on the current state of cancer, which is not otherwise available. PMID:26958232

  16. Towards Networked Knowledge: The Learning Registry, an Infrastructure for Sharing Online Learning Resources

    ERIC Educational Resources Information Center

    Lee, Ashley; Hobson, Joe; Bienkowski, Marie; Midgley, Steve; Currier, Sarah; Campbell, Lorna M.; Novoselova, Tatiana

    2012-01-01

    In this article, the authors describe an open-source, open-data digital infrastructure for sharing information about open educational resources (OERs) across disparate systems and platforms. The Learning Registry, which began as a project funded by the U.S. Departments of Education and Defense, currently has an active international community…

  17. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 3 2012-10-01 2012-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  18. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 3 2014-10-01 2014-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  19. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 3 2013-10-01 2013-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  20. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 3 2014-10-01 2014-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  1. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 3 2012-10-01 2012-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  2. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 3 2013-10-01 2013-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  3. Toxic Substances Registry System: Index of Material Safety Data Sheets. Volume 1; Manufacturer

    NASA Technical Reports Server (NTRS)

    1998-01-01

    The April 1998 revision of the Index of Materials Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on hazards, use, and chemical composition of materials stored at KSC.

  4. [Performance of record linkage for cancer registry data linked with mammography screening data].

    PubMed

    Giersiepen, K; Bachteler, T; Gramlich, T; Reiher, J; Schubert, B; Novopashenny, I; Schnell, R

    2010-07-01

    The evaluation of the German Mammography Screening Program requires record linkage with data from cancer registries in order to measure the number of false-negative mammograms and interval cancers. This study aims at evaluating the performance of the established linkage method based on identifiers encrypted by the standard procedure of the German cancer registries. In addition, the results are compared with an alternative method based on plain text identifiers. A total of 16,572 records from the Bremen Mammography Screening Pilot Study were linked with data from the Bremen Cancer Registry. Based on a gold standard set of matching record pairs, homonym and synonym errors were determined. Given the customary threshold value in cancer registries, the plain text method showed a lower rate of synonym errors (2.1-5.1%) and a lower rate of homonym errors (0.01-0.15%). As 10.4 million women are invited to take part biennially in screening, the corresponding figures would be 3,237 homonym errors for the standard procedure and 294 using the plain text method provided equivalent conditions. The 11-fold increase in the homonym error rate documents the trade-off for better data protection using encrypted data. PMID:20652484

  5. Posttraumatic Stress Disorder and Late-Onset Smoking in the Vietnam Era Twin Registry

    ERIC Educational Resources Information Center

    Koenen, Karestan C.; Hitsman, Brian; Lyons, Michael J.; Stroud, Laura; Niaura, Raymond; McCaffery, Jeanne; Goldberg, Jack; Eisen, Seth A.; True, William; Tsuang, Ming

    2006-01-01

    Epidemiological and clinical studies have consistently reported associations between smoking and posttraumatic stress disorder (PTSD). This study analyzed diagnostic interview data on 6,744 members of the Vietnam Era Twin Registry to clarify the PTSD-smoking relation and to examine whether genetic liability for smoking moderated this relation.…

  6. 77 FR 52745 - Leveraging Registries With Medical Device Data for Postmarket Surveillance and Evidence Appraisal...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-30

    ... iterative nature of product development, the learning curve associated with technology adoption, and the... intensity. CDRH believes that registry development in targeted product areas will both provide needed... Postmarket Surveillance and Evidence Appraisal Throughout the Total Product Life Cycle AGENCY: Food and...

  7. Self Instructional Manual for Tumor Registrars: Book 1, Objectives and Functions of a Tumor Registry.

    ERIC Educational Resources Information Center

    National Cancer Inst. (NIH), Bethesda, MD.

    The programed text is designed to provide tumor registrars with a means of learning the procedures for abstracting charts of cancer patients and for carrying out the other functions of a tumor registry. It was developed as an adjunct to on-the-job training for use without direct instructor supervision. Directions and suggestions for using the…

  8. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 49 Transportation 3 2011-10-01 2011-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  9. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 49 Transportation 3 2011-10-01 2011-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

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

    PubMed

    Michels, D K; Zamieroski, M

    1990-12-01

    In summary, having data from other service areas available in a relational clinical database could resolve many of the problems existing in today's registry systems. Uniting sophisticated information systems into a centralized database system could definitely be a corporate asset in managing the bottom line. PMID:10108501

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

    PubMed

    Sinaci, A Anil; Laleci Erturkmen, Gokce B

    2013-10-01

    In order to enable secondary use of Electronic Health Records (EHRs) by bridging the interoperability gap between clinical care and research domains, in this paper, a unified methodology and the supporting framework is introduced which brings together the power of metadata registries (MDR) and semantic web technologies. We introduce a federated semantic metadata registry framework by extending the ISO/IEC 11179 standard, and enable integration of data element registries through Linked Open Data (LOD) principles where each Common Data Element (CDE) can be uniquely referenced, queried and processed to enable the syntactic and semantic interoperability. Each CDE and their components are maintained as LOD resources enabling semantic links with other CDEs, terminology systems and with implementation dependent content models; hence facilitating semantic search, much effective reuse and semantic interoperability across different application domains. There are several important efforts addressing the semantic interoperability in healthcare domain such as IHE DEX profile proposal, CDISC SHARE and CDISC2RDF. Our architecture complements these by providing a framework to interlink existing data element registries and repositories for multiplying their potential for semantic interoperability to a greater extent. Open source implementation of the federated semantic MDR framework presented in this paper is the core of the semantic interoperability layer of the SALUS project which enables the execution of the post marketing safety analysis studies on top of existing EHR systems. PMID:23751263

  12. Assessing the Utility of Automatic Cancer Registry Notifications Data Extraction from Free-Text Pathology Reports.

    PubMed

    Nguyen, Anthony N; Moore, Julie; O'Dwyer, John; Philpot, Shoni

    2015-01-01

    Cancer Registries record cancer data by reading and interpreting pathology cancer specimen reports. For some Registries this can be a manual process, which is labour and time intensive and subject to errors. A system for automatic extraction of cancer data from HL7 electronic free-text pathology reports has been proposed to improve the workflow efficiency of the Cancer Registry. The system is currently processing an incoming trickle feed of HL7 electronic pathology reports from across the state of Queensland in Australia to produce an electronic cancer notification. Natural language processing and symbolic reasoning using SNOMED CT were adopted in the system; Queensland Cancer Registry business rules were also incorporated. A set of 220 unseen pathology reports selected from patients with a range of cancers was used to evaluate the performance of the system. The system achieved overall recall of 0.78, precision of 0.83 and F-measure of 0.80 over seven categories, namely, basis of diagnosis (3 classes), primary site (66 classes), laterality (5 classes), histological type (94 classes), histological grade (7 classes), metastasis site (19 classes) and metastatic status (2 classes). These results are encouraging given the large cross-section of cancers. The system allows for the provision of clinical coding support as well as indicative statistics on the current state of cancer, which is not otherwise available. PMID:26958232

  13. 78 FR 17213 - Agency for Toxic Substances and Disease Registry Availability of Final Toxicological Profile

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-20

    ... of the 275 priority substances was announced in the Federal Register on November 3rd, 2011 (76 FR... published in the Federal Register on April 27, 2011 (76 FR 23600), with notice of a 90-day public comment... HUMAN SERVICES Agency for Toxic Substances and Disease Registry Availability of Final...

  14. Issues and trends in pediatric growth hormone therapy--an update from the GHMonitor observational registry.

    PubMed

    Pitukcheewanont, Pisit; Desrosiers, Paul; Steelman, Joel; Rapaport, Robert; Fuqua, John S; Kreher, Nerissa C; Hamlett, Anthony

    2008-02-01

    The GHMonitor observational registry collates data on pediatric subjects receiving Saizen (recombinant human growth hormone (GH)) therapy. From January 2003 through August 2006, 1335 subjects were enrolled in the registry, approximately two-thirds of whom are male. The most common diagnosis in the registry is idiopathic growth hormone deficiency (58%). Most subjects in GHMonitor are receiving Saizen doses using a needle-free delivery device, the cool.click (73%). Mean height standard deviation scores show an improvement from -2.1 at screening to -1.1 following 3 years of Saizen therapy. To date, adverse events have been reported in 4% of subjects. Three serious adverse events were identified to be related to Saizen by the primary investigator: cellulitis at the injection site, behavioral problems/suicidal ideation, and enlargement of a craniopharyngioma. This article provides an update on data from the registry and briefly discusses topical and controversial issues in the treatment of pediatric patients requiring GH therapy. PMID:18317441

  15. Toxic Substances Registry System: Index of Material Safety Data Sheets. Revised

    NASA Technical Reports Server (NTRS)

    1997-01-01

    The October 1997 revision of the Index of Material Safety Data Sheets (MSDS) for the Kennedy Space Center (KSC) Toxic Substances Registry System (TSRS) is presented. The MSDS lists toxic substances by manufacturer, trade name, stock number, and distributor. The index provides information on the hazards, use, and chemical composition of materials stored and used at KSC.

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

    PubMed

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

    2015-07-01

    The effective capture of outcome measures in the healthcare setting can be traced back to Florence Nightingale's investigation of the in-patient mortality of soldiers wounded in the Crimean war in the 1850s. Only relatively recently has the formalised collection of outcomes data into Registries been recognised as valuable in itself. With the advent of surgeon league tables and a move towards value based health care, individuals are being driven to collect, store and interpret data. Following the success of the National Joint Registry, the British Association of Spine Surgeons instituted the British Spine Registry. Since its launch in 2012, over 650 users representing the whole surgical team have registered and during this time, more than 27 000 patients have been entered onto the database. There has been significant publicity regarding the collection of outcome measures after surgery, including patient-reported scores. Over 12 000 forms have been directly entered by patients themselves, with many more entered by the surgical teams. Questions abound: who should have access to the data produced by the Registry and how should they use it? How should the results be reported and in what forum? PMID:26130338

  17. [Treatment of severely injured patients : Impact of the German Trauma Registry DGU®].

    PubMed

    Bouillon, B; Lefering, R; Paffrath, T; Sturm, J; Hoffmann, R

    2016-06-01

    The German Trauma Registry DGU® started in 1993 as an initiative of five dedicated trauma centers and has evolved significantly since then. Data were obtained at four points of time from the site of the accident until discharge from hospital. In the first year (1993), the registry collected data of 260 patients from 5 hospitals. In 2015 more than 38.000 were included from 640 hospitals.This paper focusses on the impact of the trauma registry on the treatment of severely injured patients. Several authors could show that the data can be used by hospitals for benchmarking. This can help to detect problems in individual hospitals and to find solutions that can be implemented into the process of care and its subsequent reevaluation. Due to structural and process-related changes, the time necessary for the management in the emergency room could be reduced significantly. Various scientific analyses of the Trauma Registry DGU® data were implemented in the treatment of severely injured patients. In the prehospital treatment, this changed the criteria for intubation and led to a reduction of volume replacement. In the hospital setting, the analysis influenced the radiologic work-up and the treatment of coagulopathy of severely injured patients. Moreover, the risk-adjusted mortality of severely injured patients in Germany could be continuously reduced over the past 20 years. PMID:27240850

  18. [Nationwide statements from regional data: methods of the Center for Cancer Registry Data].

    PubMed

    Kraywinkel, K; Barnes, B; Dahm, S; Haberland, J; Nennecke, A; Stabenow, R

    2014-01-01

    Despite having achieved nationwide registry coverage in addition to substantial improvements in data on the epidemiology of cancer in Germany, the Centre for Cancer Registry Data continues to estimate national statistics on incidence, survival, and prevalence instead of calculating these directly from available data. The methods used for evaluations are based initially on estimates of registration completeness or, for survival analyses, an assessment of the quality of follow-up data. The completeness of incident case registration is estimated on the basis of the mortality/incidence procedure, which assumes a largely constant relationship between the mortality and incidence of a cancer type among people of the same age and sex across federal states. Inclusion criteria for consideration of registry data in national survival analyses are less than 15% of death certificate only (DCO) cases and plausible survival for patients with pancreatic cancer or metastatic lung cancer. Of the 477,300 incident cancer cases estimated for 2010, 429,900 were reported by the cancer registries (90%), and ten federal states contributed data to national survival estimates. PMID:24357167

  19. University of Washington Twin Registry: Poised for the Next Generation of Twin Research

    PubMed Central

    Strachan, Eric; Hunt, Corinne; Afari, Niloofar; Duncan, Glen; Noonan, Carolyn; Schur, Ellen; Watson, Nathaniel; Goldberg, Jack; Buchwald, Dedra

    2015-01-01

    The University of Washington Twin Registry is a unique community-based registry of twin pairs who join specifically to participate in scientific research. It was founded in 2002 to serve as a resource for investigators throughout the scientific community. Current enrollment exceeds 7,200 pairs, and plans are in place to increase enrollment to 10,000 pairs by 2015. In addition to serving as a recruitment base for new research studies, the registry maintains extensive and continually expanding survey data on physical and mental health, as well as a biorepository that includes DNA from more than 8,800 individual twins. The registry is engaged in linking member data to birth records and to diagnostic and procedure variables for hospital-based care provided to members in Washington State. It also incorporates several innovative variables relevant to the built and social environments, which were created by geocoding twin addresses and linking the resulting coordinates to geospatial information systems databases. This combination of existing data and biospecimens, characterizing a group of twins who are willing to participate in research, is a valuable resource for the new wave of twin studies. These include ‘omics’, epigenetics, gene-by-environment interactions, and other novel methods to understand human health. PMID:23218177

  20. Evidence Clearinghouses and Registries: Methods for Locating and Including Studies in Evidence Syntheses

    ERIC Educational Resources Information Center

    Foster, Lisa; LaSota, Robin; Yeide, Martha

    2015-01-01

    The purpose of this investigation is to report about study identification practices across evidence-based registries and clearinghouses in social policy fields, which serve as a resource for scientific, evidence-based decision-making about practices about desired outcomes in these social policy fields. The information retrieval procedures of the…

  1. 27 CFR 29.55 - Registry of stills and distilling apparatus.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... distilling apparatus. 29.55 Section 29.55 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND... Registry of stills and distilling apparatus. (a) General. Every person having possession, custody, or control of any still or distilling apparatus set up shall, immediately on its being set up, register...

  2. 27 CFR 29.55 - Registry of stills and distilling apparatus.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... distilling apparatus. 29.55 Section 29.55 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND... Registry of stills and distilling apparatus. (a) General. Every person having possession, custody, or control of any still or distilling apparatus set up shall, immediately on its being set up, register...

  3. Equating Computerized Adaptive Certification Examinations: The Board of Registry Series of Studies.

    ERIC Educational Resources Information Center

    Lunz, Mary E.; Bergstrom, Betty A.

    The Board of Registry (BOR) certifies medical technologists and other laboratory personnel. The BOR has studied adaptive testing for over 6 years and now administers all 17 BOR certification examinations using computerized adaptive testing (CAT). This paper presents an overview of the major research efforts from 1989 to the present related to test…

  4. National joint registry data underestimates the burden of prosthetic joint infection

    PubMed Central

    Young, Simon; Zhu, Mark; Ravi, Saiprasad; Luey, Chris

    2016-01-01

    Objective: Joint registries are powerful tools for tracking outcomes following joint arthroplasty. However recent literature has exposed deficiencies in data accuracy when reporting re-operations for prosthetic joint infections (PJI), particularly when no components are changed. The aim of this study was to compare accuracy of data from the New Zealand Joint Registry (NZJR) to a multi-centre audit of hospital records to establish the rate of capture for PJI reoperations. Methods: We followed 4009 patients undergoing total knee or hip arthroplasty performed at the three tertiary referral hospitals from January 2006 to December 2008 for two years. The reoperation rate for PJIs was extracted from the NZJR. In addition, an audit of hospital records for the same patients was carried out to identify reoperations for PJI. The audit data was then compared to the NZJR data. Results: The NZJR reported a reoperation rate of 0.67% for PJI within two years of the primary arthroplasty compared to 1.1% from the audit of hospital records, giving the NZJR a sensitivity of 63%. Only 36% of washout only procedures and 58% of modular exchange procedures were captured. Surgeons were more likely to report PJIs to NZJR if they performed the primary procedure. Conclusion: National joint registry data significantly underestimates the rate of reoperation for PJI. Strategies for improving data accuracy may include revising the registry forms to include reoperation without change of components and frequent validation of national data with other databases.

  5. Registry of Communication Research: An Identification of Selected Communication Research Projects in the Academic Community.

    ERIC Educational Resources Information Center

    Smith, Elbert J., Ed.

    This Registry is designed to be a single-source reference to aid in determining the kinds of communication research in process, where it is being conducted, and by whom. The projects are categorized by one or more primary areas of communication and then as to the most applicable basic form of communication. Basic areas of communication research…

  6. Enabling Interoperability - Supporting a Diversity of Search Paradigms Using Shared Ontologies and Federated Registries

    NASA Astrophysics Data System (ADS)

    Hughes, J. S.; Crichton, D. J.; Hardman, S. H.; Mattman, C. A.; Ramirez, P. M.

    2009-12-01

    Experience suggests that no single search paradigm will meet all of a community’s search requirements. Traditional forms based search is still considered critical by a significant percentage of most science communities. However text base and facet based search are improving the community’s perception that search can be easy and that the data is available and can be located. Finally semantic search promises ways to find data that were not conceived when the metadata was first captured and organized. This situation suggests that successful science information systems must be able to deploy new search applications quickly, efficiently, and often for ad-hoc purposes. Federated registries allow data to be packaged or associated with their metadata and managed as simple registry objects. Standard reference models for federated registries now exist that ensure registry objects are uniquely identified at registration and that versioning, classification, and cataloging are addressed automatically. Distributed but locally governed, federated registries also provide notification of registry events and federated query, linking, and replication of registry objects. Key principles for shared ontology development in the space sciences are that the ontology remains independent of its implementation and be extensible, flexible and scalable. The dichotomy between digital things and physical/conceptual things in the domain need to be unified under a standard model, such as the Open Archive Information System (OAIS) Information Object. Finally the fact must be accepted that ontology development is a difficult task that requires time, patience and experts in both the science domain and information modeling. The Planetary Data System (PDS) has adopted this architecture for it next generation information system, PDS 2010. The authors will report on progress, briefly describe key elements, and illustrate how the new system will be phased into operations to handle both legacy and new

  7. United Kingdom Carotid Artery Stent Registry: Short- and Long-Term Outcomes

    SciTech Connect

    Goode, S. D. Cleveland, T. J.; Gaines, P. A.

    2013-10-15

    Background: Carotid artery stenting (CAS) has evolved to treat carotid artery disease with the intention of prevent stroke. The British Society of Interventional Radiologists developed a voluntary registry to monitor the practice of this novel procedure. We present the data from the United Kingdom (UK) CAS registry for short and long-term outcomes for symptomatic and asymptomatic carotid disease. Methods: The UK CAS registry collected data from 1998 to 2010 from 31 hospitals across the UK for 1,154 patients. All interventions were enrolled in the registry for both asymptomatic and symptomatic patients. Initial entry forms were completed for each patient entered with data including indications, demographic data, CAS data (including stents and protection device details) and 30-day outcomes. Complications were documented. Follow-up data were collected at yearly intervals. Results: Nine hundred fifty-three (83 %) symptomatic and 201 (17 %) asymptomatic patients were enrolled into the registry. The 30-day all stroke and death rates for symptomatic patients were 5.5 and 2.2 % for those with asymptomatic disease. The 30-day mortality rate was 1.7 % for symptomatic and 0.6 % for asymptomatic patients. For symptomatic patients undergoing CAS, the 7-year all-cause mortality rate was 22.2 % and for asymptomatic patients 18.1 %. The 7-year all-cause mortality and disabling stroke rates were 25.3 and 19.4 %, respectively. Conclusion: These data indicate that outside of the tight constraints of a randomised trial, CAS provides effective prophylaxis against stroke and death.

  8. Childhood diabetes in the Nordic countries: a comparison of quality registries.

    PubMed

    Hanberger, Lena; Birkebaek, Niels; Bjarnason, Ragnar; Drivvoll, Ann Kristin; Johansen, Anders; Skrivarhaug, Torild; Thorsson, Arni V; Samuelsson, Ulf

    2014-07-01

    In 2008 a Nordic collaboration was established between the quality registries in Denmark, Iceland, Norway, and Sweden to improve quality of care for children with diabetes. This study aimed to describe those registries and confirm that the registry variables are comparable. Selected variables were used to demonstrate outcome measurements. The organization of the registries and methodology are described. Cross-sectional data for patients between birth and 14.9 years with type 1 diabetes mellitus in 2009 (n = 6523) from 89 centers were analyzed. Variables were age, gender, and diabetic ketoacidosis at onset, together with age, gender, HbA1c, insulin regimen, and severe hypoglycemia at follow-up in 2009. All 4 registries use a standardized registration at the onset of diabetes and at follow-up, conducted at the local pediatric diabetes centers. Methods for measuring HbA1c varied as did methods of registration for factors such as hypoglycemia. No differences were found between the outcomes of the clinical variables at onset. Significant variations were found at follow-up for mean HbA1c, the proportion of children with HbA1c < 57 mmol/mol (NGSP/DCCT 7.4%), (range 15-31%), the proportion with insulin pumps (range 34-55%), and the numbers with severe hypoglycemia (range 5.6-8.3/100 patient years). In this large unselected population from 4 Nordic countries, a high proportion did not reach their treatment target, indicating a need to improve the quality of pediatric diabetes care. International collaboration is needed to develop and harmonize quality indicators and offers possibilities to study large geographic populations, identify problems, and share knowledge. PMID:24876421

  9. Leveraging Industry-Standard Metadata to Populate a Semantic Registry Suitable for the Model Web

    NASA Astrophysics Data System (ADS)

    Del Rio, N.; Pennington, D. D.; Benedict, K. K.; Villanueva-Rosales, N.; Hudspeth, W. B.; Scott, S.; Stewart, A. M.; Grady, C.

    2013-12-01

    The Earth, Life, and Semantic Web (ELSEWeb) project aims at developing a semantically enabled service-oriented infrastructure that streamlines the flow of geographic, social, and climate data into and across sets of modeling services. The specific models targeted in ELSEWeb serve as part of the University of Kansas' Lifemapper system, which projects species' distributions under different models of climate change. Lifemapper models ingest stacks of geospatial data known as 'scenario layer sets,' which provide information about existing or hypothetical environments from which to predict where species may thrive. Prior to Lifemapper ingestion, users must discover and transform relevant data that will comprise layer sets, requiring analysis of metadata descriptions across a plethora of standards. The ELSEWeb infrastructure aims at alleviating manual discovery by introducing a semantic metadata registry from which semantic web tools can leverage, including the SADI orchestration framework (Wilkinson 2011), which coordinates transformations of input geospatial data into scenario layer sets and exposes the results for potential further analysis. Populating the semantic registry required translating a family of industry-standard metadata descriptions including: OGC getCapabilities, FGDC, and CF standard names into the semantic registry model. This work reports on the construction and characteristics of our semantic registry, which currently describes over 6500 services providing a wide variety of environmental data. Additionally, we report on the SADI services that leverage the registry to (1) identify relevant environment data (2) aggregate data into layer sets, and (3) reshape data to fit Lifemapper requirements. Given this automation, users can explore a vast model space more easily--a principal central to the Model Web (Geller and Melton 2008). ELSEWeb Data Flow Lifemapper Model Result

  10. Insights from the early experience of the Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry.

    PubMed

    Rumsfeld, John S; Holmes, David R; Stough, Wendy Gattis; Edwards, Fred H; Jacques, Louis B; Mack, Michael J

    2015-03-01

    The current system for postmarket surveillance of medical devices in the United States is limited. To help change this paradigm for transcatheter valve therapies (TVTs), starting with transcatheter aortic valve replacement, the Society of Thoracic Surgeons and the American College of Cardiology partnered to form the TVT Registry program in close collaboration with the U.S. Food and Drug Administration and the Center for Medicare and Medicaid Services. The goal of the TVT Registry is to measure and improve quality of care and patient outcomes in clinical practice and to have a pivotal role in the scientific evidence and surveillance for medical devices. Challenges were faced in the early experience of the registry included developing multistakeholder partnerships, data collection requirements, and the use of the registry for pre- and post-market device evaluations. In addressing these challenges, the TVT Registry demonstrates that it is feasible for professional societies to assume a pivotal role in pre- and/or post-market studies, leveraging a clinical registry infrastructure. Sharing the TVT Registry experience may help other professional societies and stakeholders better anticipate and plan for these challenges. PMID:25703888

  11. A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

    PubMed Central

    2014-01-01

    Background Although rare diseases have become a major public health issue, there is a paucity of population-based data on rare diseases. The aim of this epidemiological study was to provide descriptive figures referring to a sizable group of unrelated rare diseases. Methods Data from the rare diseases registry established in the Veneto Region of north-east Italy (population 4,900,000), referring to the years from 2002 to 2012, were analyzed. The registry is based on a web-based system accessed by different users. Cases are enrolled by two different sources: clinicians working at Centers of expertise officially designated to diagnose and care patients with rare diseases and health professionals working in the local health districts. Deaths of patients are monitored by Death Registry. Results So far, 19,547 patients with rare diseases have been registered, and 23% of them are pediatric cases. The overall raw prevalence of the rare diseases monitored in the population under study is 33.09 per 10,000 inhabitants (95% CI 32.56-33.62), whilst the overall incidence is 3.85 per 10,000 inhabitants (95% CI 3.67-4.03). The most commonly-recorded diagnoses belong to the following nosological groups: congenital malformations (Prevalence: 5.45/10,000), hematological diseases (4.83/10,000), ocular disorders (4.47/10,000), diseases of the nervous system (3.51/10,000), and metabolic disorders (2,95/10,000). Most of the deaths in the study population occur among pediatric patients with congenital malformations, and among adult cases with neurological diseases. Rare diseases of the central nervous system carry the highest fatality rate (71.36/1,000). Rare diseases explain 4.2% of general population Years of Life Lost (YLLs), comparing to 1.2% attributable to infectious diseases and 2.6% to diabetes mellitus. Conclusions Our estimates of the burden of rare diseases at population level confirm that these conditions are a relevant public health issue. Our snapshot of their epidemiology

  12. Establishment of a Maternal Newborn Health Registry in the Belgaum District of Karnataka, India

    PubMed Central

    2015-01-01

    Background Pregnancy-related vital registration is important to inform policy to reduce maternal, fetal and newborn mortality, yet few systems for capturing accurate data are available in low-middle income countries where the majority of the mortality occurs. Furthermore, methods to effectively implement high-quality registration systems have not been described. The goal of creating the registry described in this paper was to inform public health policy makers about pregnancy outcomes in our district so that appropriate interventions to improve these outcomes could be undertaken and to position the district to be a leader in pregnancy-related public health research. Methods We created a prospective maternal and newborn health registry in Belgaum, Karnataka State, India. To initiate this registry, we worked with the Ministry of Health to first establish estimated birth rates and define the catchment areas of the clusters, working within the existing health system and primary health centers. We also undertook household surveys to identify women likely to become pregnant. We then implemented monitoring measures to ensure high quality and completeness of the maternal newborn health registry. All pregnant women in the catchment area were identified, consented and enrolled during pregnancy, with follow-up visits to ascertain pregnancy outcomes and mother/infant status at 42-days postpartum. Results From 2008 through 2014, we demonstrated continued improvements in both the coverage for enrollment and accuracy of reporting pregnancy outcomes within the defined catchment area in Belgaum, India. Nearly 100% of women enrolled had follow-up at birth and 99% had 42-day follow-up. Furthermore, we facilitated earlier enrollment of women during pregnancy while achieving more timely follow-up and decreased time of reporting from the date of the pregnancy event. Conclusions We created a pregnancy-related registry which includes demographic data, risk factors, and outcomes allowing

  13. A global patient outcomes registry: Cochlear paediatric implanted recipient observational study (Cochlear™ P-IROS)

    PubMed Central

    2014-01-01

    Background Currently, there is a paucity of data concerning the long-term outcomes, educational placement and quality of life of children implanted with hearing devices from large and representative samples of the population. To address this concern, a large, prospective, multicentre, multinational patient-outcomes registry for paediatric recipients of implantable hearing devices was developed. The benefits of this registry, its approach and methodology are described. Methods/Design The Cochlear™ Paediatric Implanted Recipient Observational Study (Cochlear P-IROS) is a prospective international patient-outcomes registry for children who are implanted in routine clinical practice with one or more hearing devices. The study aims to collect data on patient comorbidities, device use, auditory performance, quality of life and health-related utilities, across different types of implantable hearing devices from a range of manufacturers. Patients will be evaluated with a set of standardised and non-standardised questionnaires prior to initial device activation (baseline) and at six-monthly follow-up intervals up to 24 months and annually thereafter. The Cochlear P-IROS utilises a secure web interface to administer electronic case report forms to clinicians and families of implanted children. The web interface is currently available in five languages: English, Japanese, Korean, Mandarin and Russian. The interface also provides printable versions of the case report forms translated into 22 local languages for collection of data prior to entry online; additional languages may be added, as required. Participation in the Cochlear P-IROS registry is investigator-driven and voluntary. To date, the Cochlear P-IROS has recruited implant clinics across Australia, China, India, Indonesia, Turkey and Vietnam. The registry also aims to recruit multiple clinics in Cuba, Israel, Japan, Malaysia, Singapore, South Africa, South Korea and Russia. Discussion The use of a registry such as

  14. [Influence of the pelvic trauma registry of the DGU on treatment of pelvic ring fractures].

    PubMed

    Holstein, J H; Stuby, F M; Herath, S C; Culemann, U; Aghayev, E; Pohlemann, T

    2016-06-01

    Fractures of the pelvic ring are comparatively rare with an incidence of 2-8 % of all fractures depending on the study in question. The severity of pelvic ring fractures can be very different ranging from simple and mostly "harmless" type A fractures up to life-threatening complex type C fractures. Although it was previously postulated that high-energy trauma was necessary to induce a pelvic ring fracture, over the past decades it became more and more evident, not least from data in the pelvic trauma registry of the German Society for Trauma Surgery (DGU), that low-energy minor trauma can also cause pelvic ring fractures of osteoporotic bone and in a rapidly increasing population of geriatric patients insufficiency fractures of the pelvic ring are nowadays observed with no preceding trauma.Even in large trauma centers the number of patients with pelvic ring fractures is mostly insufficient to perform valid and sufficiently powerful monocentric studies on epidemiological, diagnostic or therapeutic issues. For this reason, in 1991 the first and still the only registry worldwide for the documentation and evaluation of pelvic ring fractures was introduced by the Working Group Pelvis (AG Becken) of the DGU. Originally, the main objectives of the documentation were epidemiological and diagnostic issues; however, in the course of time it developed into an increasingly expanding dataset with comprehensive parameters on injury patterns, operative and conservative therapy regimens and short-term and long-term outcome of patients. Originally starting with 10 institutions, in the meantime more than 30 hospitals in Germany and other European countries participate in the documentation of data. In the third phase of the registry alone, which was started in 2004, data from approximately 15,000 patients with pelvic ring and acetabular fractures were documented. In addition to the scientific impact of the pelvic trauma registry, which is reflected in the numerous national and

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

    NASA Technical Reports Server (NTRS)

    Mitchell, Andrew; Ramapriyan, Hampapuram; Lowe, Dawn

    2009-01-01

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

  16. Study protocol of a multicenter registry of patients with rheumatoid arthritis starting biologic therapy in Japan: Tsurumai Biologics Communication Registry (TBCR) study.

    PubMed

    Kojima, Toshihisa; Kaneko, Atsushi; Hirano, Yuji; Ishikawa, Hisato; Miyake, Hiroyuki; Oguchi, Takeshi; Takagi, Hideki; Yabe, Yuichiro; Kato, Takefumi; Ito, Takayasu; Terabe, Kenya; Fukaya, Naoki; Kanayama, Yasuhide; Shioura, Tomone; Funahashi, Koji; Hayashi, Masatoshi; Kato, Daizo; Matsubara, Hiroyuki; Fujibayashi, Takayoshi; Kojima, Masayo; Ishiguro, Naoki

    2012-06-01

    Biologic agents have proven to be effective against rheumatoid arthritis (RA) in clinical trials and post-marketing surveillance (PMS) studies. However, limited follow-up periods and strict criteria for recruitment might lead to an underestimation of adverse events. To document the long-term course of patients with RA treated with biologics in clinical settings, we established the Tsurumai Biologics Communication Registry (TBCR). First, we retrospectively collected data of patients registered for any biologic PMS study or clinical trial at participating institutes. Thus far, thirteen institutes have joined the registry and 860 patients have been identified. Comparing baseline characteristics by age and initiation year of biologics, young patients had significantly less joint damage and dysfunction and a higher dose of concomitant methotrexate (MTX) compared to older patients. Older age and functional class were significantly related to the incidence of adverse events that resulted in discontinuation of the 1st biologic treatment. The TBCR is in its initial stages, and information on all patients newly starting biologic therapy at participating institutes is being collected prospectively. Differences in baseline characteristics by age and initiation year of biologics need to be carefully evaluated in order to report on drug-related survival and long-term prognosis, using follow-up data in the near future. PMID:21892671

  17. Identifying belief targets to increase bone marrow registry participation among students who have never donated blood.

    PubMed

    Hyde, Melissa K; McLaren, Patrick J; White, Katherine M

    2014-01-01

    New members on bone marrow registries worldwide are needed to allow sufficient diversity in the donor pool to meet patient needs. We used the theory of planned behaviour belief-basis and surveyed students who had not donated blood previously (i.e. non-donors) (N = 150) about the behavioural, normative, and control beliefs informing their intentions to join the Australian Bone Marrow Donor Registry. Key beliefs predicting non-donors' intentions included: viewing bone marrow donation as an invasion of the body (β = -.35), normative support from parents (β = .40), anticipating pain/side effects from giving blood (β = -.27), and lack of knowledge about how to register (β = -.30). Few non-donors endorsed these beliefs, suggesting they are ideal targets for change in strategies encouraging bone marrow donor registration. PMID:23473418

  18. non-Hodgkin's lymphoma and occupation in Sweden: a registry based analysis.

    PubMed Central

    Linet, M S; Malker, H S; McLaughlin, J K; Weiner, J A; Blot, W J; Ericsson, J L; Fraumeni, J F

    1993-01-01

    Incidence of non-Hodgkin's lymphoma in different employment categories was evaluated from the Swedish Cancer-Environment Registry, which links cancer incidence during 1961 to 1979 with occupational information from the 1960 census. New associations were found for men employed in shoemaking and shoe repair, porcelain and earthenware industries, education, and other white collar occupations. Several findings supported associations found in other countries, including excesses among woodworkers, furniture makers, electric power plant workers, farmers, dairy workers, lorry drivers, and other land transport workers. Risks were not increased among chemists, chemical or rubber manufacturing workers, or petrochemical refinery workers. Caution must be used in drawing causal inferences from these linked registry data because information on exposure and duration of employment is not available. Nevertheless, this study has suggested new clues to possible occupational determinants of non-Hodgkin's lymphoma. PMID:8431395

  19. [Trauma registries: a health priority, a strategic project for the SEMICYUC].

    PubMed

    Chico Fernández, M; García Fuentes, C; Guerrero López, F

    2013-05-01

    The most efficient approach to traumatologic disease is prevention, but physicians also must supervise care of the victims. An operational and effective trauma registry requires financial support, adequate software, a well-defined population, personnel committed to training, and a detailed process for data collection, reporting, validation and the maintenance of confidentiality. Above all, however, motivation is required. Registries can offer many benefits in relation to these highly prevalent disorders, with an impact in terms of health promotion and even advantages in the form of cost reductions, as well as relief from the suffering caused by trauma (mortality, disability)-contributing to improve the efficiency and quality of critical trauma care. The SEMICYUC has demonstrated its ability to establish and maintain records of national interest, and this should become a priority project. PMID:23507334

  20. A Temporal Abstraction-based Extract, Transform and Load Process for Creating Registry Databases for Research.

    PubMed

    Post, Andrew; Kurc, Tahsin; Overcash, Marc; Cantrell, Dedra; Morris, Tim; Eckerson, Kristi; Tsui, Circe; Willey, Terry; Quyyumi, Arshed; Eapen, Danny; Umpierrez, Guillermo; Ziemer, David; Saltz, Joel

    2011-01-01

    In the CTSA era there is great interest in aggregating and comparing populations across institutions. These sites likely represent data differently in their clinical data warehouses and other databases. Clinical data warehouses frequently are structured in a generalized way that supports many constituencies. For research, there is a need to transform these heterogeneous data into a shared representation, and to perform categorization and interpretation to optimize the data representation for investigators. We are addressing this need by extending an existing temporal abstraction-based clinical database query system, PROTEMPA. The extended system allows specifying data types of interest in federated databases, extracting the data into a shared representation, transforming it through categorization and interpretation, and loading it into a registry database that can be refreshed. Such a registry's access control, data representation and query tools can be tailored to the needs of research while keeping local databases as the source of truth. PMID:22211179

  1. A Community-Based Hip Fracture Registry: Population, Methods, and Outcomes

    PubMed Central

    Inacio, Maria C S; Weiss, Jennifer M; Miric, Alex; Hunt, Jessica J; Zohman, Gary L; Paxton, Elizabeth W

    2015-01-01

    Introduction: Hip fracture is associated with substantial morbidity and mortality. A large integrated health care system developed a registry to characterize its current patient population with hip fractures. This report describes the population, methods used, and outcomes of patients registered during the initial three years (2009–2011). Methods: Cases of hip fracture recorded from January 2009 through December 2011 were ascertained using the Kaiser Permanente Hip Fracture Registry. The registry collects information on patient, procedure, surgeon, facility, and surgical outcomes. Outcomes monitored included length of stay, readmissions, mortality, revisions, surgical site infections, deep vein thrombosis, pulmonary embolism, pneumonia, pressure ulcers, dislocations, and myocardial infarction. Results: The population (N = 12,562) was predominantly white (77.8%), women (68.6%), and older (71.6% aged ≥ 75 years), and 32% had at least 5 comorbidities. The average length of follow-up was 1.1 years (standard deviation = 0.9). The most prevalent comorbidities were hypertension (70.8%) and anemia (29.4%). Femoral neck fractures (54.6%) were the most common fracture type. Hemiarthroplasty was the most common procedure (33.1%). Most fractures were treated by medium-volume (10 to 29 cases per year) surgeons (68.4%) at high-volume (≥ 130 cases per year) facilities (63.0%). The 90-day readmission rate was 22.1%, and the mortality rate was 12.3%. The most common postoperative complications were pneumonia (11.4%) and pressure ulcers (2.9%). There were 2.2 revisions per 100 observation years. Conclusion: A hip fracture registry provides important information regarding patient characteristics, intraoperative practices, and postoperative outcomes, which can be analyzed, interpreted, and used to reduce morbidity and mortality. PMID:26057682

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

    SciTech Connect

    Ehrhart, Susan M.; Filipy, Ronald E.

    2001-07-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 2000 through January 2001.

  3. Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry

    PubMed Central

    Robinson, Angela Byun; Hoeltzel, Mark F.; Wahezi, Dawn M.; Becker, Mara L.; Kessler, Elizabeth A.; Schmeling, Heinrike; Carrasco, Ruy; Huber, Adam M.; Feldman, Brian M.; Reed, Ann M.

    2014-01-01

    Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross-sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and >34% of these subjects reported ≥1 negative study. Ninety-five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM. PMID:23983017

  4. Rationale and design of the African group A streptococcal infection registry: the AFROStrep study

    PubMed Central

    Barth, Dylan D; Engel, Mark E; Whitelaw, Andrew; Alemseged, Abdissa; Sadoh, Wilson E; Ali, Sulafa K M; Sow, Samba O; Dale, James; Mayosi, Bongani M

    2016-01-01

    Introduction Group A β-haemolytic Streptococcus (GAS), a Gram-positive bacterium, also known as Streptococcus pyogenes, causes pyoderma, pharyngitis and invasive disease. Repeated GAS infections may lead to autoimmune diseases such as acute post-streptococcal glomerulonephritis, acute rheumatic fever (ARF) and rheumatic heart disease (RHD). Invasive GAS (iGAS) disease is an important cause of mortality and morbidity worldwide. The burden of GAS infections is, however, unknown in Africa because of lack of surveillance systems. Methods and analysis The African group A streptococcal infection registry (the AFROStrep study) is a collaborative multicentre study of clinical, microbiological, epidemiological and molecular characteristics for GAS infection in Africa. The AFROStrep registry comprises two components: (1) active surveillance of GAS pharyngitis cases from sentinel primary care centres (non-iGAS) and (2) passive surveillance of iGAS disease from microbiology laboratories. Isolates will also be subjected to DNA isolation to allow for characterisation by molecular methods and cryopreservation for long-term storage. The AFROStrep study seeks to collect comprehensive data on GAS isolates in Africa. The biorepository will serve as a platform for vaccine development in Africa. Ethics and dissemination Ethics approval for the AFROStrep registry has been obtained from the Human Research Ethics Committee at the University of Cape Town (HREC/REF: R006/2015). Each recruiting site will seek ethics approval from their local ethics’ committee. All participants will be required to provide consent for inclusion into the registry as well as for the storage of isolates and molecular investigations to be conducted thereon. Strict confidentiality will be applied throughout. Findings and updates will be disseminated to collaborators, researchers, health planners and colleagues through peer-reviewed journal articles, conference publications and proceedings. PMID:26916694

  5. Danish Hip Arthroscopy Registry: an epidemiologic and perioperative description of the first 2000 procedures

    PubMed Central

    Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels; Kraemer, Otto; Hölmich, Per; Winge, Søren; Lund, Bent; Lind, Martin

    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. We describe the use of various Patient Related Outcome Measures related to non-arthritic hip patients. The 2000 procedures consisted of 56% females and 44% males. Mean age 37.5 years, mean surgical time was 86.5 min and mean traction time 50.5 min. The most frequently performed procedure was CAM and Pincer resection in 93.5% of the cases. Labral refixation or repair was done in 70.3% of the cases. The most common type of acetabular chondral damage was grade II lesions (36.6%). Grade III and IV changes were seen in 36.1% of the cases. The preoperative iHOT12 was 45 (mean) based on all 12 items. EQ-5D 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 and scientific tool. PMID:27583150

  6. Danish Hip Arthroscopy Registry: an epidemiologic and perioperative description of the first 2000 procedures.

    PubMed

    Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels; Kraemer, Otto; Hölmich, Per; Winge, Søren; Lund, Bent; Lind, Martin

    2016-07-01

    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. We describe the use of various Patient Related Outcome Measures related to non-arthritic hip patients. The 2000 procedures consisted of 56% females and 44% males. Mean age 37.5 years, mean surgical time was 86.5 min and mean traction time 50.5 min. The most frequently performed procedure was CAM and Pincer resection in 93.5% of the cases. Labral refixation or repair was done in 70.3% of the cases. The most common type of acetabular chondral damage was grade II lesions (36.6%). Grade III and IV changes were seen in 36.1% of the cases. The preoperative iHOT12 was 45 (mean) based on all 12 items. EQ-5D 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 and scientific tool. PMID:27583150

  7. Renal replacement therapy in Europe: a summary of the 2012 ERA-EDTA Registry Annual Report

    PubMed Central

    Pippias, Maria; Stel, Vianda S.; Abad Diez, José Maria; Afentakis, Nikolaos; Herrero-Calvo, Jose Antonio; Arias, Manuel; Tomilina, Natalia; Bouzas Caamaño, Encarnación; Buturovic-Ponikvar, Jadranka; Čala, Svjetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Alonso de la Torre, Ramón; García Bazaga, Maria de los Ángeles; De Meester, Johan; Díaz, Joan Manuel; Djukanovic, Ljubica; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; González Fernández, Raquel; Gutiérrez Avila, Gonzalo; Heaf, James; Hoitsma, Andries; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Kramer, Anneke; Lassalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Noordzij, Marlies; Palsson, Runolfur; Pechter, Ülle; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Süleymanlar, Gültekin; Van Stralen, Karlijn; Thereska, Nestor; Wanner, Christoph; Jager, Kitty J.

    2015-01-01

    Background This article summarizes the 2012 European Renal Association—European Dialysis and Transplant Association Registry Annual Report (available at www.era-edta-reg.org) with a specific focus on older patients (defined as ≥65 years). Methods Data provided by 45 national or regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. Individual patient level data were received from 31 renal registries, whereas 14 renal registries contributed data in an aggregated form. The incidence, prevalence and survival probabilities of patients with end-stage renal disease (ESRD) receiving renal replacement therapy (RRT) and renal transplantation rates for 2012 are presented. Results In 2012, the overall unadjusted incidence rate of patients with ESRD receiving RRT was 109.6 per million population (pmp) (n = 69 035), ranging from 219.9 pmp in Portugal to 24.2 pmp in Montenegro. The proportion of incident patients ≥75 years varied from 15 to 44% between countries. The overall unadjusted prevalence on 31 December 2012 was 716.7 pmp (n = 451 270), ranging from 1670.2 pmp in Portugal to 146.7 pmp in the Ukraine. The proportion of prevalent patients ≥75 years varied from 11 to 32% between countries. The overall renal transplantation rate in 2012 was 28.3 pmp (n = 15 673), with the highest rate seen in the Spanish region of Catalonia. The proportion of patients ≥65 years receiving a transplant ranged from 0 to 35%. Five-year adjusted survival for all RRT patients was 59.7% (95% confidence interval, CI: 59.3–60.0) which fell to 39.3% (95% CI: 38.7–39.9) in patients 65–74 years and 21.3% (95% CI: 20.8–21.9) in patients ≥75 years. PMID:26034584

  8. Takotsubo cardiomyopathy: A potentially serious trap (Data from the International Takotsubo Cardiomyopathy Registry)

    PubMed Central

    Wagdy, Kerolos; ElMaghawry, Mohamed

    2015-01-01

    Takotsubo cardiomyopathy (TTC) is an acute cardiac condition characterized by transient left ventricular dysfunction with wall motion abnormalities, most commonly in the form of apical ballooning. Despite being considered as a generally benign condition, many studies have emphasized potentially sinister outcomes associated with TTC. In this article, we review the most recent results of the International Takotsubo Registry, which investigated the clinical features, prognostic predictors, and outcomes of 1750 patients. PMID:26779527

  9. Rationale, Design, Methodology and Hospital Characteristics of the First Gulf Acute Heart Failure Registry (Gulf CARE)

    PubMed Central

    Sulaiman, Kadhim J.; Panduranga, Prashanth; Al-Zakwani, Ibrahim; Alsheikh-Ali, Alawi; Al-Habib, Khalid; Al-Suwaidi, Jassim; Al-Mahmeed, Wael; Al-Faleh, Husam; El-Asfar, Abdelfatah; Al-Motarreb, Ahmed; Ridha, Mustafa; Bulbanat, Bassam; Al-Jarallah, Mohammed; Bazargani, Nooshin; Asaad, Nidal; Amin, Haitham

    2014-01-01

    Background: There is paucity of data on heart failure (HF) in the Gulf Middle East. The present paper describes the rationale, design, methodology and hospital characteristics of the first Gulf acute heart failure registry (Gulf CARE). Materials and Methods: Gulf CARE is a prospective, multicenter, multinational registry of patients >18 year of age admitted with diagnosis of acute HF (AHF). The data collected included demographics, clinical characteristics, etiology, precipitating factors, management and outcomes of patients admitted with AHF. In addition, data about hospital readmission rates, procedures and mortality at 3 months and 1-year follow-up were recorded. Hospital characteristics and care provider details were collected. Data were entered in a dedicated website using an electronic case record form. Results: A total of 5005 consecutive patients were enrolled from February 14, 2012 to November 13, 2012. Forty-seven hospitals in 7 Gulf States (Oman, Saudi Arabia, Yemen, Kuwait, United Gulf Emirates, Qatar and Bahrain) participated in the project. The majority of hospitals were community hospitals (46%; 22/47) followed by non-University teaching (32%; 15/47 and University hospitals (17%). Most of the hospitals had intensive or coronary care unit facilities (93%; 44/47) with 59% (28/47) having catheterization laboratory facilities. However, only 29% (14/47) had a dedicated HF clinic facility. Most patients (71%) were cared for by a cardiologist. Conclusions: Gulf CARE is the first prospective registry of AHF in the Middle East, intending to provide a unique insight into the demographics, etiology, management and outcomes of AHF in the Middle East. HF management in the Middle East is predominantly provided by cardiologists. The data obtained from this registry will help the local clinicians to identify the deficiencies in HF management as well as provide a platform to implement evidence based preventive and treatment strategies to reduce the burden of HF in

  10. The Latin American DILI Registry Experience: A Successful Ongoing Collaborative Strategic Initiative.

    PubMed

    Bessone, Fernando; Hernandez, Nelia; Lucena, M Isabel; Andrade, Raúl J

    2016-01-01

    Drug induced liver injury (DILI) is a rare but well recognized serious adverse reaction. Pre-marketing studies may not detect liver injury, and DILI becomes very often apparent after the drug is launched to the market. Specific biomarkers for DILI prediction or diagnosis are not available. Toxic liver reactions present with a wide spectrum of phenotypes and severity, and our knowledge on the mechanisms underlying idiosyncratic reactions and individual susceptibility is still limited. To overcome these limitations, country-based registries and multicenter research networks have been created in Europe and North America. Reliable epidemiological data on DILI in Latin America (LA), a region with a large variety of ethnic groups, were however lacking. Fortunately, a LA network of DILI was set up in 2011, with the support of the Spanish DILI Registry from the University of Malaga. The primary aim of the Latin DILI Network (LATINDILIN) Registry was to prospectively identify bona fide DILI cases and to collect biological samples to study genetic biomarkers. Physicians involved in the project must complete a structured report form describing the DILI case presentation and follow-up which is submitted to a Coordinator Center in each country, where it is further assessed for completeness. During the last four years, several LA countries (Argentina, Uruguay, Chile, Mexico, Paraguay, Brazil, Ecuador, Peru, Venezuela and Colombia) have joined the network and committed with this project. At that point, to identify both our strengths and weaknesses was a very important issue. In this review, we will describe how the LATINDILI Registry was created. The aims and methods to achieve these objectives will be discussed in depth. Additionally, both the difficulties we have faced and the strategies to solve them will be also pinpointed. Finally, we will report on our preliminary results, and discuss ideas to expand and to keep running this network. PMID:26938524

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

    SciTech Connect

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

    1996-07-01

    The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from October 1994 through September 1995.

  12. The Latin American DILI Registry Experience: A Successful Ongoing Collaborative Strategic Initiative

    PubMed Central

    Bessone, Fernando; Hernandez, Nelia; Lucena, M. Isabel; Andrade, Raúl J.

    2016-01-01

    Drug induced liver injury (DILI) is a rare but well recognized serious adverse reaction. Pre-marketing studies may not detect liver injury, and DILI becomes very often apparent after the drug is launched to the market. Specific biomarkers for DILI prediction or diagnosis are not available. Toxic liver reactions present with a wide spectrum of phenotypes and severity, and our knowledge on the mechanisms underlying idiosyncratic reactions and individual susceptibility is still limited. To overcome these limitations, country-based registries and multicenter research networks have been created in Europe and North America. Reliable epidemiological data on DILI in Latin America (LA), a region with a large variety of ethnic groups, were however lacking. Fortunately, a LA network of DILI was set up in 2011, with the support of the Spanish DILI Registry from the University of Malaga. The primary aim of the Latin DILI Network (LATINDILIN) Registry was to prospectively identify bona fide DILI cases and to collect biological samples to study genetic biomarkers. Physicians involved in the project must complete a structured report form describing the DILI case presentation and follow-up which is submitted to a Coordinator Center in each country, where it is further assessed for completeness. During the last four years, several LA countries (Argentina, Uruguay, Chile, Mexico, Paraguay, Brazil, Ecuador, Peru, Venezuela and Colombia) have joined the network and committed with this project. At that point, to identify both our strengths and weaknesses was a very important issue. In this review, we will describe how the LATINDILI Registry was created. The aims and methods to achieve these objectives will be discussed in depth. Additionally, both the difficulties we have faced and the strategies to solve them will be also pinpointed. Finally, we will report on our preliminary results, and discuss ideas to expand and to keep running this network. PMID:26938524

  13. The Danish National Patient Registry: a review of content, data quality, and research potential

    PubMed Central

    Schmidt, Morten; Schmidt, Sigrun Alba Johannesdottir; Sandegaard, Jakob Lynge; Ehrenstein, Vera; Pedersen, Lars; Sørensen, Henrik Toft

    2015-01-01

    Background The Danish National Patient Registry (DNPR) is one of the world’s oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithms for identifying health events in the DNPR, but the reports are fragmented and no overview exists. Objectives To review the content, data quality, and research potential of the DNPR. Methods We examined the setting, history, aims, content, and classification systems of the DNPR. We searched PubMed and the Danish Medical Journal to create a bibliography of validation studies. We included also studies that were referenced in retrieved papers or known to us beforehand. Methodological considerations related to DNPR data were reviewed. Results During 1977–2012, the DNPR registered 8,085,603 persons, accounting for 7,268,857 inpatient, 5,953,405 outpatient, and 5,097,300 emergency department contacts. The DNPR provides nationwide longitudinal registration of detailed administrative and clinical data. It has recorded information on all patients discharged from Danish nonpsychiatric hospitals since 1977 and on psychiatric inpatients and emergency department and outpatient specialty clinic contacts since 1995. For each patient contact, one primary and optional secondary diagnoses are recorded according to the International Classification of Diseases. The DNPR provides a data source to identify diseases, examinations, certain in-hospital medical treatments, and surgical procedures. Long-term temporal trends in hospitalization and treatment rates can be studied. The positive predictive values of diseases and treatments vary widely (<15%–100%). The DNPR data are linkable at the patient level with data from other Danish administrative registries, clinical registries, randomized controlled trials, population surveys, and epidemiologic field studies – enabling researchers to reconstruct individual life and health trajectories for an entire population. Conclusion The DNPR is a valuable

  14. The European Registry for Patients with Mechanical Circulatory Support (EUROMACS): first annual report.

    PubMed

    de By, Theo M M H; Mohacsi, Paul; Gummert, Jan; Bushnaq, Hasan; Krabatsch, Thomas; Gustafsson, Finn; Leprince, Pascal; Martinelli, Luigi; Meyns, Bart; Morshuis, Michiel; Netuka, Ivan; Potapov, Evgenij; Zittermann, Armin; Delmo Walter, Eva Maria; Hetzer, Roland

    2015-05-01

    The European Registry for Patients with Mechanical Circulatory Support (EUROMACS) was founded on 10 December 2009 with the initiative of Roland Hetzer (Deutsches Herzzentrum Berlin, Berlin, Germany) and Jan Gummert (Herz- und Diabeteszentrum Nordrhein-Westfalen, Bad Oeynhausen, Germany) with 15 other founding international members. It aims to promote scientific research to improve care of end-stage heart failure patients with ventricular assist device or a total artificial heart as long-term mechanical circulatory support. Likewise, the organization aims to provide and maintain a registry of device implantation data and long-term follow-up of patients with mechanical circulatory support. Hence, EUROMACS affiliated itself with Dendrite Clinical Systems Ltd to offer its members a software tool that allows input and analysis of patient clinical data on a daily basis. EUROMACS facilitates further scientific studies by offering research groups access to any available data wherein patients and centres are anonymized. Furthermore, EUROMACS aims to stimulate cooperation with clinical and research institutions and with peer associations involved to further its aims. EUROMACS is the only European-based Registry for Patients with Mechanical Circulatory Support with rapid increase in institutional and individual membership. Because of the expeditious data input, the European Association for Cardiothoracic Surgeons saw the need to optimize the data availability and the significance of the registry to improve care of patients with mechanical circulatory support and its potential contribution to scientific intents; hence, the beginning of their alliance in 2012. This first annual report is designed to provide an overview of EUROMACS' structure, its activities, a first data collection and an insight to its scientific contributions. PMID:25820161

  15. Registries and evidence-based medicine in craniofacial and plastic surgery.

    PubMed

    Drolet, Brian C; Lorenzi, Nancy M

    2012-01-01

    Evidence-based medicine is a vital process for maintaining and improving quality and value in health care. However, evidence-based practice is most limited by the availability of research and outcomes data. Although randomized controlled trials (RCTs) have been identified by numerous research organizations as the criterion standard for research methodology (eg, "level I evidence"), the execution of well-designed RCTs has proved either challenging or impossible in many surgical fields and with rare disease conditions. In particular, craniofacial and plastic surgery has been noted to be lacking in both the number and quality of RCTs. Many reasons are discussed for this dearth of research including inadequate sample size and challenges in randomization, blinding, and clinical equipoise. Yet, data for outcomes assessment are highly valued by surgeons and by consumers and payers. Therefore, alternative and more practical means for research and data collection must be sought. Observational studies of clinical practice are particularly useful for outcomes assessment despite relegation to a lower tier of evidence (eg, "level II evidence"). Functional databases with well-defined processes for data collection, called medical data registries, are an essential informatics tool to collect and store outcomes data and produce high-quality observational, practice-based research studies. A properly designed and implemented registry can provide surgeons with an abundance of data to perform research and quality improvement projects. In fact, registries may be superior in many ways to RCTs for craniofacial and plastic surgeons both pragmatically and functionally. In this commentary, we discuss the production of such registries in the framework of evidence-based practice and the relevant studies in craniofacial surgery. PMID:22337430

  16. Recurrent and de novo disease after renal transplantation: a report from the Renal Allograft Disease Registry.

    PubMed

    Hariharan, Sundaram; Savin, Virginia J

    2004-08-01

    Recurrent and de novo disease is an increasing problem and is known to negatively impact transplant graft survival. Immunosuppressive medications have not had an impact on the prevalence of recurrent and de novo disease. Renal Allograft Disease Registry (RADR) was established to study the prevalence, impact and risk factors for the development of recurrent and de novo disease. Retrospective and prospective study on recurrent disease is discussed in this manuscript. PMID:15265160

  17. Evidence for a need to mandate kidney transplant living donor registries.

    PubMed

    Emara, Mahmoud; Ragheb, Ahmed; Hassan, Abubaker; Shoker, Ahmed

    2008-01-01

    Kidney disease is a global public health problem of growing proportions. Currently the best treatment for end-stage renal failure is transplantation. Living organ donation remains a complex ethical, moral and medical issue. It is based on a premise that kidney donation is associated with short-term minimal risks to harm the donor, and is outweighed by the definite advantages to the recipient. A growing number of patients with end-stage renal disease and shortage of kidney donors poses a pressing need to expand the criteria needed to accept kidney donors. The current donor registries are structured and are driven to expand donor pool. As living kidney donation is not without risks, more attention should be given to protect the donor health. After kidney donation, mild to moderate renal insufficiency may occur. Renal insufficiency, even mild, is associated with increased risks of hypertension, proteinuria and cardiovascular morbidity. We, therefore, foresee a need to mandate the establishment of renal transplant donor registries at all transplanting programs as a prerequisite to protect the long-term well being of kidney donors. These registries can collect the database necessary to develop standards of practice and guidelines for future kidney donation. PMID:18549448

  18. The sudden unexpected infant death case registry: a method to improve surveillance.

    PubMed

    Shapiro-Mendoza, Carrie K; Camperlengo, Lena T; Kim, Shin Y; Covington, Theresa

    2012-02-01

    This article describes a multistate population-based surveillance system for monitoring sudden unexpected infant deaths (SUIDs) known as the SUID Case Registry pilot program. The pilot program represents collaboration between the Centers for Disease Control and Prevention and the National Center for Child Death Review (NCCDR), which is funded by the Health Resources and Services Administration. The SUID Case Registry builds on existing child death review system activities and protocols. The objectives of the SUID Case Registry are to collect accurate and consistent population-based data about the circumstances and events associated with SUID cases, to improve the completeness and quality of SUID case investigations, and to use a decision-making algorithm with standardized definitions to categorize SUID cases. States who participate in the pilot program commit to review all SUID cases in their state by using their multidisciplinary state and local child death review teams. These teams request and review data from death scene investigators, medical examiners and coroners, law enforcement, social services, pediatric and obstetric providers, and public health per usual, but as part of the pilot program, supplement their SUID case reviews by discussing additional medical, environmental, and behavioral factors, and entering this data using the NCCDR Web-based Case Reporting System. This new surveillance system aims to improve knowledge of factors surrounding SUID events and improve investigation practices. The surveillance system will allow researchers and program planners to create prevention strategies and interventions, ultimately reducing SUIDs and injury-related infant deaths. PMID:22232303

  19. Practice-Based Evidence to Evidence-Based Practice: Building the National Radiation Oncology Registry

    PubMed Central

    Efstathiou, Jason A.; Nassif, Deborah S.; McNutt, Todd R.; Bogardus, C. Bob; Bosch, Walter; Carlin, Jeffrey; Chen, Ronald C.; Chou, Henry; Eggert, Dave; Fraass, Benedick A.; Goldwein, Joel; Hoffman, Karen E.; Hotz, Ken; Hunt, Margie; Kessler, Marc; Lawton, Colleen A.F.; Mayo, Charles; Michalski, Jeff M.; Mutic, Sasa; Potters, Louis; Rose, Christopher M.; Sandler, Howard M.; Sharp, Gregory; Tomé, Wolfgang; Tran, Phuoc T.; Wall, Terry; Zietman, Anthony L.; Gabriel, Peter E.; Bekelman, Justin E.

    2013-01-01

    The National Radiation Oncology Registry (NROR), sponsored by the Radiation Oncology Institute and the American Society for Radiation Oncology, is designed to collect standardized information on cancer care delivery among patients treated with radiotherapy in the United States and will focus on patients with prostate cancer. Stakeholders were engaged through a forum that emphasized the need for patient-centered outcomes, minimal data burden, and maximal connectivity to existing registries and databases. An electronic infrastructure is under development to provide connectivity across radiation oncology and hospital information systems. The NROR Gateway features automatic abstraction as well as aggregation of treatment and outcome data. The prostate cancer data dictionary provides standardized elements in four domains: facility, physician, patient, and treatment. The pilot phase will consist of clinical centers chosen to provide a representative mix of radiation treatment modalities, facility types, population-based settings, and regional locations. The initial set of radiation practice metrics includes physician board certification and maintenance, ordering of staging scans, active surveillance discussion, dose prescriptions for low-risk/high-risk disease, radiation fields for low-risk/high-risk disease, image-guided radiation therapy use, androgen deprivation therapy use, post-brachytherapy implant computed tomography dosimetry, collection of toxicity assessments, and longitudinal patient follow-up. The NROR pilot study will provide the framework for expansion to a nationwide electronic registry for radiation oncology. PMID:23942508

  20. The CIRSE Retrievable IVC Filter Registry: Retrieval Success Rates in Practice.

    PubMed

    Lee, M J; Valenti, D; de Gregorio, M A; Minocha, J; Rimon, U; Pellerin, O

    2015-12-01

    CIRSE established a registry of retrievable filter use with the primary aim of determining the success of IVC Filter retrieval and associated complications. Secondary endpoints included filter indications, imaging strategies before retrieval, filter dwell times, and anticoagulation status. A web-based electronic registry was hosted between 01/12/2010 and 30/06/2012. Data entry occurred at the date of IVC filter retrieval and included items such as filter type, indication for filter insertion, access route, dwell time, retrieval success, complications, reasons for failed retrieval, and anticoagulation status. 671 filter retrievals were entered (male:female 333:295, mean age 55, median 57). Retrieval data were not entered in 43/671 leaving 628 patients for analysis. The 4 commonest retrievable filters used were the Celect in 182 patients, the OPTEASE in 161, ALN in 120, and Gunther Tulip in 98. Filters were inserted for absolute indications 40%, relative indications in 31%, and prophylactic in 24%, with 5% missing. Mean filter dwell time was 90 days. Filters were successfully retrieved in 576/628 patients (92%). The mean dwell time for successful retrievals was 85 days versus 145 days for unsuccessful retrievals (p = 0.001). Major complications occurred in 2 patients (0.03%). In summary, the CIRSE retrievable filter registry demonstrates a retrieval rate of 92% across a range of filter types, with a low major complication rate, reflecting current practice. There is an increase in trend of retrievable filter use for relative and prophylactic indications. PMID:25933644

  1. Charting improvements in US registry HLA typing ambiguity using a typing resolution score.

    PubMed

    Paunić, Vanja; Gragert, Loren; Schneider, Joel; Müller, Carlheinz; Maiers, Martin

    2016-07-01

    Unrelated stem cell registries have been collecting HLA typing of volunteer bone marrow donors for over 25years. Donor selection for hematopoietic stem cell transplantation is based primarily on matching the alleles of donors and patients at five polymorphic HLA loci. As HLA typing technologies have continually advanced since the beginnings of stem cell transplantation, registries have accrued typings of varied HLA typing ambiguity. We present a new typing resolution score (TRS), based on the likelihood of self-match, that allows the systematic comparison of HLA typings across different methods, data sets and populations. We apply the TRS to chart improvement in HLA typing within the Be The Match Registry of the United States from the initiation of DNA-based HLA typing to the current state of high-resolution typing using next-generation sequencing technologies. In addition, we present a publicly available online tool for evaluation of any given HLA typing. This TRS objectively evaluates HLA typing methods and can help define standards for acceptable recruitment HLA typing. PMID:27163154

  2. Airway registry: a performance improvement surveillance project of emergency department airway management.

    PubMed

    Phelan, Michael P; Glauser, Jonathan; Yuen, Ho-Wang A; Sturges-Smith, Elizabeth; Schrump, Stefanie E

    2010-01-01

    The aim of this study was to determine if use of a standardized airway data collection sheet can survey airway management practices in an emergency department. Success rates and trends from the authors' facility have been benchmarked against the National Emergency Airway Registry (NEAR). This study included all patients requiring invasive airway management during a 21-month period (July 1, 2005, through March 31, 2007). An audit form was developed and implemented to collect data on intubations. During the study period, 224 patients required invasive airway control. Of all airways managed by emergency medicine residents, the intubation success rate was 99% (200/203; 95% confidence interval [CI] = 96%-100%), with 3% of those (6/203; 95% CI = 1%-6%) requiring more than 3 attempts; 3 patients (1%; 95% CI = 0%-4%) could not be intubated and required a surgical airway. Use of an airway registry based on the NEAR registry as a benchmark of rates and types of successful intubation allows comparison of airway practices. PMID:20505111

  3. I Brazilian Registry of Heart Failure - Clinical Aspects, Care Quality and Hospitalization Outcomes

    PubMed Central

    de Albuquerque, Denilson Campos; de Souza, João David; Bacal, Fernando; Rohde, Luiz Eduardo Paim; Bernardez-Pereira, Sabrina; Berwanger, Otavio; Almeida, Dirceu Rodrigues

    2015-01-01

    Background Heart failure (HF) is one of the leading causes of hospitalization in adults in Brazil. However, most of the available data is limited to unicenter registries. The BREATHE registry is the first to include a large sample of hospitalized patients with decompensated HF from different regions in Brazil. Objective Describe the clinical characteristics, treatment and prognosis of hospitalized patients admitted with acute HF. Methods Observational registry study with longitudinal follow-up. The eligibility criteria included patients older than 18 years with a definitive diagnosis of HF, admitted to public or private hospitals. Assessed outcomes included the causes of decompensation, use of medications, care quality indicators, hemodynamic profile and intrahospital events. Results A total of 1,263 patients (64±16 years, 60% women) were included from 51 centers from different regions in Brazil. The most common comorbidities were hypertension (70.8%), dyslipidemia (36.7%) and diabetes (34%). Around 40% of the patients had normal left ventricular systolic function and most were admitted with a wet-warm clinical-hemodynamic profile. Vasodilators and intravenous inotropes were used in less than 15% of the studied cohort. Care quality indicators based on hospital discharge recommendations were reached in less than 65% of the patients. Intrahospital mortality affected 12.6% of all patients included. Conclusion The BREATHE study demonstrated the high intrahospital mortality of patients admitted with acute HF in Brazil, in addition to the low rate of prescription of drugs based on evidence. PMID:26131698

  4. Comparison of Eligibility Criteria Between Protocols, Registries, and Publications of Cancer Clinical Trials.

    PubMed

    Zhang, Sheng; Liang, Fei; Li, Wenfeng; Tannock, Ian

    2016-11-01

    Trial registration and public accessibility of appended or published protocols of phase III randomized clinical trials (RCTs) allow comparison of reported research with essential aspects of trial design. We determined how eligibility criteria of participants specified in protocols were described in trial registries and articles of 255 cancer RCTs published in leading journals. The mean proportion of matching eligibility criteria between protocols and publications per trial (the primary endpoint) was 44.0% (95% confidence interval [CI] = 40.8% to 47.3%). Almost all discrepancies in eligibility criteria (96.7%, 95% CI = 96.1% to 97.3%) suggested to readers of articles that a broader study population was included. The mean proportion of matching eligibility criteria between protocols and registries was 72.9% (95% CI = 68.2% to 77.7%, the secondary endpoint). We conclude that there are substantial differences in eligibility criteria between trial protocols, registries and articles. Inaccurate reporting of eligibility criteria may prevent appropriate assessment of the applicability of trial results. PMID:27226519

  5. Feasibility of creating a National ALS Registry using administrative data in the United States

    PubMed Central

    KAYE, WENDY E.; SANCHEZ, MARCHELLE; WU, JENNIFER

    2015-01-01

    Uncertainty about the incidence and prevalence of amyotrophic lateral sclerosis (ALS), as well as the role of the environment in the etiology of ALS, supports the need for a surveillance system/registry for this disease. Our aim was to evaluate the feasibility of using existing administrative data to identify cases of ALS. The Agency for Toxic Substances and Disease Registry (ATSDR) funded four pilot projects at tertiary care facilities for ALS, HMOs, and state based organizations. Data from Medicare, Medicaid, the Veterans Health Administration, and Veterans Benefits Administration were matched to data available from site-specific administrative and clinical databases for a five-year time-period (1 January 2001–31 December 2005). Review of information in the medical records by a neurologist was considered the gold standard for determining an ALS case. We developed an algorithm using variables from the administrative data that identified true cases of ALS (verified by a neurologist). Individuals could be categorized into ALS, possible ALS, and not ALS. The best algorithm had sensitivity of 87% and specificity of 85%. We concluded that administrative data can be used to develop a surveillance system/ registry for ALS. These methods can be explored for creating surveillance systems for other neurodegenerative diseases. PMID:24597459

  6. United States transuranium and uranium registries. Annual report, October 1, 1995--September 30, 1996

    SciTech Connect

    Kathren, R.L.; Ehrhart, S.M.

    1997-04-01

    This Annual Report covers the period October 1, 1995 through September 30, 1996, and includes both scientific and administrative activities. As of September 30, 1996, the Registries had a total of 886 registrants of whom 350 were deceased and 292 classified as active. An anticipated funding cut of approximately 35% for the period beginning October 1, 1996, necessitated some staff cuts, but it is anticipated that the Registries core research will be maintained albeit at a somewhat slower pace. The Registries received approximately 60 public information requests or inquiries ranging over a wide range of topics, about a third of which came from the media or official agencies, including Congress. Specific noteworthy inquiries were received from the President`s Advisory Committee on the Gulf War Veterans with regard to uranium biokinetics and toxicity, and from the County of Los Angeles and the State of California with regard to the management and dosimetry of two separate instances of acute accidental intakes of {sup 241}Am.

  7. Using a statistical process control chart during the quality assessment of cancer registry data.

    PubMed

    Myles, Zachary M; German, Robert R; Wilson, Reda J; Wu, Manxia

    2011-01-01

    Statistical process control (SPC) charts may be used to detect acute variations in the data while simultaneously evaluating unforeseen aberrations that may warrant further investigation by the data user. Using cancer stage data captured by the Summary Stage 2000 (SS2000) variable, we sought to present a brief report highlighting the utility of the SPC chart during the quality assessment of cancer registry data. Using a county-level caseload for the diagnosis period of 2001-2004 (n=25,648), we found the overall variation of the SS2000 variable to be in control during diagnosis years of 2001 and 2002, exceeded the lower control limit (LCL) in 2003, and exceeded the upper control limit (UCL) in 2004; in situ/localized stages were in control throughout the diagnosis period, regional stage exceeded UCL in 2004, and distant stage exceeded the LCL in 2001 and the UCL in 2004. Our application of the SPC chart with cancer registry data illustrates that the SPC chart may serve as a readily available and timely tool for identifying areas of concern during the data collection and quality assessment of central cancer registry data. PMID:22223059

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

    SciTech Connect

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

    1994-10-01

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

  9. Comorbidity profile in dementia with Lewy bodies versus Alzheimer’s disease: a linkage study between the Swedish Dementia Registry and the Swedish National Patient Registry

    PubMed Central

    2014-01-01

    Introduction Compared to Alzheimer’s disease (AD), dementia with Lewy bodies (DLB) is usually associated with a more complex clinical picture and higher burden of care. Yet, few investigations have been performed on comorbidities and risk factors of DLB. Therefore, we aimed to compare clinical risk factors and comorbidity profile in DLB and AD patients using two nationwide registries. Methods This is a linkage study between the Swedish dementia registry (SveDem) and the Swedish National Patient Registry conducted on 634 subjects with DLB and 9161 individuals with AD registered during the years 2007–2012. Comorbidity profile has been coded according to the International Classification of Diseases version 10 (ICD 10) in addition to the date of each event. The main chapters of the ICD-10, the Charlson score of comorbidities and a selected number of neuropsychiatric diseases were compared between the DLB and AD groups. Comorbidity was registered before and after the dementia diagnosis. Results “Mental and behavioral disorders”, “diseases of the nervous system”, “diseases of the eye and adnexa”, diseases of the “circulatory”, “respiratory”, and “genitourinary” systems, “diseases of the skin and subcutaneous tissue” and “diseases of the musculoskeletal system and connective tissue” occurred more frequently in the DLB group after multivariate adjustment. Depression [adjusted OR = 2.12 (95%CI 1.49 to 3.03)] and migraine [adjusted OR = 3.65 (95%CI 1.48 to 9.0)] were more commonly recorded before the diagnosis of dementia in the DLB group. Following dementia diagnosis, ischemic stroke [adjusted OR = 1.89 (95%CI 1.21 to 2.96)] was more likely to happen among the DLB patients compared to the AD population. Conclusions Our study indicated a worse comorbidity profile in DLB patients with higher occurrence of depression, stroke and migraine compared with the AD group. Deeper knowledge about the underlying mechanisms of these

  10. Vascular Health Assessment of The Hypertensive Patients (VASOTENS) Registry: Study Protocol of an International, Web-Based Telemonitoring Registry for Ambulatory Blood Pressure and Arterial Stiffness

    PubMed Central

    Parati, Gianfranco; Avolio, Alberto; Rogoza, Anatoly N; Kotovskaya, Yulia V; Mulè, Giuseppe; Muiesan, Maria Lorenza; Orlova, Iana A; Grigoricheva, Elena A; Cardona Muñoz, Ernesto; Zelveian, Parounak H; Pereira, Telmo; Peixoto Maldonado, João Manuel

    2016-01-01

    Background Hypertension guidelines recommend ambulatory blood pressure (ABP), central aortic pressure (CAP), and pulse wave velocity (PWV) as parameters for estimating blood pressure (BP) control and vascular impairment. Recent advances in technology have enabled devices to combine non-invasive estimation of these parameters over the 24-hour ABP monitoring. However, currently there is limited evidence on the usefulness of such an approach for routine hypertension management. Objective We recently launched an investigator-initiated, international, multicenter, observational, prospective study, the Vascular health Assessment Of The Hypertensive patients (VASOTENS) Registry, aimed at (1) evaluating non-invasive 24-hour ABP and arterial stiffness estimates (through 24-hour pulse wave analysis, PWA) in hypertensive subjects undergoing ambulatory blood pressure monitoring (ABPM) for clinical reasons; (2) assessing the changes in estimates following treatment; (3) weighing the impact of 24-hour PWA on target organ damage and cardiovascular prognosis; (4) assessing the relationship between arterial stiffness, BP absolute mean level and variability, and prognosis; and (5) validating the use of a 24-hour PWA electronic health (e-health) solution for hypertension screening. Methods Approximately 2000 subjects, referred to 20 hypertension clinics for routine diagnostic evaluation and follow-up of hypertension of any severity or stage, will be recruited. Data collection will include ABPM, performed with a device allowing simultaneous non-invasive assessment of 24-hour CAP and arterial stiffness (BPLab), and clinical data (including cardiovascular outcomes). As recommended by current guidelines, each patient will be followed-up with visits occurring at regular intervals (ideally every 6 months, and not less than once a year depending on disease severity). A Web-based telemedicine platform (THOLOMEUS) will be used for data collection. The use of the telemedicine system will allow

  11. [Computerization and the importance of information in health system, as in health care resources registry].

    PubMed

    Troselj, Mario; Fanton, Davor

    2005-01-01

    The possibilities of creating a health care resources registry and its operating in Croatia as well as the importance of information in health system are described. At the Croatian Institute of Public Health, monitoring of human resources is performed through the national Health Workers Registry. It also covers basic data on all health units, bed capacities of health facilities included. The initiated health care computerization has urged the idea of forming one more database on physical resources, i.e. on registered medical devices and equipment, more complete. Linking these databases on health resources would produce a single Health Care Resources Registry. The concept views Health Care Resources Registry as part of the overall health information system with centralized information on the health system. The planned development of segments of a single health information system is based on the implementation of the accepted international standards and common network services. Network services that are based on verified Internet technologies are used within a safe, reliable and closed health computer network, which makes up the health intranet (WAN--Wide Area Network). The resource registry is a software solution based on the relational database that monitors history, thus permitting the data collected over a longer period to be analyzed. Such a solution assumes the existence of a directory service, which would replace the current independent software for the Health Workers Registry. In the Health Care Resources Registry, the basic data set encompasses data objects and attributes from the directory service. The directory service is compatible with the LDAP protocol (Lightweight Directory Access Protocol), providing services uniformly to the current records on human and physical resources. Through the storage of attributes defined according to the HL7 (Health Level Seven) standard, directory service is accessible to all applications of the health information system

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

    PubMed

    Lim, G C C; Azura, D

    2008-09-01

    Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients. PMID:19230247

  13. Meeting the Privacy Requirements for the Development of a Multi-Centre Patient Registry in Canada: The Rick Hansen Spinal Cord Injury Registry

    PubMed Central

    Noonan, Vanessa K.; Thorogood, Nancy P.; Joshi, Phalgun B.; Fehlings, Michael G.; Craven, B. Catharine; Linassi, Gary; Fourney, Daryl R.; Kwon, Brian K.; Bailey, Christopher S.; Tsai, Eve C.; Drew, Brian M.; Ahn, Henry; Tsui, Deborah; Dvorak, Marcel F.

    2013-01-01

    Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives. PMID:23968640

  14. Towards better implementation of cancer screening in Europe through improved monitoring and evaluation and greater engagement of cancer registries.

    PubMed

    Anttila, Ahti; Lönnberg, Stefan; Ponti, Antonio; Suonio, Eero; Villain, Patricia; Coebergh, Jan Willem; von Karsa, Lawrence

    2015-01-01

    Proposals to improve implementation, monitoring and evaluation of breast, cervical and colorectal cancer screening programmes have been developed in a European project involving scientists and professionals experienced in cancer registration (EUROCOURSE). They call for a clear and more active role for cancer registries through better interfaces with cancer screening programmes and adapting data contents of cancer registries for evaluation purposes. Cancer registries are recognised as essential for adequate evaluation of cancer screening programmes, but they are not involved in screening evaluation in several European countries. This is a key barrier to improving the effectiveness of programmes across Europe. The variation in Europe in the implementation of cancer screening offers a unique opportunity to learn from best practices in collaboration between cancer registries and screening programmes. Population-based cancer registries have experience and tools in collecting and analysing relevant data, e.g. for diagnostic and therapeutic determinants of mortality. In order to accelerate improvements in cancer control we argue that cancer registries should take co-responsibility in promoting effective screening evaluation in Europe. Additional investments are vital to further development of infrastructures and activities for screening evaluation and monitoring in the national settings and also at the pan-European level. The EUROCOURSE project also aimed to harmonise implementation of the European quality assurance guidelines for cancer screening programmes across Europe through standardising routine data collection and analysis, and definitions for key performance indicators for screening registers. Data linkage between cancer and screening registers and other repositories of demographic data and cause of death and where available clinical registers is key to implementing the European screening standards and thereby reducing the burden of disease through early detection

  15. Young, male, road traffic victims: a systematic review of the published trauma registry literature from low and middle income countries

    PubMed Central

    Boughton, Oliver; Jones, Gareth G.; Lavy, Christopher B.D.; Grimes, Caris E.

    2015-01-01

    Background: Trauma contributes significantly to the global burden of disease. We analysed published trauma registries to assess the demographics of those most affected in low and middle-income countries (LMICs). Methods: We performed a systematic review of published trauma registry studies according to PRISMA guidelines. We included published full-text articles from trauma registries in low and middle-income countries describing the demographics of trauma registry patients. Articles from military trauma registries, articles using data not principally derived from trauma registry data, articles describing patients of only one demographic (e.g. only paediatric patients), or only one mechanism of injury, trauma registry implementation papers without demographic data, review papers and conference proceedings were excluded. Results: The initial search retrieved 1868 abstracts of which 1324 remained after duplicate removal. After screening the abstracts, 78 full-text articles were scrutinised for their suitability for inclusion. Twenty three papers from 14 countries, including 103,327 patients, were deemed eligible and included for analysis. The median age of trauma victims in these articles was 27 years (IQR 25–29). The median percentage of trauma victims who were male was 75 (IQR 66–84). The median percentage of road traffic injuries (RTIs) as a percentage of total injuries caused by trauma was 46 (IQR 21–71). Conclusions: Young, male, road traffic victims represent a large proportion of the LMIC trauma burden. This information can inform and be used by local and national governments to implement road safety measures and other strategies aimed at reducing the injury rate in young males. PMID:27163066

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

    PubMed Central

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

    2015-01-01

    Background. 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. Materials and Methods. 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. Results. 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 48.0/105 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. Conclusion. 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

  17. Re-using the DataCite Metadata Store as DOI registration proxy and IGSN registry

    NASA Astrophysics Data System (ADS)

    Klump, J.; Ulbricht, D.

    2012-12-01

    Currently a lot of work is done to stimulate the reuse of data. In joint efforts research institutions establish infrastructure to facilitate the publication of scientific datasets. To create a citable reference, these datasets must be tagged with persistent identifiers (DOIs) and described with metadata. As most data in the geosciences are derived from samples, it is crucial to be able to uniquely identify the samples from which a set of data were derived. Incomplete documentation of samples in publications, use of ambiguous sample names are major obstacles for synthesis studies and re-use of data. Access to samples for re-analysis and re-appraisal is limited due to the lack of a central catalogue that allows finding a sample's archiving location. The International Geo Sample Number (IGSN) [1] provides solutions to the questions of unique sample identification and discovery. Use of the IGSN in digital data systems allows building linkages between the digital representation of samples in sample registries, e.g. SESAR [2], and their related data in the literature and in web accessible digital data repositories. DataCite recently decided to publish their metadata store (DataCite MDS) and accompanying software online [3]. The DataCite software allows registration of handles, deposition of metadata in an XML format, it offers a search interface, and is able to disseminate metadata via OAI-PMH. Its, REST interface allows an easy integration into institutional data work flows. For our applications at GFZ Potsdam we modified the DataCite MDS software for reuse it in two different contexts: as the DOIDB web service for data publications and as the IGSN registry web service for the registration of geological samples. The DOIDB acts as a proxy service to the DataCite Metadata Store and uses its REST-Interface for registration of DataCite DOI and associated DOI metadata. Metadata can be deposited in the DataCite or NASA DIF schema. Both schemata can be disseminated via OAI

  18. Characterization of Heterogeneity in Childhood Immunization Coverage in Central Florida Using Immunization Registry Data.

    PubMed

    Thompson, Kimberly M; Logan, Grace E

    2016-07-01

    Despite high vaccine coverage in the United States in general, and in the State of Florida specifically, some children miss scheduled vaccines due to health system failures or vaccine refusal by their parents. Recent experiences with outbreaks in the United States suggest that geographic clustering of un(der)vaccinated populations represent a threat to the elimination status of some vaccine-preventable diseases. Immunization registries continue to expand and play an important role in efforts to track vaccine coverage and use. Using nearly 700,000 de-identified immunization records from the Florida Department of Health immunization information system (Florida SHOTS™) for children born during 2003-2014, we explored heterogeneity and potential clustering of un(der)vaccinated children in six counties in central Florida-Brevard, Lake, Orange, Oseola, Polk, and Seminole-that represent a high-risk area for importation due to family tourist attractions in the area. By zip code, we mapped the population density, the percent of children with religious exemptions, the percent of children on track or overdue for each vaccine series without and with exemptions, and the numbers of children with no recorded dose of each vaccine. Overall, we found some heterogeneity in coverage among the counties and zip codes, but relatively consistent and high coverage. We found that some children with an exemption in the system received the vaccines we analyzed, but exemption represents a clear risk factor for un(der)immunization. We identified many challenges associated with using immunization registry data for spatial analysis and potential opportunities to improve registries to better support future analyses. PMID:26033542

  19. Registry analysis supports different mechanisms for gastroschisis and omphalocele within shared developmental fields.

    PubMed

    Benjamin, Bonna; Wilson, Golder N

    2015-11-01

    Nine thousand two hundred eighty abnormalities associated with 2,943 abdominal wall defects (AWD) encoded from 1999 to 2008 by the Texas Birth Defects Registry (TBDR) were classified and analyzed for mechanism, beginning with 1,831 gastroschisis cases, 774 (41%) with 2,368 associated anomalies (AA) and 814 of omphalocele, 727 (89%) with 4,092 AA. Typical AA profiles for Trisomy 18 (23% of omphalocele cases) and Beckwith-Wiedemann syndrome (15%) validated registry AA descriptors, chromosome disorders surprisingly accounting for 24% of known conditions with gastroschisis followed by expected amniotic band (ADAM) complex (23%) and amyoplasia/arthrogryposis (16%). Separation of known diagnoses, fetal-stillbirth cases, and transitional or secondary AA left 330 cases of gastroschisis with 594 AA (452 major, 142 minor) and 295 cases of omphalocele with 956 AA (683 major, 273 minor). Anomalies suggestive of vascular origin (intestinal atresias, amyoplasia, bands) were more frequent with gastroschisis and those of defective lateral folding (exstrophies, limb-body wall defects) with omphalocele. Most AA favoring omphalocele had parallel frequencies with gastroschisis, whether by system/region-for example, cardiac AA (10% of cases), contractures (4.7%), limb (3.7%), CNS (3.2%) for gastroschisis versus cardiac (35%), contractures (14%), digestive-excretory-trunk-axial (all ∼11%), CNS (9.9%) for omphalocele-or for particular minor/major AA-for example, micrognathia (0.72% versus 3.3%), spina bifida (0.59% versus 3.9%), anal atresia (0.73% versus 6.4%), two-vessel cord (0.22% versus 5.6%). Similar frequencies of many AA reflective of early patterning support common AWD origin within early developmental fields and reinforce the use of large birth defect numbers from suitably qualified registries to define anomaly mechanism as well as prevalence. PMID:26138114

  20. Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data

    PubMed Central

    2016-01-01

    Background The National ALS Registry is made up of two components to capture amyotrophic lateral sclerosis (ALS) cases: national administrative databases (Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) and self-identified cases captured by the Registry’s web portal. This study describes self-reported characteristics of U.S. adults with ALS using the data collected by the National ALS Registry web portal risk factor surveys only from October 19, 2010 through December 31, 2013. Objective To describe findings from the National ALS Registry’s web portal risk factor surveys. Measurements The prevalence of select risk factors among adults with ALS was determined by calculating the frequencies of select risk factors—smoking and alcohol (non, current and former) histories, military service and occupational history, and family history of neurodegenerative diseases such as ALS, Alzheimer’s and/or Parkinson’s. Results Nearly half of survey respondents were ever smokers compared with nearly 41% of adults nationally. Most respondents were ever drinkers which is comparable to national estimates. The majority were light drinkers. Nearly one-quarter of survey respondents were veterans compared with roughly 9% of US adults nationally. Most respondents were retired or disabled. The industries in which respondents were employed for the longest time were Professional and Scientific and Technical Services. When family history of neurodegenerative diseases in first degree relatives was evaluated against our comparison group, the rates of ALS were similar, but were higher for Parkinson’s disease, Alzheimer’s disease and any neurodegenerative diseases. Conclusions The National ALS Registry web portal, to our knowledge, is the largest, most geographically diverse collection of risk factor data about adults living with ALS. Various characteristics were consistent with other published studies on ALS risk factors and will allow

  1. Novel Associations in Disorders of Sex Development: Findings From the I-DSD Registry

    PubMed Central

    Cox, Kathryn; Bryce, Jillian; Jiang, Jipu; Rodie, Martina; Sinnott, Richard; Alkhawari, Mona; Arlt, Wiebke; Audi, Laura; Balsamo, Antonio; Bertelloni, Silvano; Cools, Martine; Darendeliler, Feyza; Drop, Stenvert; Ellaithi, Mona; Guran, Tulay; Hiort, Olaf; Holterhus, Paul-Martin; Hughes, Ieuan; Krone, Nils; Lisa, Lidka; Morel, Yves; Soder, Olle; Wieacker, Peter

    2014-01-01

    Context: The focus of care in disorders of sex development (DSD) is often directed to issues related to sex and gender development. In addition, the molecular etiology remains unclear in the majority of cases. Objective: To report the range of associated conditions identified in the international DSD (I-DSD) Registry. Design, Setting, and Patients: Anonymized data were extracted from the I-DSD Registry for diagnosis, karyotype, sex of rearing, genetic investigations, and associated anomalies. If necessary, clarification was sought from the reporting clinician. Results: Of 649 accessible cases, associated conditions occurred in 168 (26%); 103 (61%) cases had one condition, 31 (18%) had two conditions, 20 (12%) had three conditions, and 14 (8%) had four or more conditions. Karyotypes with most frequently reported associations included 45,X with 6 of 8 affected cases (75%), 45,X/46,XY with 19 of 42 cases (45%), 46,XY with 112 of 460 cases (24%), and 46,XX with 27 of 121 cases (22%). In the 112 cases of 46,XY DSD, the commonest conditions included small for gestational age in 26 (23%), cardiac anomalies in 22 (20%), and central nervous system disorders in 22 (20%), whereas in the 27 cases of 46,XX DSD, skeletal and renal anomalies were commonest at 12 (44%) and 8 (30%), respectively. Of 170 cases of suspected androgen insensitivity syndrome, 19 (11%) had reported anomalies and 9 of these had confirmed androgen receptor mutations. Conclusions: Over a quarter of the cases in the I-DSD Registry have an additional condition. These associations can direct investigators toward novel genetic etiology and also highlight the need for more holistic care of the affected person. PMID:24302751

  2. Antecedents of Neonatal Encephalopathy in the Vermont Oxford Network Encephalopathy Registry

    PubMed Central

    Bingham, Peter; Edwards, Erika M.; Horbar, Jeffrey D.; Kenny, Michael J.; Inder, Terrie; Pfister, Robert H.; Raju, Tonse; Soll, Roger F.

    2012-01-01

    BACKGROUND: Neonatal encephalopathy (NE) is a major predictor of death and long-term neurologic disability, but there are few studies of antecedents of NE. OBJECTIVES: To identify antecedents in a large registry of infants who had NE. METHODS: This was a maternal and infant record review of 4165 singleton neonates, gestational age of ≥36 weeks, meeting criteria for inclusion in the Vermont Oxford Network Neonatal Encephalopathy Registry. RESULTS: Clinically recognized seizures were the most prevalent condition (60%); 49% had a 5-minute Apgar score of ≤3 and 18% had a reduced level of consciousness. An abnormal maternal or fetal condition predated labor in 46%; maternal hypertension (16%) or small for gestational age (16%) were the most frequent risk factors. In 8%, birth defects were identified. The most prevalent birth complication was elevated maternal temperature in labor of ≥37.5°C in 27% of mothers with documented temperatures compared with 2% to 3.2% in controls in population-based studies. Clinical chorioamnionitis, prolonged membrane rupture, and maternal hypothyroidism exceeded rates in published controls. Acute asphyxial indicators were reported in 15% (in 35% if fetal bradycardia included) and inflammatory indicators in 24%. Almost one-half had neither asphyxial nor inflammatory indicators. Although most infants with NE were observably ill since the first minutes of life, only 54% of placentas were submitted for examination. CONCLUSIONS: Clinically recognized asphyxial birth events, indicators of intrauterine exposure to inflammation, fetal growth restriction, and birth defects were each observed in term infants with NE, but much of NE in this large registry remained unexplained. PMID:23071210

  3. Design and Rationale of Gulf locals with Acute Coronary Syndrome Events (Gulf Coast) Registry

    PubMed Central

    Zubaid, Mohammad; Thani, Khalid Bin; Rashed, Wafa; Alsheikh-Ali, Alawi; Alrawahi, Najib; Ridha, Mustafa; Akbar, Mousa; Alenezi, Fahad; Alhamdan, Rashed; Almahmeed, Wael; Ouda, Hussam; Al-Mulla, Arif; Baslaib, Fahad; Shehab, Abdulla; Alnuaimi, Abdulla; Amin, Haitham; Krumholz, Harlan M

    2014-01-01

    Objectives: To describe the risk profile, management and one-year outcomes of patients hospitalized with acute coronary syndrome (ACS) in the Gulf region of the Middle East. Subjects and Methods: The Gulf locals with acute coronary syndrome events (Gulf COAST) registry is a prospective, multinational, longitudinal, observational, cohort-based registry of consecutive citizens, from the Gulf region of the Middle East, admitted from January 2012 to January 2013 to 29 hospitals with a diagnosis of ACS. Data entered online included patient demographics, cardiovascular risk profiles, past medical history, physical findings on admission, in-hospital diagnostic tests and therapeutic management, as well as one year outcomes. Results: 3188 patients were recruited. The mean age was 60.4 ± 12.6years (range: 22-112), 2104 (66%) were males and 1084 (34%) females. The discharge diagnosis was ST-segment elevation myocardial infarction (STEMI) in 741 (23.2%), new-onset left bundle branch block myocardial infarction (LBBBMI) in 30 (0.9%), non-ST-segment elevation myocardial infarction (NSTEMI) in 1486 (46.6%) and unstable angina in 931 (29.2%). At hospital presentation, 2105 (66%), 1779 (55.8%), 1703 (53.4%) and 740 (23.2%) had history of hypertension, dyslipidemia, diabetes mellitus and active smoking, respectively. Conclusion: Patients with ACS in our region are young with very high risk profile. The Gulf COAST registry is an example of successful regional collaboration and will provide information on contemporary management of ACS in the region. PMID:25328551

  4. Novel features of 3q29 deletion syndrome: Results from the 3q29 registry.

    PubMed

    Glassford, Megan R; Rosenfeld, Jill A; Freedman, Alexa A; Zwick, Michael E; Mulle, Jennifer G

    2016-04-01

    3q29 deletion syndrome is caused by a recurrent, typically de novo heterozygous 1.6 Mb deletion, but because incidence of the deletion is rare (1 in 30,000 births) the phenotype is not well described. To characterize the range of phenotypic manifestations associated with 3q29 deletion syndrome, we have developed an online registry (3q29deletion.org) for ascertainment of study subjects and phenotypic data collection via Internet-based survey instruments. We report here on data collected during the first 18 months of registry operation, from 44 patients. This is the largest cohort of 3q29 deletion carriers ever assembled and surveyed in a systematic way. Our data reveal that 28% of registry participants report neuropsychiatric phenotypes, including anxiety disorder, panic attacks, depression, bipolar disorder, and schizophrenia. Other novel findings include a high prevalence (64%) of feeding problems in infancy and reduced weight at birth for 3q29 deletion carriers (average reduction 13.9 oz (394 g), adjusted for gestational age and sex, P = 6.5e-07). We further report on the frequency of heart defects, autism, recurrent ear infections, gastrointestinal phenotypes, and dental phenotypes, among others. We also report on the expected timing of delayed developmental milestones. This is the most comprehensive description of the 3q29 deletion phenotype to date. These results are clinically actionable toward improving patient care for 3q29 deletion carriers, and can guide the expectations of physicians and parents. These data also demonstrate the value of patient-reported outcomes to reveal the full phenotypic spectrum of rare genomic disorders. © 2016 Wiley Periodicals, Inc. PMID:26738761

  5. Towards a Global Service Registry for the World-Wide LHC Computing Grid

    NASA Astrophysics Data System (ADS)

    Field, Laurence; Alandes Pradillo, Maria; Di Girolamo, Alessandro

    2014-06-01

    The World-Wide LHC Computing Grid encompasses a set of heterogeneous information systems; from central portals such as the Open Science Grid's Information Management System and the Grid Operations Centre Database, to the WLCG information system, where the information sources are the Grid services themselves. Providing a consistent view of the information, which involves synchronising all these informations systems, is a challenging activity that has lead the LHC virtual organisations to create their own configuration databases. This experience, whereby each virtual organisation's configuration database interfaces with multiple information systems, has resulted in the duplication of effort, especially relating to the use of manual checks for the handling of inconsistencies. The Global Service Registry aims to address this issue by providing a centralised service that aggregates information from multiple information systems. It shows both information on registered resources (i.e. what should be there) and available resources (i.e. what is there). The main purpose is to simplify the synchronisation of the virtual organisation's own configuration databases, which are used for job submission and data management, through the provision of a single interface for obtaining all the information. By centralising the information, automated consistency and validation checks can be performed to improve the overall quality of information provided. Although internally the GLUE 2.0 information model is used for the purpose of integration, the Global Service Registry in not dependent on any particular information model for ingestion or dissemination. The intention is to allow the virtual organisation's configuration databases to be decoupled from the underlying information systems in a transparent way and hence simplify any possible future migration due to the evolution of those systems. This paper presents the Global Service Registry architecture, its advantages compared to the

  6. United States Transuranium and Uranium Registries (USTUR): De-identified Case Data

    DOE Data Explorer

    The United States Transuranium and Uranium Registries (USTUR) is a research program studying actinide elements deposited within the human body û in persons with measurable, documented exposures to those elements. The Registries are operated by the Washington State University (WSU) College of Pharmacy, with administrative offices and laboratory facilities in Richland, Washington. The Registries are funded by a grant from the United States Department of Energy (DOE) Office of Health Studies. The mission of the USTUR is to study the uptake, translocation and retention (biokinetics) and tissue dosimetry of uranium, plutonium, americium, and other actinides in occupationally exposed humans (workers), over their whole lifetime (from exposure through full lifespan), and to serve as a national and international resource for testing and improving the application of excreta monitoring and other contemporary bioassay data to predict tissue dose rates measured at autopsy. These studies are fundamental to evaluating and improving the reliability of, and confidence in, both prospective and retrospective assessments of tissue doses and risks from intakes of actinide materials through inhalation, ingestion, or contaminated wounds. Narrative, de-identified case summaries can be viewed by case number for whole body donations, partial body donations, and special studies. Possible intakes, health physics data, autopsy and pathology findings, and tissue analysis data are described. Radiochemistry data such as wet weight, ashed weight, and measured activity are reported, along with health physics data such as urine and fecal analysis results. USTUR autopsy cases are coded using the International Classisfication of Diseases (ICD) versions 9 and 10. Pathology data can be searched by these codes and viewed by relation to death and severity. [Taken from http://www.ustur.wsu.edu/AboutUs/overview.html and from http://www.ustur.wsu.edu/Mission/index.html and from http://www.ustur.wsu.edu/DeidentifiedData/database.html

  7. Outcome Measures of an Intracanal, Endoscopic Transforaminal Decompression Technique: Initial Findings from the MIS Prospective Registry

    PubMed Central

    Sclafani, Joseph A.; Raiszadeh, Kamshad; Laich, Dan; Shen, Jian; Bennett, Matthew; Blok, Robert; Liang, Kevin

    2015-01-01

    Background Minimally invasive transforaminal endoscopic procedures can achieve spinal decompression through either direct or indirect techniques. Subtle variations in trajectory of the surgical corridor can dictate access to the pathologic tissue. Two general strategies exist: the intradiscal “inside-out” technique and the extradiscal, intracanal (IC) technique. The IC technique utilizes a more lateral transforaminal approach than the intradiscal technique, which allows for a more direct decompression of the spinal canal. Objective This study is an assessment of IC patient outcome data obtained through analysis of a previously validated MIS Prospective Registry. Methods Post-hoc analysis was performed on the MIS Prospective Registry database containing 1032 patients. A subgroup of patients treated with the endoscopic IC technique was identified. Patient outcome measures after treatment of symptomatic disk herniation and neuroforaminal stenosis were evaluated. Results A total of 86 IC patients were analyzed. Overall, there was significant improvement in employment and walking tolerance as soon as 6 weeks post-op as well as significant one year VAS and ODI score improvement. Subanalysis of IC patients with two distinct primary diagnoses was performed. Group IC-1 (disc herniation) showed improvement in ODI and VAS back and leg outcomes at 1 year post-op. Group IC-2 (foraminal stenosis) showed VAS back and leg score improvement at one year post-op but did not demonstrate significant improvement in overall ODI outcome at any time point. The one year re-operation rate was 2% (1/40) for group IC-1 and 28% (5/18) for group IC-2. Conclusions The initial results of the MIS Registry IC subgroup show a significant clinical improvement when the technique is employed to treat patients with lumbar disc herniation. The treatment of foraminal stenosis can lead to improved short-term clinical outcome but is associated with a high re-operation rate at 1 year post-op. PMID

  8. Novel features of 3q29 deletion syndrome: Results from the 3q29 registry

    PubMed Central

    Glassford, Megan R.; Rosenfeld, Jill A.; Freedman, Alexa A.; Zwick, Michael E.

    2016-01-01

    3q29 deletion syndrome is caused by a recurrent, typically de novo heterozygous 1.6 Mb deletion, but because incidence of the deletion is rare (1 in 30,000 births) the phenotype is not well described. To characterize the range of phenotypic manifestations associated with 3q29 deletion syndrome, we have developed an online registry (3q29deletion.org) for ascertainment of study subjects and phenotypic data collection via Internet‐based survey instruments. We report here on data collected during the first 18 months of registry operation, from 44 patients. This is the largest cohort of 3q29 deletion carriers ever assembled and surveyed in a systematic way. Our data reveal that 28% of registry participants report neuropsychiatric phenotypes, including anxiety disorder, panic attacks, depression, bipolar disorder, and schizophrenia. Other novel findings include a high prevalence (64%) of feeding problems in infancy and reduced weight at birth for 3q29 deletion carriers (average reduction 13.9 oz (394 g), adjusted for gestational age and sex, P = 6.5e‐07). We further report on the frequency of heart defects, autism, recurrent ear infections, gastrointestinal phenotypes, and dental phenotypes, among others. We also report on the expected timing of delayed developmental milestones. This is the most comprehensive description of the 3q29 deletion phenotype to date. These results are clinically actionable toward improving patient care for 3q29 deletion carriers, and can guide the expectations of physicians and parents. These data also demonstrate the value of patient‐reported outcomes to reveal the full phenotypic spectrum of rare genomic disorders. © 2016 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. PMID:26738761

  9. First Report of the International Serial Transverse Enteroplasty Data Registry: Indications, Efficacy, and Complications

    PubMed Central

    Modi, Biren P; Javid, Patrick J; Jaksic, Tom; Piper, Hannah; Langer, Monica; Duggan, Christopher; Kamin, Daniel; Kim, Heung Bae

    2011-01-01

    BACKGROUND Serial transverse enteroplasty (STEP) is a novel surgical therapy for short bowel syndrome and is being used with increasing frequency worldwide. Because no single center is likely to obtain sufficient experience for meaningful analysis, we created the International STEP Data Registry to allow for larger, multicenter patient accrual and followup. This report describes patient characteristics, operative parameters, and early results of STEP in the first 38 patients enrolled in the International STEP Data Registry. STUDY DESIGN After IRB approval, data were entered online through password-protected enrollment and followup forms. Patient and procedural characteristics were analyzed. Pre- and postoperative small bowel length and enteral feeding tolerance were compared with the paired t-test. RESULTS Between September 1, 2004, and April 30, 2006, 19 centers from 3 countries enrolled 38 patients. Median followup from STEP procedure to analysis was 12.6 months (range 0 to 66.9 months). Indications for STEP were short bowel syndrome (SBS, n = 29), bacterial overgrowth (n = 6), and neonatal atresia (n = 3). Mean small intestine length was substantially increased in all groups (68 ± 44 cm versus 115 ± 87 cm, p < 0.0001, n = 27). Notable complications included intraoperative staple line leak (n = 2), bowel obstruction (n = 2), and fluid collection or abscess (n = 3). Late outcomes included progression to transplantation (n = 3) and mortality (n = 3). For the short bowel syndrome cohort, enteral tolerance was notably increased from 31% ± 31% to 67% ± 37% of calories (p < 0.01, n = 21). CONCLUSIONS STEP has been performed at multiple centers with minimal complications and encouraging outcomes. Indications for the procedure have broadened beyond short bowel syndrome to include bacterial overgrowth and neonatal intestinal obstruction with dilated proximal intestine. Continued accrual and followup of patients in the International STEP Data Registry will elucidate

  10. Pregnancy Registries

    MedlinePlus

    ... Español Search FDA Submit search Popular Content Home Food Drugs Medical Devices Radiation-Emitting Products Vaccines, Blood & Biologics Animal & Veterinary Cosmetics Tobacco Products Science & Research Home Science & Research Science and Research Special ...

  11. United States Transuranium and Uranium Registries. Annuary report, February 1, 2004 - June 30, 2005

    SciTech Connect

    Alldredge, J. Richard; Ehrhart, Susan M.; Eliston, James T.; Emmel, Robert R.; Filipy, Ronald E.; James, Anthony C.; Sasser, Lyle B.; Wood, Tanya G.

    2006-05-31

    Three events of significance to the U. S. Transuranium and Uranium Registries (USTUR) occurred during this reporting period: 1. The search for a new Associate Director was successful in that Dr. Anthony C. (Tony) James was appointed to the position, 2. A five-year grant for the operation of the USTUR was approved by the U. S. Department of Energy; the previous grant cycles were for three years, 3. I retired from the USTUR Directorship on July 1, 2005 and Tony James became the new Director.

  12. Study protocol: The back pain outcomes using longitudinal data (BOLD) registry

    PubMed Central

    2012-01-01

    Background Back pain is one of the most important causes of functional limitation, disability, and utilization of health care resources for adults of all ages, but especially among older adults. Despite the high prevalence of back pain in this population, important questions remain unanswered regarding the comparative effectiveness of commonly used diagnostic tests and treatments in the elderly. The overall goal of the Back pain Outcomes using Longitudinal Data (BOLD) project is to establish a rich, sustainable registry to describe the natural history and evaluate prospectively the effectiveness, safety, and cost-effectiveness of interventions for patients 65 and older with back pain. Methods/design BOLD is enrolling 5,000 patients ≥ 65 years old who present to a primary care physician with a new episode of back pain. We are recruiting study participants from three integrated health systems (Kaiser-Permanente Northern California, Henry Ford Health System in Detroit and Harvard Vanguard Medical Associates/ Harvard Pilgrim Health Care in Boston). Registry patients complete validated, standardized measures of pain, back pain-related disability, and health-related quality of life at enrollment and 3, 6 and 12 months later. We also have available for analysis the clinical and administrative data in the participating health systems’ electronic medical records. Using registry data, we will conduct an observational cohort study of early imaging compared to no early imaging among patients with new episodes of back pain. The aims are to: 1) identify predictors of early imaging and; 2) compare pain, functional outcomes, diagnostic testing and treatment utilization of patients who receive early imaging versus patients who do not receive early imaging. In terms of predictors, we will examine patient factors as well as physician factors. Discussion By establishing the BOLD registry, we are creating a resource that contains patient-reported outcome measures as well as

  13. Incidence of primary breast cancer in Iran: Ten-year national cancer registry data report.

    PubMed

    Jazayeri, Seyed Behzad; Saadat, Soheil; Ramezani, Rashid; Kaviani, Ahmad

    2015-08-01

    Breast cancer is the leading type of malignancy and the leading cause of cancer-related deaths in women worldwide. The screening programs and advances in the treatment of patients with breast cancer have led to an increase in overall survival. Cancer registry systems play an important role in providing basic data for research and the monitoring of the cancer status. In this study, the results of the 10-year national cancer registry (NCR) of Iran in breast cancer are reviewed. NCR database records were searched for primary breast cancer records according to ICD-O-3 coding and the cases were reviewed. A total of 52,068 cases were found with the coding of primary breast cancer. Females constituted 97.1% of the cases. Breast cancer was the leading type of cancer in Iranian females, accounting for 24.6% of all cancers. The mean age of the women with breast cancer was 49.6 years (95%CI 49.5-49.6). Most of the cases (95.7%) were registered as having invasive pathologies (behavior code 3). The most common morphology of primary breast cancer was invasive ductal carcinoma (ICD-O 8500/3) followed by invasive lobular carcinoma (ICD-O 8520/3) with relative frequencies of 77.8% and 5.2%, respectively. The average annual crude incidence of primary breast cancer in females was 22.6 (95%CI 22.1-23.1) per 100,000 females, with an age-standardized rate (ASR) of 27.4 (95%CI 22.5-35.9). There were no data on survival, staging or immunohistochemical marker(s) of the breast-cancer-registered cases. The incidence of breast cancer in Iran is lower than in low-middle-income neighboring countries. The NCR data registry of breast cancer is not accurate in monitoring the effect of screening programs or determining the current status of breast cancer in Iran. Screening programs of breast cancer in Iran have failed to enhance the detection of the patients with in situ lesion detection. A quality breast cancer registry and a screening program for breast cancer are both needed. PMID:26070507

  14. Splenectomy Associated Changes in IgM Memory B Cells in an Adult Spleen Registry Cohort

    PubMed Central

    Cameron, Paul U.; Jones, Penelope; Gorniak, Malgorzata; Dunster, Kate; Paul, Eldho; Lewin, Sharon; Woolley, Ian; Spelman, Denis

    2011-01-01

    Asplenic patients have a lifelong risk of overwhelming post-splenectomy infection and have been reported to have low numbers of peripheral blood IgM memory B cells. The clinical value of quantitation of memory B cells as an indicator of splenic abnormality or risk of infection has been unclear. To assess changes in B cell sub-populations after splenectomy we studied patients recruited to a spleen registry (n = 591). A subset of 209 adult asplenic or hyposplenic subjects, and normal controls (n = 140) were tested for IgM memory B cells. We also determined a) changes in IgM memory B cells with time after splenectomy using the cross-sectional data from patients on the registry and b) the kinetics of changes in haematological markers associated with splenectomy(n = 45). Total B cells in splenectomy patients did not differ from controls, but memory B cells, IgM memory B cells and switched B cells were significantly (p<0.001) reduced. The reduction was similar for different indications for splenectomy. Changes of asplenia in routine blood films including presence of Howell-Jolly bodies (HJB), occurred early (median 25 days) and splenectomy associated thrombocytosis and lymphocytosis peaked by 50 days. There was a more gradual decrease in IgM memory B cells reaching a stable level within 6 months after splenectomy. IgM memory B cells as proportion of B cells was the best discriminator between splenectomized patients and normal controls and at the optimal cut-off of 4.53, showed a true positive rate of 95% and false positive rate of 20%. In a survey of 152 registry patients stratified by IgM memory B cells around this cut-off there was no association with minor infections and no registry patients experienced OPSI during the study. Despite significant changes after splenectomy, conventional measures of IgM memory cells have limited clinical utility in this population. PMID:21829713

  15. Addressing the unintended adverse consequences of first-person consent and donor registries.

    PubMed

    Verble, Margaret; Worth, Judy

    2012-03-01

    One of the most common reasons given for the refusal to donate in both the United States and the United Kingdom is that the potential donor, in his lifetime, said he did not want to be a donor. This objection has not always been given by families refusing to donate and appears to be an unintended consequence of donation strategies based on public education, donor registries, and first-person consents. A history of the objection is given, possible meanings are explored, and strategies for dealing with it are suggested. PMID:22489440

  16. British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry

    SciTech Connect

    Uberoi, Raman Tapping, Charles Ross; Chalmers, Nicholas; Allgar, Victoria

    2013-12-15

    Purpose: The British Society of Interventional Radiology (BSIR) Inferior Vena Cava (IVC) Filter Registry was produced to provide an audit of current United Kingdom (UK) practice regarding placement and retrieval of IVC filters to address concerns regarding their safety. Methods: The IVC filter registry is a web-based registry, launched by the BSIR on behalf of its membership in October 2007. This report is based on prospectively collected data from October 2007 to March 2011. This report contains analysis of data on 1,434 IVC filter placements and 400 attempted retrievals performed at 68 UK centers. Data collected included patient demographics, insertion and retrieval data, and patient follow-up. Results: IVC filter use in the majority of patients in the UK follows accepted CIRSE guidelines. Filter placement is usually a low-risk procedure, with a low major complication rate (<0.5 %). Cook Gunther Tulip (560 filters: 39 %) and Celect (359 filters: 25 %) filters constituted the majority of IVC filters inserted, with Bard G2, Recovery filters, Cordis Trapease, and OptEase constituting most of the remainder (445 filters: 31 %). More than 96 % of IVC filters deployed as intended. Operator inexperience (<25 procedure) was significantly associated with complications (p < 0.001). Of the IVC filters initially intended for temporary placement, retrieval was attempted in 78 %. Of these retrieval was technically successful in 83 %. Successful retrieval was significantly reduced for implants left in situ for >9 weeks versus those with a shorter dwell time. New lower limb deep vein thrombosis (DVT) and/or IVC thrombosis was reported in 88 patients following filter placement, there was no significant difference of incidence between filter types. Conclusions: This registry report provides interventional radiologists and clinicians with an improved understanding of the technical aspects of IVC filter placement to help improve practice, and the potential consequences of IVC filter

  17. Measuring the Effect of Improved Medical Facilities and Focused Training on Data Quality and Completeness: An Example from the Gharbiah Population-Based Cancer Registry, Egypt.

    PubMed

    Corley, Brittany; Ramadan, Mohamed; Smith, Brittney L; Seifeldein, Ibrahim A; Hablas, Ahmed; Soliman, Amr S

    2015-01-01

    Cancer rates are increasing in low- and middle- income countries. There are a limited number of populationbased cancer registries in Africa and the Egyptian population-based registry in Gharbiah is one of those registries. This registry has followed the standard international registration process and methods since 1999 and has been included in Cancer Incidence in Five Continents volumes IX and X. This article illustrates the reflection of improving medical care in the geographic region of the registry and focused training on enhancing the registry data. The registry area has seen advancement in medical care and cancer diagnostic facilities during the study period. The focused training included 8 different international training sessions over 8 different years for the registrars, administrators, and directors as well as continuing on-the-job training for other registry personnel. These improvements resulted in an overall 40% increase in nonmicroscopic diagnosis of hepatocellular carcinoma, as well as 20%, 10%, and 10% increases in microscopic diagnosis of pancreatic, brain, and lung cancers, respectively, over 9 years. An overall increase of 5% to 10% in subsite diagnosis was also seen for lung, colon, brain, bladder, and breast cancers for the same 9 years. An increase of 3% in grading was seen for solid tumors while 11% was seen for lymphoma. This study showed that low- and middle- income countries can observe higher data quality for cancer registries with improvement in medical care and focused training. PMID:27028092

  18. [The (German) Center for Cancer Registry Data (ZfKD) at the Robert Koch Institute (RKI) in Berlin].

    PubMed

    Wolf, U; Barnes, B; Bertz, J; Haberland, J; Laudi, A; Stöcker, M; Schönfeld, I; Kraywinkel, K; Kurth, B-M

    2011-11-01

    Cancer represents the second most common cause of death in Germany. The country's federal states operate regional population-based cancer registries that collect and analyze data on cancer patients. This provides an essential basis for describing the cancer burden in the German population. In order to obtain valid and reliable information on cancer incidence at the national level, the Robert Koch Institute (RKI) set up the Federal Cancer Surveillance Unit in 1983 as a central institution for evaluating this cancer registry data. In August 2009, when the Federal Cancer Registry Data Act (BKRG) came into force, the Center for Cancer Registry Data (ZfKD) at the RKI took over the work of the Cancer Surveillance Unit with a broader remit. In the future, it will also regularly publish findings on survival, prevalence, and tumor stage distribution. A newly established record linkage process will help identify multiple submissions from the federal states. Further innovations and new tasks of the ZfKD include expanding an interactive Internet platform and encouraging a more intensive use of cancer registry data for epidemiological research by providing datasets to external scientists. The range of information available to the interested public is also to be expanded. PMID:22015795

  19. Idiopathic pulmonary fibrosis in Sweden: report from the first year of activity of the Swedish IPF-Registry

    PubMed Central

    Ferrara, Giovanni; Carlson, Lisa; Palm, Andreas; Einarsson, Jonas; Olivesten, Cecilia; Sköld, Magnus; for the Swedish Idiopathic Pulmonary Fibrosis Registry Group

    2016-01-01

    Background Idiopathic pulmonary fibrosis (IPF) is an emerging problem in the western world, being related to increasing age and implying significant costs for the diagnosis and management of affected patients. The epidemiology of IPF is not well understood. Methods To allow estimates of the problem and eventually to evaluate quality of the care of IPF patients in Sweden, a national IPF Registry was started in the autumn of 2014. Data on criteria used to diagnose IPF, demographics, lung function, and quality of life (measured with the King's Brief Interstitial Lung Disease Questionnaire, K-BILD) were reported directly to the registry, based at the coordinating centre (Karolinska University Hospital, Stockholm, Sweden) via a web-based platform. Results During the first year, the registry was implemented in 11 (33%) of the 33 respiratory units in the country. Seventy-one patients were registered between October 2014 and October 2015, 50 (70.4%) males and 21 (29.6%) females. Median age was 70 (range 47–86). The mean K-BILD score at the first inclusion in the registry was 54.3+9.5. Conclusions The main features of IPF patients in this first Swedish cohort were consistent with data published in the literature in main multinational randomized controlled trials. The K-BILD questionnaire showed that quality of life of patients with IPF and their perception of the disease are quite poor at the time of inclusion in the registry. PMID:27105945

  20. Developing National Cancer Registration in Developing Countries – Case Study of the Nigerian National System of Cancer Registries

    PubMed Central

    Jedy-Agba, Elima E.; Oga, Emmanuel A.; Odutola, Michael; Abdullahi, Yusuf M.; Popoola, Abiodun; Achara, Peter; Afolayan, Enoch; Banjo, Adekunbiola Aina Fehintola; Ekanem, Ima-Obong; Erinomo, Olagoke; Ezeome, Emmanuel; Igbinoba, Festus; Obiorah, Christopher; Ogunbiyi, Olufemi; Omonisi, Abidemi; Osime, Clement; Ukah, Cornelius; Osinubi, Patience; Hassan, Ramatu; Blattner, William; Dakum, Patrick; Adebamowo, Clement A.

    2015-01-01

    The epidemiological transition in sub-Saharan Africa (SSA) has given rise to a concomitant increase in the incidence of non-communicable diseases including cancers. Worldwide, cancer registries have been shown to be critical for the determination of cancer burden, conduct of research, and in the planning and implementation of cancer control measures. Cancer registration though vital is often neglected in SSA owing to competing demands for resources for healthcare. We report the implementation of a system for representative nation-wide cancer registration in Nigeria – the Nigerian National System of Cancer Registries (NSCR). The NSCR coordinates the activities of cancer registries in Nigeria, strengthens existing registries, establishes new registries, complies and analyses data, and makes these freely available to researchers and policy makers. We highlight the key challenges encountered in implementing this strategy and how they were overcome. This report serves as a guide for other low- and middle-income countries (LMIC) wishing to expand cancer registration coverage in their countries and highlights the training, mentoring, scientific and logistic support, and advocacy that are crucial to sustaining cancer registration programs in LMIC. PMID:26284233

  1. The Registry of the German Competence NETwork on Atrial Fibrillation: patient characteristics and initial management

    PubMed Central

    Nabauer, Michael; Gerth, Andrea; Limbourg, Tobias; Schneider, Steffen; Oeff, Michael; Kirchhof, Paulus; Goette, Andreas; Lewalter, Thorsten; Ravens, Ursula; Meinertz, Thomas; Breithardt, Günter; Steinbeck, Gerhard

    2009-01-01

    Aims The aim of this study was to describe the characteristics of patients with atrial fibrillation (AF) enrolled in the Central Registry of the German Competence NETwork on Atrial Fibrillation (AFNET) and to assess current medical practice in patients treated at various levels of medical care in Germany. Methods and results From February 2004 to March 2006, 9582 ambulatory and hospitalized patients with ECG-documented AF were enrolled by 194 participating study centres from all levels of medical care in Germany. Clinical type of AF was reported as paroxysmal in 2893, persistent in 1873, and permanent in 3134 patients or classified as a first episode in 1035 patients. Predisposing conditions were common and present in 87.6% of the patients. Most patients were symptomatic with AF (75.1%). Rhythm control in persistent AF was provided to 53.4% of the symptomatic patients and to 47.8% of the patients without symptoms. Anticoagulation for stroke prevention was given to 71.4% of the patients considered eligible by applicable guidelines and to 48.4% of patients with low risk where guidelines do not recommend anticoagulation. Conclusion This registry provides insight into current medical care of patients with AF in Germany. The use of oral anticoagulation in eligible patients was among the highest reported, whereas decisions on rate and rhythm control often do not follow current recommendations. PMID:19153087

  2. Polish project of a Sex Offenders Registry - a mental health professionals' perspective.

    PubMed

    Szumski, Filip; Kasparek, Krzysztof; Gierowski, Józef Krzysztof

    2016-01-01

    The paper discusses the governmental draft of the Act on counteracting threats of sexual offences. It assumes the creation of the Registry of Sex Offenders in a version with a limited access and a version available to the public. The registry is supplemented with a publically available map of sexual crime threats, which includes the places of sexual offences and the places of residence of offenders. Criticising the proposed solutions, the authors point out the lack of integration with other interventions conducted in Poland against sex offenders, noncompliance with the recommendations of the most important expert circles in the field, as well as the research results showing the lack of effectiveness of the planned measures to reduce sexual offences. Anumber of negative consequences of making the sex offenders'data available to the public was also highlighted in the form of a clear deterioration of social rehabilitation prognoses, additional stigmatisation, as well as social exclusion of the offenders themselves and the victims of sexual violence. The summary emphasises the need to counteract the problem of sexual offences in a systematic way and the need to diversify the interventions undertaken against the offenders, depending on the level of risk of sexual recidivism. PMID:27556108

  3. The Swedish MS registry – clinical support tool and scientific resource.

    PubMed

    Hillert, J; Stawiarz, L

    2015-01-01

    The Swedish MS registry (SMSreg) is designed to assure quality health care for patients with multiple sclerosis (MS). It has been active since 2001 and web-based since 2004. It runs on government funding only and is used in all Swedish neurology departments. The SMSreg currently includes data on 14,500 of Sweden's estimated 17,500 prevalent patients with MS. One important function of SMSreg, to which participation is voluntary, is to serve as a tool for decision support and to provide an easy overview of the patient information needed at clinical visits. This is its core feature and explains why the majority of Swedish MS specialists contribute data. Another success factor for SMSreg is that entered data can be readily accessed, either through a query function into Excel format or through a set of predesigned tables and diagrams in which parameters can be selected. Recent development includes a portal allowing patients to view a summary of their registered data and to report a set of patient-reported outcomes. SMSreg data have been used in close to 100 published scientific reports. Current projects include an incidence cohort (EIMS), post-marketing cohorts of patients on novel disease-modifying drugs (IMSE), and a prevalence cohort (GEMS). As these studies combine physical sampling and questionnaire data with clinical documentation and possible linkage to other public registries, together they provide an excellent platform for integrated MS research. PMID:26046553

  4. National Hematopoietic Stem Cells Transplant Registry in Poland: Nationwide Internet Reporting System and Results.

    PubMed

    Łęczycka, A; Dudkiewicz, M; Czerwiński, J; Malanowski, P; Żalikowska-Hołoweńko, J; Danielewicz, R

    2016-06-01

    History of hematopoietic stem cell transplantations in Poland begins in early 1980s; the 1st bone marrow allotransplantation was performed in 1983 in the Central Clinical Hospital of the Military Medical Academy in Warsaw. Following years brought the 1st autologous stem cell transplantations. Ten years later, unrelated bone marrow transplantation was performed for the 1st time by the team of the Hematology and Blood and Marrow Transplantation Unit in Katowice. Since then, hematopoietic stem cell transplantation developed to be standard procedure and one of the most important therapies applied in leukemia treatment. The number of allotransplantations in Poland has grown significantly in the past 2 decades, which generated new needs and problems. In 2005, based on a new Transplant Law, a National Transplants Registry was created. Its main role is to collect data (registration of procedures and follow-up data) related to every transplantation case for stem cells and tissues as well as for organs. We present statistics concerning stem cell transplantations performed in Poland, as collected in the National Transplants Registry in the years 2006-2014. There are 18 centers transplanting hematopoietic stem cells in Poland. The total number of hematopoietic stem cell transplantations performed in 2006-2014 was 3,537, with allotransplantations from relatives accounted for 1,491 and from unrelated donors for 2,046. The main indication for allotransplantation in past years was acute leukemia. PMID:27496493

  5. OccIDEAS: An Innovative Tool to Assess Past Asbestos Exposure in the Australian Mesothelioma Registry

    PubMed Central

    Benke, Geza; Sim, Malcolm R; Fritschi, Lin

    2012-01-01

    Malignant mesothelioma is an uncommon but rapidly fatal disease for which the principal aetiological agent is exposure to asbestos. Mesothelioma is of particular significance in Australia where asbestos use was very widespread from the 1950s until the 1980s. Exposure to asbestos includes occupational exposure associated with working with asbestos or in workplaces where asbestos is used and also 'take-home' exposure of family members of asbestos exposed workers. Asbestos exposure may also be non-occupational, occurring as a consequence of using asbestos products in non-occupational contexts and passive exposure is also possible, such as exposure to asbestos products in the built environment or proximity to an environmental source of exposure, for example an asbestos production plant. The extremely long latency period for this disease makes exposure assessment problematic in the context of a mesothelioma registry. OccIDEAS, a recently developed online tool for retrospective exposure assessment, has been adapted for use in the Australian Mesothelioma Registry (AMR) to enable systematic retrospective exposure assessment of consenting cases. Twelve occupational questionnaire modules and one non-occupational module have been developed for the AMR, which form the basis of structured interviews using OccIDEAS, which also stores collected data and provides a framework for generating metrics of exposure. PMID:22953234

  6. Medical surveillance, exposure registries, and epidemiologic research for workers exposed to nanomaterials.

    PubMed

    Trout, Douglas B; Schulte, Paul A

    2010-03-10

    While there is a growing body of information about hazards of nanomaterials, little is known about the risks to workers exposed to them. However, workers are the first people in society that are being exposed to the growing inventory of "nano-enabled" products in commerce. The number of workers involved in the investigation, manufacture, production, and disposal of these types of products is growing. Although toxicologic research is still the highest priority, it is time to actively anticipate the health needs of workers. To date, precautionary risk management approaches have been widely advocated. Now there is a need to initiate an evolving process to identify the issues in medical surveillance, utilization of exposure registries, and the conduct of epidemiologic research. Each of these are related complex endeavors that build on the toxicologic evidence and extent of exposure. There is a need to assess the scientific basis and research needs for determining early functional changes, organ system and disease responses for use in targeted medical surveillance. There is also need for development of criteria for extrapolating toxicological data in biological systems to predict the risk of adverse outcomes in humans. In the meantime, exposure registries may be pivotal in helping societies act in the face of uncertainty in a precautionary manner, but legal, ethical, and logistical issues need resolution. Epidemiologic research will build on these efforts and may ultimately contribute critical definitive rationale for medical screening, risk assessment and management. PMID:20006668

  7. Developing Statistical Models to Assess Transplant Outcomes Using National Registries: The Process in the United States.

    PubMed

    Snyder, Jon J; Salkowski, Nicholas; Kim, S Joseph; Zaun, David; Xiong, Hui; Israni, Ajay K; Kasiske, Bertram L

    2016-02-01

    Created by the US National Organ Transplant Act in 1984, the Scientific Registry of Transplant Recipients (SRTR) is obligated to publicly report data on transplant program and organ procurement organization performance in the United States. These reports include risk-adjusted assessments of graft and patient survival, and programs performing worse or better than expected are identified. The SRTR currently maintains 43 risk adjustment models for assessing posttransplant patient and graft survival and, in collaboration with the SRTR Technical Advisory Committee, has developed and implemented a new systematic process for model evaluation and revision. Patient cohorts for the risk adjustment models are identified, and single-organ and multiorgan transplants are defined, then each risk adjustment model is developed following a prespecified set of steps. Model performance is assessed, the model is refit to a more recent cohort before each evaluation cycle, and then it is applied to the evaluation cohort. The field of solid organ transplantation is unique in the breadth of the standardized data that are collected. These data allow for quality assessment across all transplant providers in the United States. A standardized process of risk model development using data from national registries may enhance the field. PMID:26814440

  8. The Department of Defense's Persian Gulf War registry year 2000: an examination of veterans' health status.

    PubMed

    Stuart, John A; Murray, Kelly M; Ursano, Robert J; Wright, Kathleen M

    2002-02-01

    This study examined the health status of 46,633 Persian Gulf War theater veterans who received full clinical evaluations in the Department of Defense's Gulf War Comprehensive Clinical Evaluation Program (CCEP) as of spring 2000. Clinical data analyzed included demographic information, 15 health symptoms, 19 wartime exposures, and primary and secondary physician-determined medical diagnoses based on International Classification of Diseases, 9th Revision, Clinical Modification, criteria. Findings and discussions are arrayed, by gender, with comparative 1996 data from the Department of Veterans Affairs Health Examination Registry Program. Many veterans reported fewer physical symptoms now than during the time of the Gulf War. Many endorsed symptoms of joint pain, fatigue, weight change, and sleep disturbances. Most reported exposure to diesel fuel and the nerve agent antidote pyridostigmine bromide; far fewer female veterans reported combat involvement. The most frequent primary or secondary diagnosed medical conditions were musculoskeletal/connective tissue diseases, ill-defined conditions, and mental disorders. Female veterans were diagnosed more frequently with mental disorders. Symptom endorsement and diagnosis rates between the CCEP and the Department of Veterans Affairs registry were not dissimilar. Overall, the self-reported general health of veterans with symptoms was much poorer (females had higher rates of "fair to poor" health than males) than that of veterans with no reported symptoms. PMID:11873533

  9. Clinical outcomes of splenectomy in children: report of the splenectomy in congenital hemolytic anemia registry.

    PubMed

    Rice, Henry E; Englum, Brian R; Rothman, Jennifer; Leonard, Sarah; Reiter, Audra; Thornburg, Courtney; Brindle, Mary; Wright, Nicola; Heeney, Matthew M; Smithers, Charles; Brown, Rebeccah L; Kalfa, Theodosia; Langer, Jacob C; Cada, Michaela; Oldham, Keith T; Scott, J Paul; St Peter, Shawn; Sharma, Mukta; Davidoff, Andrew M; Nottage, Kerri; Bernabe, Kathryn; Wilson, David B; Dutta, Sanjeev; Glader, Bertil; Crary, Shelley E; Dassinger, Melvin S; Dunbar, Levette; Islam, Saleem; Kumar, Manjusha; Rescorla, Fred; Bruch, Steve; Campbell, Andrew; Austin, Mary; Sidonio, Robert; Blakely, Martin L

    2015-03-01

    The outcomes of children with congenital hemolytic anemia (CHA) undergoing total splenectomy (TS) or partial splenectomy (PS) remain unclear. In this study, we collected data from 100 children with CHA who underwent TS or PS from 2005 to 2013 at 16 sites in the Splenectomy in Congenital Hemolytic Anemia (SICHA) consortium using a patient registry. We analyzed demographics and baseline clinical status, operative details, and outcomes at 4, 24, and 52 weeks after surgery. Results were summarized as hematologic outcomes, short-term adverse events (AEs) (≤30 days after surgery), and long-term AEs (31-365 days after surgery). For children with hereditary spherocytosis, after surgery there was an increase in hemoglobin (baseline 10.1 ± 1.8 g/dl, 52 week 12.8 ± 1.6 g/dl; mean ± SD), decrease in reticulocyte and bilirubin as well as control of symptoms. Children with sickle cell disease had control of clinical symptoms after surgery, but had no change in hematologic parameters. There was an 11% rate of short-term AEs and 11% rate of long-term AEs. As we accumulate more subjects and longer follow-up, use of a patient registry should enhance our capacity for clinical trials and engage all stakeholders in the decision-making process. PMID:25382665

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

    PubMed

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

    2013-01-01

    Researchers require infrastructures that ensure a maximum of accessibility, stability and reliability to facilitate working with and sharing of research data. Such infrastructures are being increasingly summarized under the term Research Data Repositories (RDR). The project re3data.org-Registry of Research Data Repositories-has begun to index research data repositories in 2012 and offers researchers, funding organizations, libraries and publishers an overview of the heterogeneous research data repository landscape. In July 2013 re3data.org lists 400 research data repositories and counting. 288 of these are described in detail using the re3data.org vocabulary. Information icons help researchers to easily identify an adequate repository for the storage and reuse of their data. This article describes the heterogeneous RDR landscape and presents a typology of institutional, disciplinary, multidisciplinary and project-specific RDR. Further the article outlines the features of re3data.org, and shows how this registry helps to identify appropriate repositories for storage and search of research data. PMID:24223762

  11. Prevalence of congenital limb defects: Data from birth defects registries in three provinces in Southern Thailand.

    PubMed

    Jaruratanasirikul, Somchit; Tangtrakulwanich, Boonsin; Rachatawiriyakul, Pornruedee; Sriplung, Hutcha; Limpitikul, Wannee; Dissaneevate, Pathikan; Khunnarakpong, Nattasit; Tantichantakarun, Pongsak

    2016-09-01

    This is the first population-based study in Thailand on the prevalence of congenital limb defects (CLD). Data were obtained from recently established birth defects registries in three southern Thailand provinces during 2009-2013. Entries in the birth defects registries included live births, stillbirths after 24 weeks gestational age, and terminations of pregnancy following a prenatal diagnosis of fetal anomaly. The total of 186 393 births recorded included 424 CLD cases, giving an average prevalence of 2.27 per 1000 births (95% CI, 2.05-2.49). The most common CLD was talipes equinovarus (44.1%), followed by polydactyly (13.9%) and syndactyly (9.4%). The prevalence significantly increased with maternal age from 1.81 in mothers aged <30 years to 2.75 in mothers 30 to  < 35 years, and to 2.94 in mothers ≥35 years (P = 0.004). Overall 9.4% of the CLDs were syndromic CLD, again with significantly greater percentages in pregnant women aged ≥35 years than the non-syndromic CLD (32.5% vs 17.5% respectively, P = 0.03). In conclusion, the overall prevalence of CLD in the 3 southern Thailand provinces examined was 2.27 per 1000 births, and syndromic CLD was significantly higher in pregnant women aged ≥35 years than younger pregnant women. PMID:27580948

  12. A Global Registry for Scientific Collections: Striking a Balance Between Disciplinary Detail and Interdisciplinary Discoverability

    NASA Astrophysics Data System (ADS)

    Graham, E.; Schindel, D. E.

    2014-12-01

    The Global Registry of Scientific Collections (GRSciColl) is an online information resource developed to gather and disseminate basic information on scientific collections. Building on initiatives started for biological collections, GRSciColl expands this framework to encompass all scientific disciplines including earth and space sciences, anthropology, archaeology, biomedicine, and applied fields such as agriculture and technology. The goals of this registry are to (1) provide a single source of synoptic information about the repositories, their component collections, access and use policies, and staff contact information; and (2) facilitate the assignment of identifiers for repositories and their collections that are globally unique across all disciplines. As digitization efforts continue, the importance of globally unique identifiers is paramount to ensuring interoperability across datasets. Search capabilities and web services will significantly increase the web visibility and accessibility of these collections. Institutional records include categorization by governance (e.g., national, state or local governmental, private non-profit) and by scientific discipline (e.g., earth science, biomedical, agricultural). Collection-level metadata categorize the types of contained specimens/samples and modes of preservation. In selecting the level of granularity for these categories, designers sought a compromise that would capture enough information to be useful in searches and inquiries and would complement the detailed archives in specimen-level databases such (which are increasingly digital) hosted by discipline-specific groups (e.g. SESAR) or the repositories themselves (e.g. KE EMu).

  13. Monitoring vaccine safety using the Vaccine Safety Datalink: utilizing immunization registries for pandemic influenza.

    PubMed

    McCarthy, Natalie L; Gee, Julianne; Weintraub, Eric; Donahue, James G; Nordin, James D; Daley, Matthew F; Naleway, Allison; Henninger, Michelle; Baxter, Roger; Crane, Bradley; Aukes, Laurie; Wagner, Nicole; Fisher, Sarah; Jacobsen, Steven J; Sy, Lina; Baggs, James

    2011-07-12

    Mass vaccination campaigns during which new vaccines may be administered to many millions of people in a short period of time call for timely and accurate post-licensure surveillance to monitor vaccine safety. To address the need for timely H1N1 influenza vaccine safety information during the 2009-2010 H1N1 influenza pandemic, the Vaccine Safety Datalink (VSD) project assessed the feasibility and potential mechanisms for utilizing data from state and local immunization registries to capture vaccinations that would not otherwise be captured by the data systems of the participating VSD managed care organizations (MCOs). Three of the eight VSD sites were able to capture H1N1 immunization data electronically from the state and local registries, and one site was able to capture the immunizations through a paper-based system; however, the remaining four sites encountered various obstacles that prevented capture of such data. Additional work will be required at these sites to overcome the barriers, which included privacy and confidentiality laws, time constraints brought on by the pandemic, as well as data quality concerns. PMID:21596088

  14. Ambulatory blood pressure monitoring in daily clinical practice - the Spanish ABPM Registry experience.

    PubMed

    Gorostidi, Manuel; Banegas, José R; de la Sierra, Alejandro; Vinyoles, Ernest; Segura, Julián; Ruilope, Luis M

    2016-01-01

    Many patients are hypertensive at the medical settings but show normal blood pressure out of the doctor's office, and are classified as white-coat hypertensives. On the other hand, many patients with controlled hypertension at the clinic show ambulatory blood pressure levels above the thresholds considered for an adequate blood pressure control, known as having masked hypertension. Using data from the Spanish Ambulatory Blood Pressure Monitoring Registry (Spanish ABPM Registry), a national program developed to promote the use of the ambulatory technique for hypertension management in daily practice, we have reviewed the main strengths of this approach, that is the ability to detect discrepancies of blood pressure status with respect to office blood pressure measurement, and to better assess accurate rates of hypertension control. White-coat hypertension within patients with elevated office blood pressure, and masked hypertension within office-controlled patients affected one of three patients in each office status. On the other hand, rates of ambulatory blood pressure control (50%) doubled those of office blood pressure control (25%), still remaining half the patients uncontrolled. We think that a systematic use of ambulatory blood pressure monitoring, and strategies to improve blood pressure control constitute key priorities in hypertension management. PMID:26541761

  15. The National Neurosurgery Quality and Outcomes Database Qualified Clinical Data Registry: 2015 measure specifications and rationale.

    PubMed

    Parker, Scott L; McGirt, Matthew J; Bekelis, Kimon; Holland, Christopher M; Davies, Jason; Devin, Clinton J; Atkins, Tyler; Knightly, Jack; Groman, Rachel; Zyung, Irene; Asher, Anthony L

    2015-12-01

    Meaningful quality measurement and public reporting have the potential to facilitate targeted outcome improvement, practice-based learning, shared decision making, and effective resource utilization. Recent developments in national quality reporting programs, such as the Centers for Medicare & Medicaid Services Qualified Clinical Data Registry (QCDR) reporting option, have enhanced the ability of specialty groups to develop relevant quality measures of the care they deliver. QCDRs will complete the collection and submission of Physician Quality Reporting System (PQRS) quality measures data on behalf of individual eligible professionals. The National Neurosurgery Quality and Outcomes Database (N(2)QOD) offers 21 non-PQRS measures, initially focused on spine procedures, which are the first specialty-specific measures for neurosurgery. Securing QCDR status for N(2)QOD is a tremendously important accomplishment for our specialty. This program will ensure that data collected through our registries and used for PQRS is meaningful for neurosurgeons, related spine care practitioners, their patients, and other stakeholders. The 2015 N(2)QOD QCDR is further evidence of neurosurgery's commitment to substantively advancing the health care quality paradigm. The following manuscript outlines the measures now approved for use in the 2015 N(2)QOD QCDR. Measure specifications (measure type and descriptions, related measures, if any, as well as relevant National Quality Strategy domain[s]) along with rationale are provided for each measure. PMID:26621418

  16. The Swedish MS registry – clinical support tool and scientific resource

    PubMed Central

    Hillert, J; Stawiarz, L

    2015-01-01

    The Swedish MS registry (SMSreg) is designed to assure quality health care for patients with multiple sclerosis (MS). It has been active since 2001 and web-based since 2004. It runs on government funding only and is used in all Swedish neurology departments. The SMSreg currently includes data on 14,500 of Sweden's estimated 17,500 prevalent patients with MS. One important function of SMSreg, to which participation is voluntary, is to serve as a tool for decision support and to provide an easy overview of the patient information needed at clinical visits. This is its core feature and explains why the majority of Swedish MS specialists contribute data. Another success factor for SMSreg is that entered data can be readily accessed, either through a query function into Excel format or through a set of predesigned tables and diagrams in which parameters can be selected. Recent development includes a portal allowing patients to view a summary of their registered data and to report a set of patient-reported outcomes. SMSreg data have been used in close to 100 published scientific reports. Current projects include an incidence cohort (EIMS), post-marketing cohorts of patients on novel disease-modifying drugs (IMSE), and a prevalence cohort (GEMS). As these studies combine physical sampling and questionnaire data with clinical documentation and possible linkage to other public registries, together they provide an excellent platform for integrated MS research. PMID:26046553

  17. Effects of Renal Denervation Documented in the Austrian National Multicentre Renal Denervation Registry

    PubMed Central

    Lambert, Thomas; Steinwender, Clemens; Weber, Thomas; Suppan, Markus; Brussee, Helmut; Koppelstätter, Christian; Kerschbaum, Julia; Watschinger, Bruno; Hohenstein-Scheibenecker, Katharina; Reindl-Schwaighofer, Roman; Sturmberger, Thomas; Kindslehner, Claudia; Weiss, Thomas Werner; Rohla, Miklos; Gruener, Peter; Maister, Petra; Auer, Johann; Dechant, Cornelia; Sykora, Josef; Krismer, Christoph; Glaser, Stefan; Zweiker, Robert

    2016-01-01

    Renal denervation (RDN) is a new procedure for treatment-resistant hypertensive patients. In order to monitor all procedures undergone in Austria, the Austrian Society of Hypertension established the investigator-initiated Austrian Transcatheter Renal Denervation (TREND) Registry. From April 2011 to September 2014, 407 procedures in 14 Austrian centres were recorded. At baseline, office and mean 24-h ambulatory blood pressure (ABP) were 171/94 and 151/89 mmHg, respectively, and patients were taking a median of 4 antihypertensive medications. Mean 24-h ABP changes after 2–6 weeks, 3, 6 and 12 months were -11/-6, -8/-4, -8/-5 and -10/-6 mmHg (p<0.05 at all measurements), respectively. The periprocedural complication rate was 2.5%. Incidence of long-term complications during follow-up (median 1 year) was 0.5%. Office BP and ABP responses showed only a weak correlation (Pearson coefficient 0.303). Based on the data from the TREND registry, ambulatory blood pressure monitoring in addition to office BP should be used for patient selection as well as for monitoring response to RDN. Furthermore, criteria for optimal patient selection are suggested. PMID:27529426

  18. Designing effective drug and device development programs for hospitalized heart failure: a proposal for pretrial registries.

    PubMed

    Greene, Stephen J; Shah, Ami N; Butler, Javed; Ambrosy, Andrew P; Anker, Stefan D; Chioncel, Ovidiu; Collins, Sean P; Dinh, Wilfried; Dunnmon, Preston M; Fonarow, Gregg C; Lam, Carolyn S P; Mentz, Robert J; Pieske, Burkert; Roessig, Lothar; Rosano, Giuseppe M C; Sato, Naoki; Vaduganathan, Muthiah; Gheorghiade, Mihai

    2014-08-01

    Recent international phase III clinical trials of novel therapies for hospitalized heart failure (HHF) have failed to improve the unacceptably high postdischarge event rate. These large studies have demonstrated notable geographic and site-specific variation in patient profiles and enrollment. Possible contributors to the lack of success in HHF outcome trials include challenges in selecting clinical sites capable of (1) providing adequate numbers of appropriately selected patients and (2) properly executing the study protocol. We propose a "pretrial registry" as a novel tool for improving the efficiency and quality of international HHF trials by focusing on the selection and cultivation of high-quality sites. A pretrial registry may help assess a site's ability to achieve adequate enrollment of the target patient population, integrate protocol requirements into clinical workflow, and accomplish appropriate follow-up. Although such a process would be associated with additional upfront resource investment, this appropriation may be modest in comparison with the downstream costs associated with maintenance of poorly performing sites, failed clinical trials, and the global health and economic burden of HHF. This review is based on discussions between scientists, clinical trialists, and regulatory representatives regarding methods for improving international HHF trials that took place at the United States Food and Drug Administration on January 12th, 2012. PMID:25066552

  19. Open versus Laparoscopic Surgery: Does the Surgical Technique Influence Pain Outcome? Results from an International Registry

    PubMed Central

    Allvin, Renée; Rawal, Narinder; Johanzon, Eva; Bäckström, Ragnar

    2016-01-01

    Postoperative pain management relevant for specific surgical procedures is debated. The importance of evaluating pain with consideration given to type of surgery and the patient's perspective has been emphasized. In this prospective cohort study, we analysed outcome data from 607 patients in the international PAIN OUT registry for assessment and comparison of postoperative pain outcome within the 24 first hours after laparoscopic and open colonic surgery. Patients from the laparoscopic group scored minimum pain at a higher level than the open group (P = 0.012). Apart from minimum pain, no other significant differences in patient reported outcomes were observed. Maximum pain scores >3 were reported from 77% (laparoscopic) and 68% (open) patients (mean ≥ 5 in both groups). Pain interference with mobilization was reported by 87–93% of patients. Both groups scored high levels of patient satisfaction. In the open group, a higher frequency of patients received a combination of general and regional anaesthesia, which had an impact of the minimum pain score. Our results from registry data indicate that surgical technique does not influence the quality of postoperative pain management during the first postoperative day if adequate analgesia is given. PMID:27127649

  20. Related hematopoietic cell donor care: is there a role for unrelated donor registries?

    PubMed

    Anthias, C; van Walraven, S M; Sørensen, B S; de Faveri, G N; Fechter, M; Cornish, J; Bacigalupo, A; Müller, C; Boo, M; Shaw, B E

    2015-05-01

    In almost half of allogeneic hematopoietic progenitor cell (HPC) transplants, a related donor (RD) is used, yet a lack of standardized guidelines means that their care is heterogeneous. Changes to regulatory standards aim to improve uniformity, but adherence to these regulations can prove logistically difficult for the transplant centers (TCs) managing RDs. Discussion has ensued around possible alternative models of related donor care and a session at the European Society for Blood and Marrow Transplantation (EBMT) annual meeting in 2013 debated the question of whether a role exists for unrelated donor registries in the management of 'related' donors. In this overview, we discuss the issues raised at this debate and the pros and cons of donor registry involvement in various aspects of RD management. By examining existing models of related donor care that have been adopted by members of the World Marrow Donor Association (WMDA), we look for ways to enhance and homogenize RD care, while also enabling transplant centers to meet standards required for mandatory accreditation. PMID:25730182

  1. Registry of adolescent and young adult twins in the Tokyo area.

    PubMed

    Shikishima, Chizuru; Ando, Juko; Ono, Yutaka; Toda, Tatsushi; Yoshimura, Kimio

    2006-12-01

    Since established in 1998, the Keio Twin Project (KTP) has been dedicated to investigating genetic and environmental sources contributing to human psychological traits in adolescence and young adulthood. A population-based twin registry was constructed by the KTP through the use of official residential records in the Tokyo area, and to date requests to participate in our research have generated 1040 pairs of twins and triplets of age 14 to 30, forming one of the largest twin registries in Asia. Our comprehensive datasets, obtained through questionnaires, performance tests, and physical measurements, cover a wide range of human traits: personality, psychiatry, mental health, sociality, cognition, and physical index. Demographic variables and environment of upbringing are also sought by twins and by some parents. This extensive information allows us to clarify the genetic and environmental overlap across multiple traits as well as specificities unique to single traits. Adding an evolutionary psychology perspective to the behavior genetics framework is currently being attempted in order to develop a grand theory of human genetics. PMID:17254414

  2. Effects of Renal Denervation Documented in the Austrian National Multicentre Renal Denervation Registry.

    PubMed

    Zweiker, David; Lambert, Thomas; Steinwender, Clemens; Weber, Thomas; Suppan, Markus; Brussee, Helmut; Koppelstätter, Christian; Kerschbaum, Julia; Watschinger, Bruno; Hohenstein-Scheibenecker, Katharina; Reindl-Schwaighofer, Roman; Sturmberger, Thomas; Kindslehner, Claudia; Weiss, Thomas Werner; Rohla, Miklos; Gruener, Peter; Maister, Petra; Auer, Johann; Dechant, Cornelia; Sykora, Josef; Krismer, Christoph; Glaser, Stefan; Zweiker, Robert

    2016-01-01

    Renal denervation (RDN) is a new procedure for treatment-resistant hypertensive patients. In order to monitor all procedures undergone in Austria, the Austrian Society of Hypertension established the investigator-initiated Austrian Transcatheter Renal Denervation (TREND) Registry. From April 2011 to September 2014, 407 procedures in 14 Austrian centres were recorded. At baseline, office and mean 24-h ambulatory blood pressure (ABP) were 171/94 and 151/89 mmHg, respectively, and patients were taking a median of 4 antihypertensive medications. Mean 24-h ABP changes after 2-6 weeks, 3, 6 and 12 months were -11/-6, -8/-4, -8/-5 and -10/-6 mmHg (p<0.05 at all measurements), respectively. The periprocedural complication rate was 2.5%. Incidence of long-term complications during follow-up (median 1 year) was 0.5%. Office BP and ABP responses showed only a weak correlation (Pearson coefficient 0.303). Based on the data from the TREND registry, ambulatory blood pressure monitoring in addition to office BP should be used for patient selection as well as for monitoring response to RDN. Furthermore, criteria for optimal patient selection are suggested. PMID:27529426

  3. The United States Transuranium and Uranium Registries. Revision 1, [Annual] report, October 1, 1990--April 1992

    SciTech Connect

    Kathren, R.L.

    1992-09-01

    This paper describes the history, organization, activities and recent scientific accomplishments of the United States Transuranium and Uranium Registries. Through voluntary donations of tissue obtained at autopsies, the Registries carry out studies of the concentration, distribution and biokinetics of plutonium in occupationally exposed persons. Findings from tissue analyses from more than 200 autopsies include the following: a greater proportion of the americium intake, as compared with plutonium, was found in the skeleton; the half-time of americium in liver is significantly shorter than that of plutonium; the concentration of actinide in the skeleton is inversely proportional to the calcium and ash content of the bone; only a small percentage of the total skeletal deposition of plutonium is found in the marrow, implying a smaller risk from irradiation of the marrow relative to the bone surfaces; estimates of plutonium body burden made from urinalysis typically exceed those made from autopsy data; pathologists were unable to discriminate between a group of uranium workers and persons without known occupational exposure on the basis of evaluation of microscopic kidney slides; the skeleton is an important long term depot for uranium, and that the fractional uptake by both skeleton and kidney may be greater than indicated by current models. These and other findings and current studies are discussed in depth.

  4. Estimation of radiation doses for atomic-bomb survivors in the Hiroshima University Registry

    SciTech Connect

    Hoshi, M.; Matsuura, M.; Hayakawa, N.; Kamada, N.; Ito, C.

    1996-05-01

    The present study presents the Hiroshima University Registry of atomic bomb survivors, of which the total number is about 270,000, and application of absorbed doses. From this registry, we picked up 49,102 survivors and applied organ doses based on the dosimetry system 1986 (DS86), which is named the Atomic Bomb Survivor 1993 Dose (ABS93D). The applied dose data are based on the tables listed in the DS86 final report such as the free-in-air kermas, the house shielding factors, and organ dose factors for the active bone marrow and the breast. Calculations for the 13 other organs provided in DS86 are possible. To obtained the organ doses for each survivor, it is necessary to obtain information concerning (1) place exposed, (2) whether they were shielded or not, and (3) age. ABS93D body transmission factors for active bone marrow for neutrons and gamma rays agreed with DS 86 to within a few percent. Of the survivors studied, 35, 123 of them were used for the relative risk estimation of leukemia mortality, adopting the same method as the Radiation Effects Research Foundation (RERF) for comparison. For the observation period from 1968 to 1989, the analyzed relative risks for leukemia mortality at 1 Gy by shielded kerm and by active bone marrow dose are 2.01 and 2.37, respectively, which are consistent with the RERF results. 11 refs., 1 fig., 3 tabs.

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

    PubMed

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

    2011-01-01

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

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

    PubMed

    McCabe, Linda L; McCabe, Edward R B

    2011-01-01

    As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources. PMID:21501965

  7. Objectives and Design of the Russian Acute Coronary Syndrome Registry (RusACSR).

    PubMed

    Gridnev, Vladimir I; Kiselev, Anton R; Posnenkova, Olga M; Popova, Yulia V; Dmitriev, Viktor A; Prokhorov, Mikhail D; Dovgalevsky, Pavel Ya; Oschepkova, Elena V

    2016-01-01

    The Russian Acute Coronary Syndrome Registry (RusACSR) is a retrospective, continuous, nationwide, Web-based registry of patients with acute coronary syndromes (ACS). The RusACSR is a database that uses a secure Web-based interface for data entry by individual users. Participation in the RusACSR is voluntary. Any clinical center that provides health care to ACS patients can take part in the RusACSR. The RusACSR enrolls ACS patients who have undergone care in Russian hospitals from February 2008 to the present. Key data elements and methods of data analysis in the RusACSR are presented in this article. Up to 2015, 213 clinical centers from 36 regions of Russia had participated in the RusACSR. Currently, the database contains data on more than 250 000 ACS patients who underwent care from 2008 to 2015. Some current problems are highlighted in this article. The RusACSR is a perspective project for different epidemiologic studies in Russian ACS patients. PMID:26695366

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

    PubMed Central

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

    2011-01-01

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

  9. Electronic Public Health Registry of Extensively Drug-Resistant Organisms, Illinois, USA

    PubMed Central

    Lin, Michael Y.; Cheng-Leidig, Robynn; Driscoll, Mary; Tang, Angela S.; Gao, Wei; Runningdeer, Erica; Arwady, M. Allison; Weinstein, Robert A.

    2015-01-01

    In response to clusters of carbapenem-resistant Enterobacteriaceae (CRE) in Illinois, USA, the Illinois Department of Public Health and the Centers for Disease Control and Prevention Chicago Prevention Epicenter launched a statewide Web-based registry designed for bidirectional data exchange among health care facilities. CRE occurrences are entered and searchable in the system, enabling interfacility communication of patient information. For rapid notification of facilities, admission feeds are automated. During the first 12 months of implementation (November 1, 2013–October 31, 2014), 1,557 CRE reports (≈4.3/day) were submitted from 115 acute care hospitals, 5 long-term acute care hospitals, 46 long-term care facilities, and 7 reference laboratories. Guided by a state and local public health task force of infection prevention specialists and microbiologists and a nonprofit informatics entity, Illinois Department of Public Health deployed a statewide registry of extensively drug-resistant organisms. The legal, technical, and collaborative underpinnings of the system enable rapid incorporation of other emerging organisms. PMID:26402744

  10. Outcome of Heart Failure with Preserved Ejection Fraction: A Multicentre Spanish Registry

    PubMed Central

    Castillo, Juan C; Anguita1, Manuel P; Jiménez, Manuel

    2009-01-01

    Background: Studies on clinical features, treatment and prognosis of patients with congestive heart failure (CHF) and preserved left ventricular ejection fraction (LVEF) are few and their results frequently conflicting. Aims: To investigate the characteristics and long term prognosis of patients with CHF and preserved (≥ 45%) LVEF. Methods and Results: We conducted a prospective multicentre study with 4720 patients attended in 62 heart failure clinics from 1999 to 2003 in Spain (BADAPIC registry). LVEF was preserved in 30% patients. Age, female gender, prevalence of atrial fibrillation, hypertension and non-ischaemic cardiopathy were all significantly greater in patients with preserved LVEF. Mean follow-up was 40±12 months. Mortality and other cardiovascular complication rates during follow up were similar in both groups. On multivariate analysis ejection fraction was not an independent predictor for mortality. Survival at one and five years was similar in both groups (79% and 59% for patients with preserved LVEF and 78% and 57% for those with reduced LVEF, respectively). Conclusions: In the BADAPIC registry, a high percentage of heart failure patients had preserved LVEF. Although clinical differences were seen between groups, morbidity and mortality were similar in both groups. PMID:21037850

  11. Adverse events in apheresis: An update of the WAA registry data.

    PubMed

    Mörtzell Henriksson, M; Newman, E; Witt, V; Derfler, K; Leitner, G; Eloot, S; Dhondt, A; Deeren, D; Rock, G; Ptak, J; Blaha, M; Lanska, M; Gasova, Z; Hrdlickova, R; Ramlow, W; Prophet, H; Liumbruno, G; Mori, E; Griskevicius, A; Audzijoniene, J; Vrielink, H; Rombout, S; Aandahl, A; Sikole, A; Tomaz, J; Lalic, K; Mazic, S; Strineholm, V; Brink, B; Berlin, G; Dykes, J; Toss, F; Axelsson, C G; Stegmayr, B; Nilsson, T; Norda, R; Knutson, F; Ramsauer, B; Wahlström, A

    2016-02-01

    Apheresis with different procedures and devices are used for a variety of indications that may have different adverse events (AEs). The aim of this study was to clarify the extent and possible reasons of various side effects based on data from a multinational registry. The WAA-apheresis registry data focus on adverse events in a total of 50846 procedures in 7142 patients (42% women). AEs were graded as mild, moderate (need for medication), severe (interruption due to the AE) or death (due to AE). More AEs occurred during the first procedures versus subsequent (8.4 and 5.5%, respectively). AEs were mild in 2.4% (due to access 54%, device 7%, hypotension 15%, tingling 8%), moderate in 3% (tingling 58%, urticaria 15%, hypotension 10%, nausea 3%), and severe in 0.4% of procedures (syncope/hypotension 32%, urticaria 17%, chills/fever 8%, arrhythmia/asystole 4.5%, nausea/vomiting 4%). Hypotension was most common if albumin was used as the replacement fluid, and urticaria when plasma was used. Arrhythmia occurred to similar extents when using plasma or albumin as replacement. In 64% of procedures with bronchospasm, plasma was part of the replacement fluid used. Severe AEs are rare. Although most reactions are mild and moderate, several side effects may be critical for the patient. We present side effects in relation to the procedures and suggest that safety is increased by regular vital sign measurements, cardiac monitoring and by having emergency equipment nearby. PMID:26776481

  12. Electronic health records and disease registries to support integrated care in a health neighbourhood: an ontology-based methodology

    PubMed Central

    Liaw, Siaw-Teng; Taggart, Jane; Yu, Hairong; Rahimi, Alireza

    2014-01-01

    Disease registries derived from Electronic Health Records (EHRs) are widely used for chronic disease management (CDM). However, unlike national registries which are specialised data collections, they are usually specific to an EHR or organization such as a medical home. We approached registries from the perspective of integrated care in a health neighbourhood, considering data quality issues such as semantic interoperability (consistency), accuracy, completeness and duplication. Our proposition is that a realist ontological approach is required to systematically and accurately identify patients in an EHR or data repository of EHRs, assess intrinsic data quality and fitness for use by members of the multidisciplinary integrated care team. We report on this approach as applied to routinely collected data in an electronic practice based research network in Australia. PMID:25954577

  13. The Use of Registries to Improve Cancer Treatment: A National Database for Patients Treated with Interleukin-2 (IL-2)

    PubMed Central

    Kaufman, Howard L.; Wong, Michael K.; Daniels, Gregory A.; McDermott, David F.; Aung, Sandra; Lowder, James N.; Morse, Michael A.

    2014-01-01

    Registries evaluating un-randomized patients have provided valuable information with respect to a therapy’s utility, treatment practices, and evolution over time. While immunotherapy for cancer has been around for more than three decades, data collection in the form of a registry has not been undertaken. The authors believe that establishing a registry to study HD IL-2 immunotherapy, which has been the only systemic therapy producing long term unmaintained remissions for advanced kidney cancer and melanoma for over 20 years, will be an important resource in understanding the impact of immunotherapy with HD IL-2 in a rapidly changing therapeutic environment. Optimizing administration and improving selection of appropriate patients likely to benefit from HD IL-2 immunotherapy are two of many benefits to be derived from this endeavor. PMID:25562142

  14. Assigning unique identification numbers to new user accounts and groups in a computing environment with multiple registries

    DOEpatents

    DeRobertis, Christopher V.; Lu, Yantian T.

    2010-02-23

    A method, system, and program storage device for creating a new user account or user group with a unique identification number in a computing environment having multiple user registries is provided. In response to receiving a command to create a new user account or user group, an operating system of a clustered computing environment automatically checks multiple registries configured for the operating system to determine whether a candidate identification number for the new user account or user group has been assigned already to one or more existing user accounts or groups, respectively. The operating system automatically assigns the candidate identification number to the new user account or user group created in a target user registry if the checking indicates that the candidate identification number has not been assigned already to any of the existing user accounts or user groups, respectively.

  15. Linkage of a De-identified United States Rheumatoid Arthritis Registry with Administrative Data to Facilitate Comparative Effectiveness Research

    PubMed Central

    Curtis, Jeffrey R; Chen, Lang; Bharat, Aseem; Delzell, Elizabeth; Greenberg, Jeffrey D.; Harrold, Leslie; Kremer, Joel; Setoguchi, Soko; Solomon, Daniel H.; Xie, Fenglong; Yun, Huifeng

    2014-01-01

    Background Linkages between registries and administrative data may provide a valuable resource for comparative effectiveness research. However, personal identifiers that uniquely identify individuals are not always available. We describe methods to link a de-identified arthritis registry and U.S. Medicare data. The linked dataset was also used to evaluate the generalizability of the registry to the U.S. Medicare population. Methods Rheumatoid arthritis (RA) patients participating in the Consortium of Rheumatology Researchers of North America (CORRONA) registry were linked to Medicare data restricted to rheumatology claims or claims for RA. Deterministic linkage was performed using age, sex, provider identification number, and geographic location of the CORRONA site. We then searched for visit dates in Medicare matching visit dates in CORRONA, requiring at least 1 exact matching date. Linkage accuracy was quantified as a positive predictive value (PPV) in a sub-cohort (n=1581) with more precise identifiers. Results CORRONA participants with self-reported Medicare (n=11,001) were initially matched to 30,943 Medicare beneficiaries treated by CORRONA physicians. A total of 8,431 CORRONA participants matched on at least 1 visit; 5,317 matched uniquely on all visits. The number of patients who linked and linkage accuracy (from the subcohort) was high for patients with >2 visits (n=3458, 98% accuracy), exactly 2 visits (n=822, 96% accuracy) visits, and 1 visit (n=1037, 79% accuracy) visit that matched exactly on calendar date. Demographics and comorbidity profiles of registry participants were similar to non-participants, except participants were more likely to use DMARDs and biologics. Conclusion Linkage between a national, de-identified outpatient arthritis registry and Medicare data on multiple non-unique identifiers appears feasible and valid. PMID:24905637

  16. EACVI/HFA Cardiac Oncology Toxicity Registry in breast cancer patients: rationale, study design, and methodology (EACVI/HFA COT Registry)--EURObservational Research Program of the European Society of Cardiology.

    PubMed

    Lancellotti, Patrizio; Anker, Stefan D; Donal, Erwan; Edvardsen, Thor; Popescu, Bogdan A; Farmakis, Dimitrios; Filippatos, Gerasimos; Habib, Gilbert; Maggioni, Aldo P; Jerusalem, Guy; Galderisi, Maurizio

    2015-05-01

    The goal of adjuvant anti-cancer therapies is cure with limited or no side effects, in particular long-term side effects with negative impact on quality of life. In the palliative setting disease control, quality of life and overall survival are important end points. Partly due to improvements in treatment, the population of cancer survivors is large and growing. However, anti-cancer drug-related cardiotoxicity (ADRC) is the leading cause of treatment-associated mortality in cancer survivors. It is one of the most common post-treatment problems among 5- to 10-year survivors of adult cancer. This is particularly true for breast cancer, the most common cancer in women. The EACVI/HFA COT registry is designed for comprehensive data collection and evaluation of the current European practice in terms of diagnosis and management of ADRC in breast cancer patients. The COT registry will be carried out in two continuing phases, the pilot study phase involving 13 countries followed by the long-term registry in which all the 56 ESC countries will be invited to participate. With the COT registry, several critical information will be obtained: on predisposing factors for the development of ADRC, the rate of subclinical LV dysfunction and its transition to overt heart failure, the clinical impact and outcome of ADRC. PMID:25744342

  17. Developing a Communitywide Electronic Health Record Disease Registry in Primary Care Practices: Lessons Learned from the Western New York Beacon Community

    PubMed Central

    Heider, Arvela R.; Maloney, Nancy A.; Satchidanand, Nikhil; Allen, Geoffrey M.; Mueller, Raymond; Gangloff, Steven; Singh, Ranjit

    2014-01-01

    Background and Introduction: Disease registries, as part of electronic health records (EHRs), have shown promise in improving care and outcomes. However, little is known about how best to implement them across communities, especially in communities that are not highly integrated. The Western New York (WNY) primary care community consists largely of independent practices using at least 20 different EHR products. This paper discusses the processes undertaken to develop a communitywide EHR disease registry in WNY, improvements it engendered, barriers overcome, and the lessons learned. Methods: HEALTHeLINK, under the Office of the National Coordinator for Health Information Technology Beacon Community Initiative, reached out to 98 primary care practices in the WNY region to establish EHR-based diabetes registries. Working with practices, community partners, and vendors, registry specifications were created. The registry was piloted with practices using one local vendor’s EHR product and then rolled out to other practices, including five other EHR products. Using identified and de-identified registry datasets, quality benchmarking within and between practices and population health management were undertaken. Findings: From 2011 to 2013, the WNY Beacon Community assisted 98 practices (344 providers) serving over 50,000 adult diabetic patients. A major focus was on EHR registry development across diverse systems, and overcoming the challenges this presented. The Beacon diabetes registry was implemented at 85 of the 98 targeted practices. Of these registries, 65 met the criteria described in a later section for quality benchmarking and population health management purposes. Practices received quarterly benchmark reports summarizing their performance on key diabetes quality metrics and were compared to community practice averages. Practices used their registries for population health management by identifying and targeting patients in need of follow-up or specific

  18. Applying Registry Services to Spaceflight Technologies to Aid in the Assignment of Assigned Numbers to Disparate Systems and Their Technologies to Further Enable Interoperability

    NASA Technical Reports Server (NTRS)

    Bradford, Robert N.; Nichols, Kelvin F.

    2006-01-01

    To date very little effort has been made to provide interoperability between various space agency projects. To effectively get to the Moon and beyond systems must interoperate. To provide interoperability, standardization and registries of various technologies will be required. These registries will be created as they relate to space flight. With the new NASA Moon/Mars initiative a requirement to standardize and control the naming conventions of very disparate systems and technologies are emerging. The need to provide numbering to the many processes, schemas, vehicles, robots, space suits and technologies (e.g. versions), to name a few, in the highly complex Constellation Initiative is imperative. The number of corporations, developer personnel, system interfaces, people interfaces will require standardization and registries on a scale not currently envisioned. It would only take one exception (stove piped system development) to weaken, if not, destroy interoperability. To start, a standardized registry process must be defined that allows many differing engineers, organizations and operators the ability to easily access disparate registry information across numerous technological and scientific disciplines. Once registries are standardized the need to provide registry support in terms of setup and operations, resolution of conflicts between registries and other issues will need to be addressed. Registries should not be confused with repositories. No end user data is "stored" in a registry nor is it a configuration control system. Once a registry standard is created and approved, the technologies that should be registered must be identified and prioritized. In this paper, we will identify and define a registry process that is compatible with the Constellation Initiative and other non related space activities and organizations. We will then identify and define the various technologies that should use a registry to provide interoperability. The first set of

  19. Applying Registry Services to Spaceflight Technologies to Aid in the Assignment of Assigned Numbers to Disparate Systems and their Technologies to Further Enable Interoperability

    NASA Technical Reports Server (NTRS)

    Bradford, Robert N.; Nichols, Kelvin F.; Witherspoon, Keith R.

    2006-01-01

    To date very little effort has been made to provide interoperability between various space agency projects. To effectively get to the Moon and beyond systems must interoperate. To provide interoperability, standardization and registries of various technologies will be required. These registries will be created as they relate to space flight. With the new NASA Moon/Mars initiative, a requirement to standardize and control the naming conventions of very disparate systems and technologies is emerging. The need to provide numbering to the many processes, schemas, vehicles, robots, space suits and technologies (e.g. versions), to name a few, in the highly complex Constellation initiative is imperative. The number of corporations, developer personnel, system interfaces, people interfaces will require standardization and registries on a scale not currently envisioned. It would only take one exception (stove piped system development) to weaken, if not, destroy interoperability. To start, a standardized registry process must be defined that allows many differing engineers, organizations and operators the ability to easily access disparate registry information across numerous technological and scientific disciplines. Once registries are standardized the need to provide registry support in terms of setup and operations, resolution of conflicts between registries and other issues will need to be addressed. Registries should not be confused with repositories. No end user data is "stored" in a registry nor is it a configuration control system. Once a registry standard is created and approved, the technologies that should be registered must be identified and prioritized. In this paper, we will identify and define a registry process that is compatible with the Constellation initiative and other non related space activities and organizations. We will then identify and define the various technologies that should use a registry to provide interoperability. The first set of

  20. Canadian home total parenteral nutrition registry: Preliminary data on the patient population

    PubMed Central

    Raman, Maitreyi; Gramlich, Leah; Whittaker, Scott; Allard, Johane P

    2007-01-01

    BACKGROUND: Long-term administration of home total parenteral nutrition (HTPN) has permitted patients with chronic intestinal failure to survive for prolonged periods of time. However, HTPN is associated with numerous complications, all of which increase morbidity and mortality. In Canada, a comprehensive review of the HTPN population has never been performed. OBJECTIVES: To report on the demographics, current HTPN practice and related complications in the Canadian HTPN population. METHODS: This was a cross-sectional study. Five HTPN programs in Canada participated. Patients’ data were entered by the programs’ TPN team into a Web site-based registry. A unique confidential record was created for each patient. Data were then downloaded into a Microsoft Excel (Microsoft Corp, USA) spreadsheet and imported into SPSS (SPSS Inc, USA) for statistical analysis. RESULTS: One hundred fifty patients were entered into the registry (37.9% men and 62.1% women). The mean (± SD) age was 53.0±14 years and the duration requiring HTPN was 70.1±78.1 months. The mean body mass index before the onset of HTPN was 19.8±5.0 kg/m2. The primary indication for HTPN was short bowel syndrome (60%) secondary to Crohn’s disease (51.1%), followed by mesenteric ischemia (23.9%). Complications: over one year, 62.7% of patients were hospitalized at least once, with 44% of hospitalizations related to TPN. In addition, 28.6% of patients had at least one catheter sepsis (double-lumen more than single-lumen; P=0.025) and 50% had at least one catheter change. Abnormal liver enzymes were documented in 27.4% of patients and metabolic bone disease in 60% of patients, and the mean Karnofsky score was 63. CONCLUSIONS: In the present population sample, the data suggest that HTPN is associated with significant complications and health care utilization. These results support the use of a Canadian HTPN registry to better define the HTPN population, and to monitor complications for quality assurance and

  1. CNS Sites Cooperate to Detect Duplicate Subjects with a Clinical Trial Subject Registry

    PubMed Central

    Wilcox, Charles S.; Gevorgyan, Lilit; Shawkat, Adnan

    2013-01-01

    Objective: To report the results of the first 1,132 subjects in a pilot project where local central nervous system trial sites collaborated in the use of a subject database to identify potential duplicate subjects. Method: Central nervous system sites in Los Angeles and Orange County, California, were contacted by the lead author to seek participation in the project. CTSdatabase, a central nervous system-focused trial subject registry, was utilized to track potential subjects at pre-screen. Subjects signed an institutional review board-approved authorization prior to participation, and site staff entered their identifiers by accessing a website. Sites were prompted to communicate with each other or with the database administrator when a match occurred between a newly entered subject and a subject already in the database. Results: Between October 30, 2011, and August 31, 2012, 1,132 subjects were entered at nine central nervous system sites. Subjects continue to be entered, and more sites are anticipated to begin participation by the time of publication. Initially, there were concerns at a few sites over patient acceptance, financial implications, and/or legal and privacy issues, but these were eventually overcome. Patient acceptance was estimated to be above 95 percent. Duplicate Subjects (those that matched several key identifiers with subjects at different sites) made up 7.78 percent of the sample and Certain Duplicates (matching identifiers with a greater than 1 in 10 million likelihood of occurring by chance in the general population) accounted for 3.45 percent of pre-screens entered into the database. Many of these certain duplicates were not consented for studies because of the information provided by the registry. Conclusion: The use of a clinical trial subject registry and cooperation between central nervous system trial sites can reduce the number of duplicate and professional subjects entering clinical trials. To be fully effective, a trial subject

  2. Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions.

    PubMed

    Couture, Vincent; Dubois, Marie-Andrée; Drouin, Régen; Moutquin, Jean-Marie; Bouffard, Chantal

    2014-03-01

    For the gamete and embryo donation community, it is well recognized that the implementation of a gamete and embryo donor registry (GEDR) represents a good initiative to ensure the best possible health conditions for donor-conceived individuals. Be they national, institutional or independent, GEDR can play a major role in the transmission of health-related genetic and medical information. However, from a bioethical analysis standpoint, GEDR raise many questions regarding the extent of their beneficent nature. Based on the recent Canadian GEDR aborted attempt, this article will focus on bioethical issues and paradoxes that can impact the wellbeing of donor-conceived individuals, half-siblings, donors and parents. On one hand, the implementation of a GEDR can be ethically justified as a beneficent action towards lessening harm associated with the transmission of hereditary disease and increasing the effectiveness of preventive and therapeutic approaches. On the other hand, examined through the concept of nonpaternalistic beneficence, GEDR challenge us to recognize beneficiaries' free agency, as well as the importance to transmit reliable and pertinent information. Ultimately, beyond an individualistic application of the principle of beneficence, socioethics invite us to consider consistency with societal values as a prerequisite for achieving a common good. Because the issue of whether or not to protect the donor's anonymity occupies the forefront of the discussion surrounding gamete and embryo donation, there is less interest in other initiatives, which may be implemented to ensure the best possible medical and psychosocial conditions for donor-conceived individuals. In this article, we propose a bioethical analysis of the use of gamete and embryo donor registries (GEDR) from the angle of the principle of beneficence. More specifically, we will concentrate on the Canadian situation regarding GEDR. We will look at the strengths and pitfalls of this mechanism and

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

    NASA Astrophysics Data System (ADS)

    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

  4. The French Gaucher’s disease registry: clinical characteristics, complications and treatment of 562 patients

    PubMed Central

    2012-01-01

    Background Clinical features, complications and treatments of Gaucher’s disease (GD), a rare autosomal–recessive disorder due to a confirmed lysosomal enzyme (glucocerebrosidase) deficiency, are described. Methods All patients with known GD, living in France, with ≥1 consultations (1980–2010), were included in the French GD registry, yielding the following 4 groups: the entire cohort, with clinical description; and its subgroups: patients with ≥1 follow-up visits, to investigate complications; recently followed (2009–2010) patients; and patients treated during 2009–2010, to examine complications before and during treatment. Data are expressed as medians (range) for continuous variables and numbers (%) for categorical variables. Results Among the 562 registry patients, 265 (49.6%) were females; 454 (85.0%) had type 1, 22 (4.1%) type 2, 37 (6.9%) perinatal–lethal type and 21 (3.9%) type 3. Median ages at first GD symptoms and diagnosis, respectively, were 15 (0–77) and 22 (0–84) years for all types. The first symptom diagnosing GD was splenomegaly and/or thrombocytopenia (37.6% and 26.3%, respectively). Bone-marrow aspiration and/or biopsy yielded the diagnosis for 54.7% of the patients, with enzyme deficiency confirming GD for all patients. Birth incidence rate was estimated at 1/50,000 and prevalence at 1/136,000. For the 378 followed patients, median follow-up was 16.2 (0.1–67.6) years. Major clinical complications were bone events (BE; avascular necrosis, bone infarct or pathological fracture) for 109 patients, splenectomy for 104, and Parkinson’s disease for 14; 38 patients died (neurological complications for 15 type-2 and 3 type-3 patients, GD complications for 11 type-1 and another disease for 9 type-1 patients). Forty-six had monoclonal gammopathy. Among 283 recently followed patients, 36 were untreated and 247 had been treated during 2009–2010; 216 patients received treatment in December 2010 (126 with imiglucerase, 45

  5. Messages from the Malaysian Diabetes Registries on Diabetes Care in Malaysian public healthcare facilities.

    PubMed

    Chew, Boon-How; Lee, Ping-Yein; Cheong, Ai-Theng; Ismail, Mastura; Shariff-Ghazali, Sazlina; Goh, Pik-Pin

    2016-10-01

    A persistent and increasing prevalence of diagnosed and undiagnosed diabetes mellitus has recently been reported in the National Health and Morbidity Survey 2015. This commentary recapitulates the relevant and valuable lessons in the Malaysian national diabetes registries to inform the healthcare stakeholders and policy makers on potential areas of clinical practice improvement and future researches. Under performance of the process measures and sub-optimal control of HbA1c, blood pressure and lipids profile were prevalent (<40% achieved treatment targets). Although these had improved slightly from 2009 to 2012, diabetes co-morbidities (hypertension and dyslipidaemia) and complications had also increased. Prevalence of insulin use had doubled, and lipid lowering agent use had increased about 50% in 2012 compared to 2009. We identified six clinical areas for urgent attention and improvement, and three potential areas for future research. PMID:27459893

  6. Towards a European Registry and Biorepository for Patients with Spinal and Bulbar Muscular Atrophy.

    PubMed

    Pareyson, Davide; Fratta, Pietro; Pradat, Pierre-François; Sorarù, Gianni; Finsterer, Josef; Vissing, John; Jokela, Manu E; Udd, Bjarne; Ludolph, Albert C; Sagnelli, Anna; Weydt, Patrick

    2016-03-01

    Pathomechanisms of spinal and bulbar muscular atrophy (SBMA) have been extensively investigated and are partially understood, but no effective treatment is currently available for this disabling disorder. Its rarity, the slow disease progression, and lack of sensitive-to-change outcome measures render design and conduction of clinical trials a challenging task. Therefore, it is fundamental to strengthen the network of clinical centers interested in SBMA for clinical trial readiness. We propose to create and maintain an International SBMA Registry where as many well-characterized patients as possible can be included, with the following aims: facilitate planning of clinical trials and recruitment of patients, define natural history of the disease, characterize epidemiology, develop standards of care, and inform the community of patients about research progresses and ongoing trials. We also aim at developing harmonized and coordinated biorepositories. The experience obtained during the last years in the field of other neuromuscular disorders and of Huntington disease offers valuable precedents. PMID:26744358

  7. The Michigan State University Twin Registry (MSUTR): genetic, environmental and neurobiological influences on behavior across development.

    PubMed

    Klump, Kelly L; Burt, S Alexandra

    2006-12-01

    The primary aim of the Michigan State University Twin Registry (MSUTR) is to examine developmental differences in genetic, environmental, and neurobiological influences on internalizing and externalizing symptoms, with disordered eating and antisocial behavior representing particular areas of interest. Twin participants span several developmental stages (i.e., childhood, adolescence, and young adulthood). Assessments include comprehensive, multi-informant measures of psychiatric and behavioral phenotypes, buccal swab and salivary DNA samples, assays of adolescent and adult steroid hormone levels (e.g., estradiol, progesterone, testosterone, cortisol), and videotaped parent-child interactions of child and adolescent twin families. To date, we have collected data on over 1000 twins, with additional data collections underway. This article provides an overview of the newly developed MSUTR and describes current and future research directions. PMID:17254439

  8. The Danish Twin Registry: Linking Surveys, National Registers, and Biological Information

    PubMed Central

    Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm; Bødker, Frans L.; Hvidberg, Lars; Petersen, Inge; Nielsen, Morten M. F.; Bingley, Paul; Hjelmborg, Jacob; Tan, Qihua; Holm, Niels V.; Vaupel, James W.; McGue, Matt; Christensen, Kaare

    2013-01-01

    Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008–2011 and included both in-person assessments of 14,000+ twins born 1931–1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions. PMID:23084092

  9. Integration of site-specific health information: Agency for Toxic Substances and Disease Registry health assessments

    SciTech Connect

    Lesperance, A.M.; Siegel, M.R.

    1990-12-01

    The Agency for Toxic Substances and Disease Registry is required to conduct a health assessment of any site that is listed on or proposed for the US Environmental Protection Agency's National Priorities List. Sixteen US Department of Energy (DOE) sites currently fall into this category. Health assessments contain a qualitative description of impacts to public health and the environment from hazardous waste sites, as well as recommendations for actions to mitigate or eliminate risk. Because these recommendations may have major impacts on compliance activities at DOE facilities, the health assessments are an important source of information for the monitoring activities of DOE's Office of Environmental Compliance (OEC). This report provides an overview of the activities involved in preparing the health assessment, its role in environmental management, and its key elements.

  10. Reciprocating living kidney donor generosity: tax credits, health insurance and an outcomes registry.

    PubMed

    Joshi, Shivam; Joshi, Sheela; Kupin, Warren

    2016-02-01

    Kidney transplantation significantly improves patient survival, and is the most cost effective renal replacement option compared with dialysis therapy. Living kidney donors provide a valuable societal gift, but face many formidable disincentive barriers that include not only short- and long-term health risks, but also concerns regarding financial expenditures and health insurance. Other than governmental coverage for their medical evaluation and surgical expenses, donors are often asked to personally bear a significant financial responsibility due to lost work wages and travel expenses. In order to alleviate this economic burden for donors, we advocate for the consideration of tax credits, lifelong health insurance coverage, and an outcomes registry as societal reciprocity to reward their altruistic act of kidney donation. PMID:26798480

  11. Evaluation issues in the Drake Chemical Workers Notification and Health Registry Study.

    PubMed

    Leviton, L C; Chen, H T; Marsh, G M; Talbott, E O

    1993-01-01

    The Drake Chemical Workers' Health Registry combined notification of workers about bladder cancer risk with access to a free program for screening and diagnosis. Evaluation of the project has given rise to several findings and new research questions. Findings in this article illustrate the following evaluation issues: 1) studying the combination of strategies that are most effective and cost effective to notify workers of their disease risks, 2) determining the realistic yield from strategies to gain participation in health screening and other protective services for notified workers, 3) identifying the notification strategies that were most effective for different kinds of participants, 4) using process evaluation to identify key activities for ensuring continued participation of cohort members in screening, and 5) examining the extent to which participants are willing to quit smoking to protect their health. PMID:8422051

  12. Patterns of health care seeking of Gulf War registry members prior to deployment.

    PubMed

    Miller, Richard N; Costigan, Daniel J; Young, Heather A; Kang, Han K; Dalager, Nancy; Mathes, Robert W; Crawford, Harriet C; Page, William F; Thaul, Susan

    2006-05-01

    Following the Gulf War (GW), large numbers of individuals reported illness that they attributed to exposures encountered during the GW deployment. In response, the Department of Veterans Affairs and the Department of Defense established programs and registries for the evaluation and documentation of GW-related illness. We obtained registrants' medical records, which contained information on outpatient encounters during the 1-year period before their GW deployment, to determine whether registrants with multisymptom illness (cases) have patterns of predeployment health care seeking that are different from those of well registrants (controls). We found that subjects had significantly more predeployment outpatient visits than controls, but this varied by type of visit. Although the number of certain types of predeployment outpatient visits is significantly associated with subsequent multisymptom illness, these associations will have limited predictive value. These findings increase our understanding of multisymptom illness, especially its chronic nature, and justify doing additional studies. PMID:16761884

  13. Shortcomings of the National Joint Registry: a survey of consultants' views.

    PubMed Central

    Philipson, M. R.; Westwood, M. J.; Geoghegan, J. M.; Henry, A. P. J.; Jefferiss, C. D.

    2005-01-01

    INTRODUCTION: The National Joint Registry (NJR) for England and Wales was launched in April 2003. The UK Department of Health (DoH) awarded the contract to run the NJR to Atomic Energy Authority (AEA) Technology in September 2002. The aim was to etablish the views of a large group of orthopaedic consultants on the new NJR. METHODS: A questionnaire was sent by post to 405 orthopaedic consultants in the Midlands and South West. RESULTS: Overwhelming support was found for the idea of a national joint replacement register that is used for peer-run audit. However, there was wide-spread concern about the lack of orthopaedic representation on the steering committee. The majority of surgeons have concerns about the possible use of NJR data for the production of league tables. PMID:15826420

  14. A new data management system for the French National Registry of human alveolar echinococcosis cases.

    PubMed

    Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

    2014-01-01

    Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. PMID:25526544

  15. A new data management system for the French National Registry of human alveolar echinococcosis cases

    PubMed Central

    Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

    2014-01-01

    Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. PMID:25526544

  16. Reciprocating living kidney donor generosity: tax credits, health insurance and an outcomes registry

    PubMed Central

    Joshi, Shivam; Joshi, Sheela; Kupin, Warren

    2016-01-01

    Kidney transplantation significantly improves patient survival, and is the most cost effective renal replacement option compared with dialysis therapy. Living kidney donors provide a valuable societal gift, but face many formidable disincentive barriers that include not only short- and long-term health risks, but also concerns regarding financial expenditures and health insurance. Other than governmental coverage for their medical evaluation and surgical expenses, donors are often asked to personally bear a significant financial responsibility due to lost work wages and travel expenses. In order to alleviate this economic burden for donors, we advocate for the consideration of tax credits, lifelong health insurance coverage, and an outcomes registry as societal reciprocity to reward their altruistic act of kidney donation. PMID:26798480

  17. Umbilical cord blood banking: from personal donation to international public registries to global bioeconomy

    PubMed Central

    Petrini, Carlo

    2014-01-01

    The procedures for collecting voluntarily and freely donated umbilical cord blood (UCB) units and processing them for use in transplants are extremely costly, and the capital flows thus generated form part of an increasingly pervasive global bioeconomy. To place the issue in perspective, this article first examines the different types of UCB biobank, the organization of international registries of public UCB biobanks, the optimal size of national inventories, and the possibility of obtaining commercial products from donated units. The fees generally applied for the acquisition of UCB units for transplantation are then discussed, and some considerations are proposed regarding the social and ethical implications raised by the international network for the importation and exportation of UCB, with a particular emphasis on the globalized bioeconomy of UCB and its commerciality or lack thereof. PMID:24971040

  18. The Danish Twin Registry: linking surveys, national registers, and biological information.

    PubMed

    Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm; Bødker, Frans L; Hvidberg, Lars; Petersen, Inge; Nielsen, Morten M F; Bingley, Paul; Hjelmborg, Jacob; Tan, Qihua; Holm, Niels V; Vaupel, James W; McGue, Matt; Christensen, Kaare

    2013-02-01

    Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008-2011 and included both in-person assessments of 14,000+ twins born 1931-1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions. PMID:23084092

  19. Reported exposures, stressors, and life events among Gulf War Registry veterans.

    PubMed

    Boyd, Kendal C; Hallman, William K; Wartenberg, Daniel; Fiedler, Nancy; Brewer, Noel T; Kipen, Howard M

    2003-12-01

    We investigated the association of 15 exposures, 10 stressors, and 18 life events with illness symptoms reported by 978 veterans who believe they suffer from Gulf War-related illnesses. A mail survey was completed by veterans (60% response rate) from the Gulf War Health Registry. Variables most associated with high symptom group membership were reported chemical/biologic warfare (CBW), concerns with infection and faulty equipment, feelings of mistrust in the military, and disability leading to work stoppage within 2 years after the war. These data suggest that belief in CBW exposure, and the experience of war stress and serious negative life events after the war, are important concomitants of Gulf War illness. Models seeking to explain Gulf War symptoms need to incorporate a range of exposure and psychosocial factors to fully account for important influences. PMID:14665810

  20. EMAS statement: benign accountability or wishful thinking? Insights from the Greek EMAS registry.

    PubMed

    Skouloudis, Antonis; Jones, Keith; Sfakianaki, Eleni; Lazoudi, Eugenia; Evangelinos, Konstantinos

    2013-10-15

    Do organizations certified under the Eco-Management and Audit Scheme (EMAS) effectively discharge their environmental accountability through their statements? Is the EMAS statement a step forward for the transparency of environmental management and the empowerment of organizational stakeholders' decision-making? Drawing from the Greek EMAS registry we apply an evaluation method for the completeness and materiality of environmental statements. While the latest version of the EMAS Regulation has introduced a set of forward-looking - yet challenging - improvements, the application of the standard should be closely examined. With this in mind, the key objective of this research note is to provide - from a descriptive standpoint - insights on the content of EMAS-based environmental accountability and a basis for future research as well as fruitful policy debate. PMID:23911984