Science.gov

Sample records for abstracts service registry

  1. Process improvement: a multi-registry database abstraction success story.

    PubMed

    Abrich, Victor; Rokey, Roxann; Devadas, Christopher; Uebel, Julie

    2014-01-01

    The St. Joseph Hospital/Marshfield Clinic Cardiac Database Registry submits data to the National Cardiovascular Data Registry (NCDR) and to the Society of Thoracic Surgeons (STS) National Database. Delayed chart abstraction is problematic, since hospital policy prohibits patient care clarifications made to the medical record more than 1 month after hospital discharge. This can also lead to late identification of missed care opportunities and untimely notification to providers. Our institution was 3.5 months behind in retrospective postdischarge case abstraction. A process improvement plan was implemented to shorten this delay to 1 month postdischarge. Daily demand of incoming cases and abstraction capacity were determined for 4 employees. Demand was matched to capacity, with the remaining time allocated to reducing backlog. Daily demand of new cases was 17.1 hours. Daily abstraction capacity was 24 hours, assuming 6 hours of effective daily abstraction time per employee, leaving 7 hours per day for backlogged case abstraction. The predicted time to reach abstraction target was 10 weeks. This was accomplished after 10 weeks, as predicted, leading to a 60% reduction of backlogged cases. The delay of postdischarge chart abstraction was successfully shortened from 3.5 months to 1 month. We intend to maintain same-day abstraction efficiency without reaccumulating substantial backlog.

  2. EPA Facility Registry Service (FRS): NEI

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the National Emissions Inventory (NEI) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  3. EPA Facility Registry Service (FRS): CERCLIS

    EPA Pesticide Factsheets

    This data provides location and attribute information on Facilities regulated under the Comprehensive Environmental Responsibility Compensation and Liability Information System (CERCLIS) for a intranet web feature service . The data provided in this service are obtained from EPA's Facility Registry Service (FRS). The FRS is an integrated source of comprehensive (air, water, and waste) environmental information about facilities, sites or places. This service connects directly to the FRS database to provide this data as a feature service. FRS creates high-quality, accurate, and authoritative facility identification records through rigorous verification and management procedures that incorporate information from program national systems, state master facility records, data collected from EPA's Central Data Exchange registrations and data management personnel. Additional Information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  4. EPA Facility Registry Service (FRS): TRI

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Toxic Release Inventory (TRI) System. TRI is a publicly available EPA database reported annually by certain covered industry groups, as well as federal facilities. It contains information about more than 650 toxic chemicals that are being used, manufactured, treated, transported, or released into the environment, and includes information about waste management and pollution prevention activities. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to TRI facilities once the TRI data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  5. EPA Facility Registry Service (FRS): CAMDBS

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Clean Air Markets Division Business System (CAMDBS). Administered by the EPA Clean Air Markets Division, within the Office of Air and Radiation, CAMDBS supports the implementation of market-based air pollution control programs, including the Acid Rain Program and regional programs designed to reduce the transport of ozone. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to CAMDBS facilities once the CAMDBS data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  6. EPA Facility Registry Service (FRS): RCRA

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of hazardous waste facilities that link to the Resource Conservation and Recovery Act Information System (RCRAInfo). EPA's comprehensive information system in support of the Resource Conservation and Recovery Act (RCRA) of 1976 and the Hazardous and Solid Waste Amendments (HSWA) of 1984, RCRAInfo tracks many types of information about generators, transporters, treaters, storers, and disposers of hazardous waste. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to RCRAInfo hazardous waste facilities once the RCRAInfo data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  7. EPA Facility Registry Service (FRS): OIL

    EPA Pesticide Factsheets

    This dataset contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Oil database. The Oil database contains information on Spill Prevention, Control, and Countermeasure (SPCC) and Facility Response Plan (FRP) subject facilities to prevent and respond to oil spills. FRP facilities are referred to as substantial harm facilities due to the quantities of oil stored and facility characteristics. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to Oil facilities once the Oil data has been integrated into the FRS database. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs.

  8. 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

  9. EPA Facility Registry Service (FRS): ICIS

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Integrated Compliance Information System (ICIS). When complete, ICIS will provide a database that will contain integrated enforcement and compliance information across most of EPA's programs. The vision for ICIS is to replace EPA's independent databases that contain enforcement data with a single repository for that information. Currently, ICIS contains all Federal Administrative and Judicial enforcement actions and a subset of the Permit Compliance System (PCS), which supports the National Pollutant Discharge Elimination System (NPDES). ICIS exchanges non-sensitive enforcement/compliance activities, non-sensitive formal enforcement actions and NPDES information with FRS. This web feature service contains the enforcement/compliance activities and formal enforcement action related facilities; the NPDES facilities are contained in the PCS_NPDES web feature service. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on f

  10. Feedback Form for the ADS Abstract Service

    Science.gov Websites

    ADS Feedback Form for the ADS Abstract Service Please use this form to report bugs or send comments to the ADS Abstract Project. Thank you for your feedback. ❉ Required field Your Name: ❉ Your E

  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. 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.

  13. New Features in the ADS Abstract Service

    NASA Astrophysics Data System (ADS)

    Eichhorn, G.; Accomazzi, A.; Grant, C. S.; Kurtz, M. J.; ReyBacaicoa, V.; Murray, S. S.

    2001-11-01

    The ADS Abstract Service contains over 2.3 million references in four databases: Astronomy/Astrophysics/Planetary Sciences, Instrumentation, Physics/Geophysics, and Preprints. We provide abstracts and articles free to the astronomical community for all major and many smaller astronomy journals, PhD theses, conference proceedings, and technical reports. These four databases can be queried either separately of jointly. The ADS also has scanned 1.3 million pages in 180,000 articles in the ADS Article Service. This literature archive contains all major Astronomy journals and many smaller journals, as well as conference proceedings, including the abstract books from all the LPSCs back to volume 2. A new feature gives our users the ability to see list of articles that were also read by the readers of a given article. This is a powerful tool to find out what current articles are relevant in a particular field of study. We have recently expanded the citation and reference query capabilities. It allows our users to select papers for which they want to see references or citations and then retrieve these citations/references. Another new capability is the ability to sort a list of articles by their citation count. As usual, users should be reminded that the citations in ADS are incomplete because we do not obtain reference lists from all publishers. In addition, we cannot match all references (e.g. in press, private communications, author errors, some conference papers, etc.). Anyone using the citations for analysis of publishing records should keep this in mind. More work on expanding the citation and reference features is planned over the next year. ADS Home Page http://ads.harvard.edu/

  14. 77 FR 22284 - Notice of Establishment of a Veterinary Services Stakeholder Registry

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-13

    ...] Notice of Establishment of a Veterinary Services Stakeholder Registry AGENCY: Animal and Plant Health Inspection Service, USDA. ACTION: Notice. SUMMARY: This notice announces the availability of a new Veterinary... a Veterinary Services (VS) Stakeholder Registry, an email subscription service for individuals and...

  15. Choosing a Database for Social Work: A Comparison of Social Work Abstracts and Social Service Abstracts

    ERIC Educational Resources Information Center

    Flatley, Robert K.; Lilla, Rick; Widner, Jack

    2007-01-01

    This study compared Social Work Abstracts and Social Services Abstracts databases in terms of indexing, journal coverage, and searches. The authors interviewed editors, analyzed journal coverage, and compared searches. It was determined that the databases complement one another more than compete. The authors conclude with some considerations.

  16. Enhancements to the NASA Astrophysics Science Information and Abstract Service

    NASA Astrophysics Data System (ADS)

    Kurtz, M. J.; Eichhorn, G.; Accomazzi, A.; Grant, C. S.; Murray, S. S.

    1995-05-01

    The NASA Astrophysics Data System Astrophysics Science Information and Abstract Service, the extension of the ADS Abstract Service continues rapidly to expand in both use and capabilities. Each month the service is used by about 4,000 different people, and returns about 1,000,000 pieces of bibliographic information. Among the recent additions to the system are: 1. Whole Text Access. In addition to the ApJ Letters we now have whole text for the ApJ on-line, soon we will have AJ and Rev. Mexicana. Discussions with other publishers are in progress. 2. Space Instrumentation Database. We now provide a second abstract service, covering papers related to space instruments. This is larger than the astronomy and astrophysics database in terms of total abstracts. 3. Reference Books and Historical Journals. We have begun putting the SAO Annals and the HCO Annals on-line. We have put the Handbook of Space Astronomy and Astrophysics by M.V. Zombeck (Cambridge U.P.) on-line. 4. Author Abstracts. We can now include original abstracts in addition to those we get from the NASA STI Abstracts Database. We have included abstracts for A&A in collaboration with the CDS in Strasbourg, and are collaborating with the AAS and the ASP on others. We invite publishers and editors of journals and conference proceedings to include their original abstracts in our service; send inquiries via e-mail to ads@cfa.harvard.edu. 5. Author Notes. We now accept notes and comments from authors of articles in our database. These are arbitrary html files and may contain pointers to other WWW documents, they are listed along with the abstracts, whole text, and data available in the index listing for every reference. The ASIAS is available at: http://adswww.harvard.edu/

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

    EPA Pesticide Factsheets

    This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in the FRS individual feature layers. The layers comprise the FRS major program databases, including:Assessment Cleanup and Redevelopment Exchange System (ACRES) : brownfields sites ; Air Facility System (AFS) : stationary sources of air pollution ; Air Quality System (AQS) : ambient air pollution data from monitoring stations; Bureau of Indian Affairs (BIA) : schools data on Indian land; Base Realignment and Closure (BRAC) facilities; Clean Air Markets Division Business System (CAMDBS) : market-based air pollution control programs; Comprehensive Environmental Response, Compensation, and Liability Information System (CERCLIS) : hazardous waste sites; Integrated Compliance Information System (ICIS) : integrated enforcement and compliance information; National Compliance Database (NCDB) : Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA) and the Toxic Substances Control Act (TSCA); National Pollutant Discharge Elimination System (NPDES) module of ICIS : NPDES surface water permits; Radiation Information Database (RADINFO) : radiation and radioactivity facilities; RACT/BACT/LAER Clearinghouse (RBLC) : best available air pollution technology requirements; Resource Conservation and Recovery Act Information System (RCRAInfo) : tracks generators, transporters, treaters, storers, and disposers of haz

  18. EPA Facility Registry Service (FRS): PCS_NPDES

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the Permit Compliance System (PCS) or the National Pollutant Discharge Elimination System (NPDES) module of the Integrated Compliance Information System (ICIS). PCS tracks NPDES surface water permits issued under the Clean Water Act. This system is being incrementally replaced by the NPDES module of ICIS. Under NPDES, all facilities that discharge pollutants from any point source into waters of the United States are required to obtain a permit. The permit will likely contain limits on what can be discharged, impose monitoring and reporting requirements, and include other provisions to ensure that the discharge does not adversely affect water quality. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. This data set contains the subset of FRS integrated facilities that link to NPDES facilities once the PCS or ICIS-NPDES data has been integrated into the FRS database. Additional information on FRS is available

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

    EPA Pesticide Factsheets

    This web feature service consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in the FRS individual feature layers. The layers comprise the FRS major program databases, including:Assessment Cleanup and Redevelopment Exchange System (ACRES) : brownfields sites ; Air Facility System (AFS) : stationary sources of air pollution ; Air Quality System (AQS) : ambient air pollution data from monitoring stations; Bureau of Indian Affairs (BIA) : schools data on Indian land; Base Realignment and Closure (BRAC) facilities; Clean Air Markets Division Business System (CAMDBS) : market-based air pollution control programs; Comprehensive Environmental Response, Compensation, and Liability Information System (CERCLIS) : hazardous waste sites; Integrated Compliance Information System (ICIS) : integrated enforcement and compliance information; National Compliance Database (NCDB) : Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA) and the Toxic Substances Control Act (TSCA); National Pollutant Discharge Elimination System (NPDES) module of ICIS : NPDES surface water permits; Radiation Information Database (RADINFO) : radiation and radioactivity facilities; RACT/BACT/LAER Clearinghouse (RBLC) : best available air pollution technology requirements; Resource Conservation and Recovery Act Information System (RCRAInfo) : tracks generators, transporters, treaters, storers, and disposers of haz

  20. Journal of Human Services Abstracts. Volume 3, Number 3.

    ERIC Educational Resources Information Center

    Department of Health, Education, and Welfare, Washington, DC. Project Share.

    This index, containing 450 abstracts on human services, is published quarterly to make available a broad range of documents to those responsible for the planning, management, and delivery of human services. The entries are arranged alphabetically by title and indexed by subject matter. Each entry includes the title, order number, source, price,…

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

    EPA Pesticide Factsheets

    This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in the FRS individual feature layers. The layers comprise the FRS major program databases, including:Assessment Cleanup and Redevelopment Exchange System (ACRES) : brownfields sites ; Air Facility System (AFS) : stationary sources of air pollution ; Air Quality System (AQS) : ambient air pollution data from monitoring stations; Bureau of Indian Affairs (BIA) : schools data on Indian land; Base Realignment and Closure (BRAC) facilities; Clean Air Markets Division Business System (CAMDBS) : market-based air pollution control programs; Comprehensive Environmental Response, Compensation, and Liability Information System (CERCLIS) : hazardous waste sites; Integrated Compliance Information System (ICIS) : integrated enforcement and compliance information; National Compliance Database (NCDB) : Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA) and the Toxic Substances Control Act (TSCA); National Pollutant Discharge Elimination System (NPDES) module of ICIS : NPDES surface water permits; Radiation Information Database (RADINFO) : radiation and radioactivity facilities; RACT/BACT/LAER Clearinghouse (RBLC) : best available air pollution technology requirements; Resource Conservation and Recovery Act Information System (RCRAInfo) : tracks generators, transporters, treaters, storers, and disposers

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

    EPA Pesticide Factsheets

    This downloadable data package consists of location and facility identification information from EPA's Facility Registry Service (FRS) for all sites that are available in the FRS individual feature layers. The layers comprise the FRS major program databases, including:Assessment Cleanup and Redevelopment Exchange System (ACRES) : brownfields sites ; Air Facility System (AFS) : stationary sources of air pollution ; Air Quality System (AQS) : ambient air pollution data from monitoring stations; Bureau of Indian Affairs (BIA) : schools data on Indian land; Base Realignment and Closure (BRAC) facilities; Clean Air Markets Division Business System (CAMDBS) : market-based air pollution control programs; Comprehensive Environmental Response, Compensation, and Liability Information System (CERCLIS) : hazardous waste sites; Integrated Compliance Information System (ICIS) : integrated enforcement and compliance information; National Compliance Database (NCDB) : Federal Insecticide, Fungicide, and Rodenticide Act (FIFRA) and the Toxic Substances Control Act (TSCA); National Pollutant Discharge Elimination System (NPDES) module of ICIS : NPDES surface water permits; Radiation Information Database (RADINFO) : radiation and radioactivity facilities; RACT/BACT/LAER Clearinghouse (RBLC) : best available air pollution technology requirements; Resource Conservation and Recovery Act Information System (RCRAInfo) : tracks generators, transporters, treaters, storers, and disposers

  3. A Registry for Planetary Data Tools and Services

    NASA Astrophysics Data System (ADS)

    Hardman, S.; Cayanan, M.; Hughes, J. S.; Joyner, R.; Crichton, D.; Law, E.

    2018-04-01

    The PDS Engineering Node has upgraded a prototype Tool Registry developed by the International Planetary Data Alliance to increase the visibility and enhance functionality along with incorporating the registered tools into PDS data search results.

  4. SAO/NASA ADS at SAO: ADS Abstract Service

    Science.gov Websites

    Service provides a gateway to the online Astronomy and Physics literature. You can navigate this content filtering options as well as visualizations. Astronomy and Astrophysics Classic Search, an legacy interface which searches the 2,311,600 records currently in the Astronomy database, including 198,834 abstracts

  5. Abstracts

    ERIC Educational Resources Information Center

    American Biology Teacher, 1976

    1976-01-01

    Presents abstracts of 63 papers to be presented at the 1976 Convention of the National Association of Biology Teachers, October 14-17, 1976, Denver, Colorado. Papers cover a wide range of biology and science education topics with the majority concentrating upon the convention's main program, "Ecosystems: 1776-1976-?". (SL)

  6. New Data in the ADS Abstract and Article Service

    NASA Astrophysics Data System (ADS)

    Eichhorn, G.; Accomazzi, A.; Grant, C. S.; Kurtz, M. J.; Murray, S. S.

    1996-05-01

    In the last few months the data holdings in the ADS have been considerably expanded. In the abstracts databases we have included over 50,000 abstracts from SPIE conference proceedings (provided by SPIE), a complete set of references for lunar and planetary sciences, and abstracts from recent Lunar and Planetary Institute sponsored conferences (both provided by the Lunar and Planetary Institute). We also extended our cooperation with the CDS in Strasbourg, France by providing a link to the list of objects that are in the SIMBAD database for each reference. The ADS article service now holds full-text articles for 20 years of the Astrophysical Journal Letters, the Astronomical Journal, and the Publications of the Astronomical Society of the Pacific, and 5 years of the Astrophysical Journal on-line. The following journals are being processed and some may be on-line for this AAS meeting: Astrophysical Journal (1975-1989), Astronomy and Astrophysics, Proceedings of the Astronomical Society of Australia, Publications of the Astronomical Society of Japan, Revista Mexicana, Bulletin of the Astronomical Society of India, Obs. Reports of Skalnate Pleso, and Baltic Astronomy. We are now working with two scanning companies to speed up the scanning process and hope that by the end of the year we have all of these journals completely on-line for at least the period 1975 - 1995. Usage statistics for Jan - March 1996: Users Queries References Full Abstracts retrieved retrieved ------------------------------------------- 13,823 365,812 7,953,930 309,866

  7. Cooperative Educational Abstracting Service (CEAS). (Abstract Series No. 103-122, March 1972).

    ERIC Educational Resources Information Center

    International Bureau of Education, Geneva (Switzerland).

    This document is a compilation of 20 English-language abstracts concerning various aspects of education in Switzerland, New Zealand, Chile, Poland, Argentina, Pakistan, Malaysia, Thailand, and France. The abstracts are informative in nature, each being approximately 1,500 words in length. They are based on documents submitted by each of the…

  8. Co-operative Educational Abstracting Service (CEAS). [Abstract Series No. 1-4, 1969-1971].

    ERIC Educational Resources Information Center

    International Bureau of Education, Geneva (Switzerland).

    This document is a compilation of 163 English-language abstracts concerning various aspects of education in Australia, Brazil, Bulgaria, Denmark, Finland, France, Hungary, Iceland, India, Israel, Japan, Mexico, Nigeria, Philippines, Thailand, UAR, U.S., USSR, and Yugoslavia. The abstracts are informative in nature and are approximately 1,500 words…

  9. 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

  10. 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

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

    PubMed

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

    2014-01-01

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

  12. 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.

  13. Phoenix: Service Oriented Architecture for Information Management - Abstract Architecture Document

    DTIC Science & Technology

    2011-09-01

    implementation logic and policy if and which Information Brokering and Repository Services the information is going to be forwarded to. These service chains...descriptions are going to be retrieved. Raised Exceptions: • Exception getConsumers(sessionTrack : SessionTrack, information : Information...that exetnd the usefullness of the IM system as a whole. • Client • Event Notification • Filter • Information Discovery • Security • Service

  14. 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

  15. 40 CFR 799.5025 - Testing consent orders for mixtures without Chemical Abstracts Service Registry Numbers.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... Required test FR citation Di(heptyl, nonyl, undecyl) phthalate (D711P) as a mixture of the following six substances: (1) diheptyl phthalate (branched and linear isomers), CAS No. 68515-44-6 Environmental effects. January 9, 1989. (2) dinonyl phthalate (branched and linear isomers), CAS No. 68515-45-7 ......do Do. (3...

  16. 40 CFR 799.5025 - Testing consent orders for mixtures without Chemical Abstracts Service Registry Numbers.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... Required test FR citation Di(heptyl, nonyl, undecyl) phthalate (D711P) as a mixture of the following six substances: (1) diheptyl phthalate (branched and linear isomers), CAS No. 68515-44-6 Environmental effects. January 9, 1989. (2) dinonyl phthalate (branched and linear isomers), CAS No. 68515-45-7 ......do Do. (3...

  17. 40 CFR 799.5025 - Testing consent orders for mixtures without Chemical Abstracts Service Registry Numbers.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... Required test FR citation Di(heptyl, nonyl, undecyl) phthalate (D711P) as a mixture of the following six substances: (1) diheptyl phthalate (branched and linear isomers), CAS No. 68515-44-6 Environmental effects. January 9, 1989. (2) dinonyl phthalate (branched and linear isomers), CAS No. 68515-45-7 ......do Do. (3...

  18. 40 CFR 799.5025 - Testing consent orders for mixtures without Chemical Abstracts Service Registry Numbers.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... Required test FR citation Di(heptyl, nonyl, undecyl) phthalate (D711P) as a mixture of the following six substances: (1) diheptyl phthalate (branched and linear isomers), CAS No. 68515-44-6 Environmental effects. January 9, 1989. (2) dinonyl phthalate (branched and linear isomers), CAS No. 68515-45-7 ......do Do. (3...

  19. 40 CFR 799.5025 - Testing consent orders for mixtures without Chemical Abstracts Service Registry Numbers.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ...) Polytetrafluoroethylene, DCN No. 63040000018B ......do Do. Fluorotelomer-based composite substance: (1) For Paper containing three of the following chemical substances as specified in the ECA: (i) Perfluoroalkylethyl...) Perfluoroalkyl acrylate copolymer, ACC 158022 ......do Do. (iii) Perfluoroalkyl methacrylate polymer, EPA...

  20. Spine Tango registry data collection in a conservative spinal service: a feasibility study.

    PubMed

    Morris, Samuel; Booth, James; Hegarty, James

    2016-09-01

    The study reports the feasibility of implementing routine registry data collection and sustaining a high rate of data capture within a secondary care spinal osteopathy service, using the Spine Tango Conservative registry data collection tool (STC) with multiple patient-reported outcome measures (PROMs): Oswestry Disability Index (ODI), Neck Disability Index (NDI), COMI Low Back Conservative, COMI Neck Conservative and EQ-5D-3L. Data collection rates were studied during the implementation of a registry data collection project from October 2011 to June 2015. The primary outcome was completion rate of PROMs and the STC, measured as a percentage of total expected data collection. Descriptive statistics were used to illustrate completion rates by year, age group, sex, region of spinal complaint, baseline ODI or NDI score and number of PROMs required to complete the data set. Data were collected on 349 patients. Overall data collection rates increased from 54.8 % in January-June 2012 to 90.4 % in January-June 2015. The percentage of fully completed data sets was lower in the patient group required to complete 4-5 PROMs at each data collection point (15.4 %) than it was in the patient group required to complete 2-3 PROMs (37.4 %). Other comparisons showed no clear patterns. Our analysis shows that a high rate of data capture can be sustained in a clinical setting using the STC and multiple PROMs. However, increasing the burden of data collection on patients and practitioners was associated with increased data loss. We describe measures taken to reduce data loss in the future and to increase the efficiency of the data collection project.

  1. Use of ebRIM-based CSW with sensor observation services for registry and discovery of remote-sensing observations

    NASA Astrophysics Data System (ADS)

    Chen, Nengcheng; Di, Liping; Yu, Genong; Gong, Jianya; Wei, Yaxing

    2009-02-01

    Recent advances in Sensor Web geospatial data capture, such as high-resolution in satellite imagery and Web-ready data processing and modeling technologies, have led to the generation of large numbers of datasets from real-time or near real-time observations and measurements. Finding which sensor or data complies with criteria such as specific times, locations, and scales has become a bottleneck for Sensor Web-based applications, especially remote-sensing observations. In this paper, an architecture for use of the integration Sensor Observation Service (SOS) with the Open Geospatial Consortium (OGC) Catalogue Service-Web profile (CSW) is put forward. The architecture consists of a distributed geospatial sensor observation service, a geospatial catalogue service based on the ebXML Registry Information Model (ebRIM), SOS search and registry middleware, and a geospatial sensor portal. The SOS search and registry middleware finds the potential SOS, generating data granule information and inserting the records into CSW. The contents and sequence of the services, the available observations, and the metadata of the observations registry are described. A prototype system is designed and implemented using the service middleware technology and a standard interface and protocol. The feasibility and the response time of registry and retrieval of observations are evaluated using a realistic Earth Observing-1 (EO-1) SOS scenario. Extracting information from SOS requires the same execution time as record generation for CSW. The average data retrieval response time in SOS+CSW mode is 17.6% of that of the SOS-alone mode. The proposed architecture has the more advantages of SOS search and observation data retrieval than the existing sensor Web enabled systems.

  2. Using a cardiac arrest registry to measure the quality of emergency medical service care: decade of findings from the Victorian Ambulance Cardiac Arrest Registry.

    PubMed

    Nehme, Ziad; Bernard, Stephen; Cameron, Peter; Bray, Janet E; Meredith, Ian T; Lijovic, Marijana; Smith, Karen

    2015-01-01

    Although the value of clinical registries has been well recognized in developed countries, their use for measuring the quality of emergency medical service care remains relatively unknown. We report the methodology and findings of a statewide emergency medical service surveillance initiative, which is used to measure the quality of systems of care for patients with out-of-hospital cardiac arrest. Between July 1, 2002, and June 30, 2012, data for adult out-of-hospital cardiac arrest cases of presumed cardiac cause occurring in the Australian Southeastern state of Victoria were extracted from the Victorian Ambulance Cardiac Arrest Registry. Regional and temporal trends in bystander cardiopulmonary resuscitation, event survival, and survival to hospital discharge were analyzed using logistic regression and multilevel modeling. A total of 32,097 out-of-hospital cardiac arrest cases were identified, of whom 14,083 (43.9%) received treatment by the emergency medical service. The risk-adjusted odds of receiving bystander cardiopulmonary resuscitation (odds ratio [OR], 2.96; 95% confidence interval, 2.62-3.33), event survival (OR, 1.55; 95% confidence interval, 1.30-1.85), and survival to hospital discharge (OR, 2.81; 95% confidence interval, 2.07-3.82) were significantly improved by 2011 to 2012 compared with baseline. Significant variation in rates of bystander cardiopulmonary resuscitation and survival were observed across regions, with arrests in rural regions less likely to survive to hospital discharge. The median OR for interhospital variability in survival to hospital discharge outcome was 70% (median OR, 1.70). Between 2002 and 2012, there have been significant improvements in bystander cardiopulmonary resuscitation and survival outcome for out-of-hospital cardiac arrest patients in Victoria, Australia. However, regional survival disparities and interhospital variability in outcomes pose significant challenges for future improvements in care. © 2015 American

  3. 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

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

  4. Use of emergency medical services in the second gulf registry of acute coronary events.

    PubMed

    AlHabib, Khalid F; Alfaleh, Hussam; Hersi, Ahmad; Kashour, Tarek; Alsheikh-Ali, Alawi A; Suwaidi, Jassim Al; Sulaiman, Kadhim; Saif, Shukri Al; Almahmeed, Wael; Asaad, Nidal; Amin, Haitham; Al-Motarreb, Ahmed; Thalib, Lukman

    2014-09-01

    Data are scarce regarding emergency medical service (EMS) usage by patients with acute coronary syndrome (ACS) in the Arabian Gulf region. This 9-month in-hospital prospective ACS registry was conducted in Arabian Gulf countries, with 30-day and 1-year follow-up mortality rates. Of 5184 patients with ACS, 1293 (25%) arrived at the hospital by EMS. The EMS group (vs non-EMS) was more likely to be male, have cardiac arrest on presentation, be current or exsmokers, and have moderate or severe left ventricular dysfunction and ST-segment elevation myocardial infarction (STEMI). The EMS group had higher crude mortality rates during hospitalization and after hospital discharge but not after adjustment for clinical factors and treatments. The EMSs are underused in the Arabian Gulf region. Short- and long-term mortality rates in patients with ACS are similar between those who used and did not use EMS. Quality improvement in the EMS infrastructure and establishment of integrated STEMI networks are urgently needed. © The Author(s) 2013.

  5. Full Text Searching and Customization in the NASA ADS Abstract Service

    NASA Technical Reports Server (NTRS)

    Eichhorn, G.; Accomazzi, A.; Grant, C. S.; Kurtz, M. J.; Henneken, E. A.; Thompson, D. M.; Murray, S. S.

    2004-01-01

    The NASA-ADS Abstract Service provides a sophisticated search capability for the literature in Astronomy, Planetary Sciences, Physics/Geophysics, and Space Instrumentation. The ADS is funded by NASA and access to the ADS services is free to anybody worldwide without restrictions. It allows the user to search the literature by author, title, and abstract text. The ADS database contains over 3.6 million references, with 965,000 in the Astronomy/Planetary Sciences database, and 1.6 million in the Physics/Geophysics database. 2/3 of the records have full abstracts, the rest are table of contents entries (titles and author lists only). The coverage for the Astronomy literature is better than 95% from 1975. Before that we cover all major journals and many smaller ones. Most of the journal literature is covered back to volume 1. We now get abstracts on a regular basis from most journals. Over the last year we have entered basically all conference proceedings tables of contents that are available at the Harvard Smithsonian Center for Astrophysics library. This has greatly increased the coverage of conference proceedings in the ADS. The ADS also covers the ArXiv Preprints. We download these preprints every night and index all the preprints. They can be searched either together with the other abstracts or separately. There are currently about 260,000 preprints in that database. In January 2004 we have introduced two new services, full text searching and a personal notification service called "myADS". As all other ADS services, these are free to use for anybody.

  6. Assessing the impacts of water abstractions on river ecosystem services: an eco-hydraulic modelling approach

    SciTech Connect

    Carolli, Mauro, E-mail: mauro.carolli@unitn.it; Geneletti, Davide, E-mail: davide.geneletti@unitn.it; Zolezzi, Guido, E-mail: guido.zolezzi@unitn.it

    The provision of important river ecosystem services (ES) is dependent on the flow regime. This requires methods to assess the impacts on ES caused by interventions on rivers that affect flow regime, such as water abstractions. This study proposes a method to i) quantify the provision of a set of river ES, ii) simulate the effects of water abstraction alternatives that differ in location and abstracted flow, and iii) assess the impact of water abstraction alternatives on the selected ES. The method is based on river modelling science, and integrates spatially distributed hydrological, hydraulic and habitat models at different spatialmore » and temporal scales. The method is applied to the hydropeaked upper Noce River (Northern Italy), which is regulated by hydropower operations. We selected locally relevant river ES: habitat suitability for the adult marble trout, white-water rafting suitability, hydroelectricity production from run-of-river (RoR) plants. Our results quantify the seasonality of river ES response variables and their intrinsic non-linearity, which explains why the same abstracted flow can produce different effects on trout habitat and rafting suitability depending on the morphology of the abstracted reach. An economic valuation of the examined river ES suggests that incomes from RoR hydropower plants are of comparable magnitude to touristic revenue losses related to the decrease in rafting suitability.« less

  7. 40 CFR 799.5000 - Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... Environmental Releases Report November 18, 1994. 112-35-6 Triethylene glycol monomethyl ether Health effects... Health effects November 23, 1993. 994-05-8 Tertiary-amyl methyl ether Health effects March 21, 1995. 1634-04-4 Methyl tert-butyl ether Health effects March 31, 1988. 2461-18-9 Lauryl glycidyl ether 1 Health...

  8. 40 CFR 799.5000 - Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ...-64-1 Acetone Health effects January 23, 1995. 71-55-6 1,1,1-Trichloroethane Health effects August 23, 1989. 78-83-1 Isobutyl alcohol Health effects January 23, 1995. 79-10-7 Acrylic Acid Health effects... Health effects September 23, 1991. Chemical fate September 23, 1991. 106-91-2 Glycidyl methacrylate...

  9. 40 CFR 799.5000 - Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ...-64-1 Acetone Health effects January 23, 1995. 71-55-6 1,1,1-Trichloroethane Health effects August 23, 1989. 78-83-1 Isobutyl alcohol Health effects January 23, 1995. 79-10-7 Acrylic Acid Health effects... Health effects September 23, 1991. Chemical fate September 23, 1991. 106-91-2 Glycidyl methacrylate...

  10. 40 CFR 799.5000 - Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... March 4, 1992. 84-74-2 Di-n-butyl phthalate Environmental effects January 9, 1989. 84-75-3 Di-n-hexyl phthalate Environmental effects January 9, 1989. Chemical fate January 9, 1989. 100-40-3 4-Vinylcyclohexene...-ethylhexyl phthalate Chemical fate January 9, 1989. 119-06-2 Ditridecyl phthalate Chemical fate January 9...

  11. 40 CFR 799.5000 - Testing consent orders for substances and mixtures with Chemical Abstract Service Registry Numbers.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... March 4, 1992. 84-74-2 Di-n-butyl phthalate Environmental effects January 9, 1989. 84-75-3 Di-n-hexyl phthalate Environmental effects January 9, 1989. Chemical fate January 9, 1989. 100-40-3 4-Vinylcyclohexene...-ethylhexyl phthalate Chemical fate January 9, 1989. 119-06-2 Ditridecyl phthalate Chemical fate January 9...

  12. The GEOSS User Requirement Registry (URR): A Cross-Cutting Service-Oriented Infrastructure Linking Science, Society and GEOSS

    NASA Astrophysics Data System (ADS)

    Plag, H.-P.; Foley, G.; Jules-Plag, S.; Ondich, G.; Kaufman, J.

    2012-04-01

    The Group on Earth Observations (GEO) is implementing the Global Earth Observation System of Systems (GEOSS) as a user-driven service infrastructure responding to the needs of users in nine interdependent Societal Benefit Areas (SBAs) of Earth observations (EOs). GEOSS applies an interdisciplinary scientific approach integrating observations, research, and knowledge in these SBAs in order to enable scientific interpretation of the collected observations and the extraction of actionable information. Using EOs to actually produce these societal benefits means getting the data and information to users, i.e., decision-makers. Thus, GEO needs to know what the users need and how they would use the information. The GEOSS User Requirements Registry (URR) is developed as a service-oriented infrastructure enabling a wide range of users, including science and technology (S&T) users, to express their needs in terms of EOs and to understand the benefits of GEOSS for their fields. S&T communities need to be involved in both the development and the use of GEOSS, and the development of the URR accounts for the special needs of these communities. The GEOSS Common Infrastructure (GCI) at the core of GEOSS includes system-oriented registries enabling users to discover, access, and use EOs and derived products and services available through GEOSS. In addition, the user-oriented URR is a place for the collection, sharing, and analysis of user needs and EO requirements, and it provides means for an efficient dialog between users and providers. The URR is a community-based infrastructure for the publishing, viewing, and analyzing of user-need related information. The data model of the URR has a core of seven relations for User Types, Applications, Requirements, Research Needs, Infrastructure Needs, Technology Needs, and Capacity Building Needs. The URR also includes a Lexicon, a number of controlled vocabularies, and

  13. Improving Interoperability between Registries and EHRs

    PubMed Central

    Blumenthal, Seth

    2018-01-01

    National performance measurement needs clinical data that track the performance of multi disciplinary teams across episodes of care. Clinical registries are ideal platforms for this work due to their capture of structured, specific data across specialties. Because registries collect data at a national level, and registry data are captured in a consistent structure and format within each registry, registry data are useful for measurement and analysis “out of the box”. Registry business models are hampered by the cost of collecting data from EHRs and other source systems and abstracting or mapping them to fit registry data models. The National Quality Registry Network (NQRN) has launched Registries on FHIR, an initiative to lower barriers to achieving semantic interoperability between registries and source data systems. In 2017 Registries on FHIR conducted an information gathering campaign to learn where registries want better interoperability, and how to go about improving it. PMID:29888033

  14. Pregnancy Registries

    MedlinePlus

    ... is compared with women who have not taken medicine during pregnancy. Enrolling in a pregnancy exposure registry can help ... help. Pregnant Women Health Professionals Find a Registry Medicine and Pregnancy More in Women's Health Research OWH Research and ...

  15. Relative Effectiveness of Titles, Abstracts, and Subject Headings for Machine Retrieval from the COMPENDEX Services

    ERIC Educational Resources Information Center

    Byrne, Jerry R.

    1975-01-01

    Investigated the relative merits of searching on titles, subject headings, abstracts, free-language terms, and combinations of these elements. The combination of titles and abstracts came the closest to 100 percent retrieval. (Author/PF)

  16. Achieving Interoperability Through Base Registries for Governmental Services and Document Management

    NASA Astrophysics Data System (ADS)

    Charalabidis, Yannis; Lampathaki, Fenareti; Askounis, Dimitris

    As digital infrastructures increase their presence worldwide, following the efforts of governments to provide citizens and businesses with high-quality one-stop services, there is a growing need for the systematic management of those newly defined and constantly transforming processes and electronic documents. E-government Interoperability Frameworks usually cater to the technical standards of e-government systems interconnection, but do not address service composition and use by citizens, businesses, or other administrations.

  17. Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study

    PubMed Central

    Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.

    2012-01-01

    Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219

  18. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

    PubMed

    Keegan, Theresa H M; Lichtensztajn, Daphne Y; Kato, Ikuko; Kent, Erin E; Wu, Xiao-Cheng; West, Michelle M; Hamilton, Ann S; Zebrack, Brad; Bellizzi, Keith M; Smith, Ashley W

    2012-09-01

    We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

  19. Using Israel's National Cancer Registry Database to Track Progress in the War against Cancer: A Challenge for Health Services.

    PubMed

    Robinson, Eliezer; Silverman, Barbara G; Keinan-Boker, Lital

    2017-04-01

    The number of cancer survivors has been increasing worldwide and is now approximately 32.6 million and growing. Cancer survivors present a challenge to health care providers because of their higher susceptibility to long-term health outcomes related to their primary disease and treatment. To report on the number of cancer survivors and incident cancer cases in the period 1960-2009 in Israel, in order to provide data on the scope of the challenge Israel's health care funds face. The Israel National Cancer Registry (INCR) database was used to identify new cancer cases diagnosed during the period 1960-2009. Lifetable analysis was used to assess changes in cumulative survival and population prevalence of cancer survivors throughout the 50 year study period. Almost 600,000 invasive cancer cases were diagnosed during the period 1960-2009 (overall absolute survival rate 54%). Within this time period, the number of new patients diagnosed with cancer increased fivefold and that of cancer survivors ninefold. The absolute survival of cancer patients and the prevalence of cancer survivors in the general population significantly increased with time from 34% and 0.5%, respectively (1960-1969), to 62% and 1.9%, respectively (2000-2009). Cumulative absolute survival for 5, 10 and 15 years following diagnosis increased with time as well. The INCR database is useful to assess progress in the war against cancer. The growing numbers of cancer survivors in Israel present a challenge to the national health and social services system.

  20. Health Services Utilization between Older and Younger Homeless Adults.(author Abstract)

    ERIC Educational Resources Information Center

    Nakonezny, Paul A.; Ojeda, Michael

    2005-01-01

    Purpose: Our purpose in the current study was to examine the relationship between health services utilization delivered by means of the Homeless Outreach Medical Services (HOMES) program and health services utilization delivered by means of the Parkland emergency room and inpatient units among a sample of older and younger homeless adults being…

  1. Effect of weather and time on trauma events determined using emergency medical service registry data.

    PubMed

    Lin, Li-Wei; Lin, Hsiao-Yu; Hsu, Chien-Yeh; Rau, Hsiao-Hsien; Chen, Ping-Ling

    2015-09-01

    Trauma admissions are associated with weather and temporal factors; however, previous study results regarding these factors are contradictory. We hypothesised that weather and temporal factors have different effects on specific trauma events in an emergency medical service (EMS) system. EMS data from January 1, 2009, to December 31, 2010, were obtained from the fire department of Taipei City and associated with the local weather data. EMS trauma events were categorised into total trauma, traffic accidents (TAs), motorbike accidents (MBAs), and falls. Hourly data on trauma patients were analysed using the zero-inflated Poisson model. The hourly incidence of total trauma increased with the magnitude of precipitation (incidence rate ratio [IRR]=1.06, 1.09, and 1.11 in light, moderate, and heavy rain, respectively), and this effect was more prominent in fall patients than in patients with other injuries (IRR=1.07, 1.21, and 1.32). However, the hourly incidence of TAs and MBAs was associated only with light rain (IRR=1.11 and 1.06, respectively). An hour of sunshine exposure was associated with an increase in the hourly incidence of all groups, and higher temperatures were associated with an increased hourly incidence of total trauma, TAs, and MBAs, but not falls. The hourly incidence of falls increased only in late fall and winter. Compared with the hourly incidence between 3 am and 7 am, the hourly incidence of all groups plateaued between 7 am and 11 pm and declined from 11 pm to 3 am. During the plateau period, 2 peaks in the incidence of TAs (IRR=5.03 and 5.07, respectively) and MBAs (IRR=5.81 and 5.51, respectively) were observed during 7-11 am and 3-7 pm. The hourly incidence of total trauma, TAs, and MBAs plateaued during workdays, peaked on Fridays, declined on Saturdays, and troughed on Sundays. The incidence of falls increased only on Mondays (IRR=1.09). Weather and temporal factors had different impacts on the incidence of traffic-related accidents and falls

  2. 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.

    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 administrativelymore » 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.« less

  3. Facility Registry Service (FRS)

    EPA Pesticide Factsheets

    This is a centrally managed database that identifies facilities either subject to environmental regulations or of environmental interest, providing an integrated source of air, water, and waste environmental data.

  4. Assessment of the potential quality of preservative-treated pilings removed from service : [abstract

    Treesearch

    Xiping Wang; John W. Forsman; John R. Erickson; Robert J. Ross; Douglas J. Gardner; Gary D. McGinnis; Rodney C. DeGroot

    1999-01-01

    Preservative-treated wood products are important construction materials. Preservative-treated wood pilings, after removal from service, constitute a major disposal problem for managers of waterfront facilities. For example, approximately 7,000 to 8,000 tons of mechanically or biologically deteriorated wood pilings are currently removed from U.S. naval facilities...

  5. Peak Lead Levels and Diagnostics in Lead Service Lines Dominated by PbO2 - abstract

    EPA Science Inventory

    Multiple studies have presented “profiles” of water lead levels from tap to main through lead service lines (LSLs), in systems where the LSLs were coated with common Pb(II) corrosion solids. These Pb(II) solids were either actual Pb(II) minerals or Pb(II) sorbed onto other pipe ...

  6. Use of emergency medical service transport among patients with ST-segment-elevation myocardial infarction: findings from the National Cardiovascular Data Registry Acute Coronary Treatment Intervention Outcomes Network Registry-Get With The Guidelines.

    PubMed

    Mathews, Robin; Peterson, Eric D; Li, Shuang; Roe, Matthew T; Glickman, Seth W; Wiviott, Stephen D; Saucedo, Jorge F; Antman, Elliott M; Jacobs, Alice K; Wang, Tracy Y

    2011-07-12

    Activation of emergency medical services (EMS) is critical for the early triage and treatment of patients experiencing ST-segment-elevation myocardial infarction, yet data regarding EMS use and its association with subsequent clinical care are limited. We performed an observational analysis of 37 634 ST-segment-elevation myocardial infarction patients treated at 372 US hospitals participating in the National Cardiovascular Data Registry Acute Coronary Treatment and Intervention Outcomes Network Registry-Get With the Guidelines between January 2007 and September 2009, and examined independent patient factors associated with EMS transportation versus patient self-transportation. We found that EMS transport was used in only 60% of ST-segment-elevation myocardial infarction patients. Older patients, those living farther from the hospital, and those with hemodynamic compromise were more likely to use EMS transport. In contrast, race, income, and education level did not appear to be associated with the mode of transport. Compared with self-transported patients, EMS-transported patients had significantly shorter delays in both symptom-onset-to-arrival time (median, 89 versus 120 minutes; P<0.0001) and door-to-reperfusion time (median door-to-balloon time, 63 versus 76 minutes; P<0.0001; median door-to-needle time, 23 versus 29 minutes; P<0.0001). Emergency medical services transportation to the hospital is underused among contemporary ST-segment-elevation myocardial infarction patients. Nevertheless, use of EMS transportation is associated with substantial reductions in ischemic time and treatment delays. Community education efforts are needed to improve the use of emergency transport as part of system-wide strategies to improve ST-segment-elevation myocardial infarction reperfusion care.

  7. AAVSO Target Tool: A Web-Based Service for Tracking Variable Star Observations (Abstract)

    NASA Astrophysics Data System (ADS)

    Burger, D.; Stassun, K. G.; Barnes, C.; Kafka, S.; Beck, S.; Li, K.

    2018-06-01

    (Abstract only) The AAVSO Target Tool is a web-based interface for bringing stars in need of observation to the attention of AAVSOís network of amateur and professional astronomers. The site currently tracks over 700 targets of interest, collecting data from them on a regular basis from AAVSOís servers and sorting them based on priority. While the target tool does not require a login, users can obtain visibility times for each target by signing up and entering a telescope location. Other key features of the site include filtering by AAVSO observing section, sorting by different variable types, formatting the data for printing, and exporting the data to a CSV file. The AAVSO Target Tool builds upon seven years of experience developing web applications for astronomical data analysis, most notably on Filtergraph (Burger, D., et al. 2013, Astronomical Data Analysis Software and Systems XXII, Astronomical Society of the Pacific, San Francisco, 399), and is built using the web2py web framework based on the python programming language. The target tool is available at http://filtergraph.com/aavso.

  8. Improving quality of care using a diabetes registry and disease management services in an integrated delivery network.

    PubMed

    Campion, Francis X; Tully, George L; Barrett, Jo-Ann; Andre, Paulo; Sweeney, Ann

    2005-08-01

    Disease management for chronic conditions is a call for collaboration among all parties of the health care system. The Caritas Christi Health Care System established a unified American Diabetes Association (ADA) recognized outpatient diabetes self-management education program (DSME) in each of its six hospital communities and has established an Internet data portal with managed care organizations to improve preventive care for thousands of patients with diabetes. This article describes the stepwise process of building the successful Caritas Diabetes Care Program and the central role of the Caritas Diabetes Registry over a 5-year period.

  9. Substance Identification Information from EPA's Substance Registry

    EPA Pesticide Factsheets

    The Substance Registry Services (SRS) is the authoritative resource for basic information about substances of interest to the U.S. EPA and its state and tribal partners. Substances, particularly chemicals, can have many valid synonyms. For example, toluene, methyl benzene, and phenyl methane, are commonly used names for the same chemical. EPA programs collect environmental data for this chemical using each of these names, plus others. This diversity leads to problems when a user is looking for programmatic data for toluene but is unaware that the data is stored under the synonym methyl benzene. For each substance, the SRS identifies the statutes, EPA programs, as well as organization external to EPA, that track or regulate that substance and the synonym used by that statute, EPA program or external organization. Besides standardized information for each chemical, such as the Chemical Abstracts Services name and the Chemical Abstracts Number and the EPA Registry Name (the EPA standard name), the SRS also includes additional information, such as molecular weight and molecular formula. Additionally, an SRS Internal Tracking Number uniquely identifies each substance, enabling cross-walking between synonyms. EPA is providing a large .ZIP file providing the SRS data in CSV format, and a separate small metadata file in XML containing the field names and definitions.

  10. Efficacy of Indexing and Abstracting Services for the Dissemination of Agricultural Information Resources in the Institure for Agricultural Research Library, Ahmadu Bello University, Zaria

    NASA Astrophysics Data System (ADS)

    Gabriel, KASA, M.

    2012-10-01

    The efficacy of Indexing and Abstracting service for effective organization, storage and retrieval of information resources for agricultural research in Ahmadu Bello University, Zaria necessitated examining the situation in Agricultural Library, Institute for Agricultural Research, Samaru. The study examines the processes, awareness and problems militating against the effective exploitation of the indexing and abstracting services in the Agricultural library established in 1975. The study was conducted ex post facto, data collected span from 2006 ñ 2010. Total sample sizes of 752 patrons and 20,236 intellectually indexed and abstracted resources were involved in the study. Data collected were subjected to descriptive and inferential statistics. The result revealed that a total of 644 articles were indexed and abstracted, 35% of these was done in 2010. Results for awareness show 452 (60.11%) to be aware in 2008. A total 584 articles were indexed and abstracted from which 167 (28.59%) was retrieved in 2006. Patrons, 270 (35.90%) attributed the poor use of the service to assumption it is a referral unit. The hypothesis testing revealed that there is significant association between articles indexed and abstracted with information consulted by patrons (?2cal,100.31>?2tab,9.488) at 5% level of probability and df, 4. In conclusion, enormous documents on Nigerian agriculture are indexed and abstracted in the unit, implying that the service is desirous and consistent. The study recommends that the unit should explore the use of modern technology, employ a permanent subject specialist, train and retrain the unit staff as well as intensify it general orientation campaigns to focus on awareness and use of the indexing and abstracting services.

  11. More frequent use of health care services among distressed compared with nondistressed survivors of lymphoma and chronic lymphocytic leukemia: Results from the population-based PROFILES registry.

    PubMed

    Arts, Lindy P J; Oerlemans, Simone; Tick, Lidwine; Koster, Ad; Roerdink, Henk T J; van de Poll-Franse, Lonneke V

    2018-04-26

    Follow-up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects these survivors may experience as a result of their cancer and treatment have led to more pressure being placed on health care services. The objectives of the current study were to: 1) compare the use of medical care services by survivors with that of a normative population; 2) evaluate the use of medical and psychosocial care services among distressed and nondistressed survivors; and 3) identify associated sociodemographic and clinical factors. Survivors of lymphoma and CLL diagnosed between 1999 and 2012 were selected via the population-based Netherlands Cancer Registry and completed the Hospital Anxiety and Depression Scale questionnaire and questions regarding health care. Outcomes were compared with an age-matched and sex-matched normative population. A total of 1444 survivors responded (69%). Survivors of lymphoma and CLL contacted their general practitioner (3.8 vs 2.3; P<.001) and medical specialist (5.7 vs 1.6; P<.001) more often within the last year compared with a normative population. In addition, psychologically distressed survivors had even more medical contacts and received psychosocial care more often compared with nondistressed survivors. In addition to psychological distress, comorbidity, female sex, and older age were found to be associated with a greater use of medical services, whereas younger age was associated with receiving psychosocial care. Survivors of lymphoma and CLL, especially those who are psychologically distressed, report an increased use of health care services compared with a normative population. Further studies are needed to explore whether the use of widely applicable psychosocial interventions could reduce the frequency of medical contacts. Cancer 2018. © 2018 Netherlands Comprehensive Cancer Organisation. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

  12. Predicting the evolution of low back pain patients in routine clinical practice: results from a registry within the Spanish National Health Service.

    PubMed

    Kovacs, Francisco M; Seco, Jesús; Royuela, Ana; Corcoll Reixach, Josep; Abraira, Víctor

    2012-11-01

    The Spanish National Health Service (SNHS) is a tax-funded public organization that provides free health care to every resident in Spain. To develop models for predicting the evolution of low back pain (LBP) in routine clinical practice within SNHS. Analysis of a prospective registry in routine clinical practice, in 17 centers across SNHS. Patient sample includes 4,477 acute and chronic LBP patients treated in primary and hospital care. Pain and disability, measured through validated instruments. Patients treated for LBP were assessed at baseline and 3 months later. Data gathered were the following: sex, age, employment status, duration of pain, severity of LBP, pain down to the leg (LP) and disability, history of lumbar surgery, diagnostic procedures undertaken, imaging findings, and treatments used throughout the study period. Three separate multivariate logistic regression models were developed for predicting a clinically relevant improvement in LBP, LP, and disability at 3 months. In total, 4,261 patients (95.2%) attended follow-up. For all the models, calibration was reasonable and the area under the receiver operating characteristic curve was ≥0.640. For LBP, LP, and disability, factors associated with a higher probability of improvement at 3 months were the following: not having undergone lumbar surgery, higher baseline scores for the corresponding variable, lower ones for the rest, and being treated with neuroreflexotherapy. Additional factors were the following: for LBP, shorter pain duration; for LP, not undergoing electromyography; and for disability, shorter pain duration, not being diagnosed with disc degeneration, and being treated with muscle relaxants and not opioids. A prospective registry can be used for developing predictive models to quantify the odds that a given LBP patient will experience a clinically relevant improvement. This may empower patients for an informed shared decision making. Copyright © 2012 Elsevier Inc. All rights reserved.

  13. Surgeon length of service and risk-adjusted outcomes: linked observational analysis of the UK National Adult Cardiac Surgery Audit Registry and General Medical Council Register.

    PubMed

    Hickey, Graeme L; Grant, Stuart W; Freemantle, Nick; Cunningham, David; Munsch, Christopher M; Livesey, Steven A; Roxburgh, James; Buchan, Iain; Bridgewater, Ben

    2014-09-01

    To explore the relationship between in-hospital mortality following adult cardiac surgery and the time since primary clinical qualification for the responsible consultant cardiac surgeon (a proxy for experience). Retrospective analysis of prospectively collected national registry data over a 10-year period using mixed-effects multiple logistic regression modelling. Surgeon experience was defined as the time between the date of surgery and award of primary clinical qualification. UK National Health Service hospitals performing cardiac surgery between January 2003 and December 2012. All patients undergoing coronary artery bypass grafts and/or valve surgery under the care of a consultant cardiac surgeon. All-cause in-hospital mortality. A total of 292,973 operations performed by 273 consultant surgeons (with lengths of service from 11.2 to 42.0 years) were included. Crude mortality increased approximately linearly until 33 years service, before decreasing. After adjusting for case-mix and year of surgery, there remained a statistically significant (p=0.002) association between length of service and in-hospital mortality (odds ratio 1.013; 95% CI 1.005-1.021 for each year of 'experience'). Consultant cardiac surgeons take on increasingly complex surgery as they gain experience. With this progression, the incidence of adverse outcomes is expected to increase, as is demonstrated in this study. After adjusting for case-mix using the EuroSCORE, we observed an increased risk of mortality in patients operated on by longer serving surgeons. This finding may reflect under-adjustment for risk, unmeasured confounding or a real association. Further research into outcomes over the time course of surgeon's careers is required. © The Royal Society of Medicine.

  14. Nursing identity and patient-centredness in scholarly health services research: a computational text analysis of PubMed abstracts 1986-2013.

    PubMed

    Bell, Erica; Campbell, Steve; Goldberg, Lynette R

    2015-01-22

    The most important and contested element of nursing identity may be the patient-centredness of nursing, though this concept is not well-treated in the nursing identity literature. More conceptually-based mapping of nursing identity constructs are needed to help nurses shape their identity. The field of computational text analytics offers new opportunities to scrutinise how growing disciplines such as health services research construct nursing identity. This paper maps the conceptual content of scholarly health services research in PubMed as it relates to the patient-centeredness of nursing. Computational text analytics software was used to analyse all health services abstracts in the database PubMed since 1986. Abstracts were treated as indicative of the content of health services research. The database PubMed was searched for all research papers using the term "service" or "services" in the abstract or keywords for the period 01/01/1986 to 30/06/2013. A total of 234,926 abstracts were obtained. Leximancer software was used in 1) mapping of 4,144,458 instances of 107 concepts; 2) analysis of 106 paired concept co-occurrences for the nursing concept; and 3) sentiment analysis of the nursing concept versus patient, family and community concepts, and clinical concepts. Nursing is constructed within quality assurance or service implementation or workforce development concepts. It is relatively disconnected from patient, family or community care concepts. For those who agree that patient-centredness should be a part of nursing identity in practice, this study suggests that there is a need for development of health services research into both the nature of the caring construct in nursing identity and its expression in practice. More fundamentally, the study raises questions about whether health services research cultures even value the politically popular idea of nurses as patient-centred caregivers and whether they should.

  15. Relationship between mathematical abstraction in learning parallel coordinates concept and performance in learning analytic geometry of pre-service mathematics teachers: an investigation

    NASA Astrophysics Data System (ADS)

    Nurhasanah, F.; Kusumah, Y. S.; Sabandar, J.; Suryadi, D.

    2018-05-01

    As one of the non-conventional mathematics concepts, Parallel Coordinates is potential to be learned by pre-service mathematics teachers in order to give them experiences in constructing richer schemes and doing abstraction process. Unfortunately, the study related to this issue is still limited. This study wants to answer a research question “to what extent the abstraction process of pre-service mathematics teachers in learning concept of Parallel Coordinates could indicate their performance in learning Analytic Geometry”. This is a case study that part of a larger study in examining mathematical abstraction of pre-service mathematics teachers in learning non-conventional mathematics concept. Descriptive statistics method is used in this study to analyze the scores from three different tests: Cartesian Coordinate, Parallel Coordinates, and Analytic Geometry. The participants in this study consist of 45 pre-service mathematics teachers. The result shows that there is a linear association between the score on Cartesian Coordinate and Parallel Coordinates. There also found that the higher levels of the abstraction process in learning Parallel Coordinates are linearly associated with higher student achievement in Analytic Geometry. The result of this study shows that the concept of Parallel Coordinates has a significant role for pre-service mathematics teachers in learning Analytic Geometry.

  16. 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

  17. 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

  18. Incidence of sudden cardiac death in Germany: results from an emergency medical service registry in Lower Saxony

    PubMed Central

    Martens, Eimo; Sinner, Moritz F.; Siebermair, Johannes; Raufhake, Carsten; Beckmann, Britt M.; Veith, Stefan; Düvel, Dieter; Steinbeck, Gerhard; Kääb, Stefan

    2014-01-01

    Aims Sudden cardiac death (SCD) is among the most common causes of death in western countries including Germany. Whereas risk stratification and primary prevention is still insufficient, we also lack accurate incidence estimates. Current estimates vary widely (18.6–128/100 000/year), but data on SCD incidence in Germany are missing. Depending on SCD definitions, death needs to occur between 1 and 24 h after the onset of symptoms. Methods and results In the district of Aurich (190 000 inhabitants, Lower Saxony, Germany), emergency medical service (EMS) is provided by a district government operated single carrier and two hospitals. To evaluate all EMS calls in this district from 2002 to 2009, we obtained EMS protocols, medical records, and death certificates for data analysis and adjudication of SCD. We defined SCD according to the definition of the World Health Organization, considering patients with cardiac arrest within ≤1 h after the onset of symptoms. We also required cardiopulmonary resuscitation being performed by EMS personnel. The overall mortality rate in the district of Aurich (1060/100 000/year) corresponded well with the average mortality rate in Germany (1030/100 000/year). During the observation period, we adjudicated 1212 SCD cases, equivalent to an annual rate of 151 SCD cases (81 cases/100 000/year). Rates remained remarkably stable over time, and affected a considerable number of individuals of working age (32/100 000/year). Conclusion Consistent with prior reports, the SCD incidence in a district of Germany is substantial. Despite an elaborate EMS system and advanced medical care, SCD rates remain stable and necessitate improved, individualized risk stratification. PMID:25061228

  19. Incidence of sudden cardiac death in Germany: results from an emergency medical service registry in Lower Saxony.

    PubMed

    Martens, Eimo; Sinner, Moritz F; Siebermair, Johannes; Raufhake, Carsten; Beckmann, Britt M; Veith, Stefan; Düvel, Dieter; Steinbeck, Gerhard; Kääb, Stefan

    2014-12-01

    Sudden cardiac death (SCD) is among the most common causes of death in western countries including Germany. Whereas risk stratification and primary prevention is still insufficient, we also lack accurate incidence estimates. Current estimates vary widely (18.6-128/100,000/year), but data on SCD incidence in Germany are missing. Depending on SCD definitions, death needs to occur between 1 and 24 h after the onset of symptoms. In the district of Aurich (190,000 inhabitants, Lower Saxony, Germany), emergency medical service (EMS) is provided by a district government operated single carrier and two hospitals. To evaluate all EMS calls in this district from 2002 to 2009, we obtained EMS protocols, medical records, and death certificates for data analysis and adjudication of SCD. We defined SCD according to the definition of the World Health Organization, considering patients with cardiac arrest within ≤1 h after the onset of symptoms. We also required cardiopulmonary resuscitation being performed by EMS personnel. The overall mortality rate in the district of Aurich (1060/100,000/year) corresponded well with the average mortality rate in Germany (1030/100,000/year). During the observation period, we adjudicated 1212 SCD cases, equivalent to an annual rate of 151 SCD cases (81 cases/100,000/year). Rates remained remarkably stable over time, and affected a considerable number of individuals of working age (32/100,000/year). Consistent with prior reports, the SCD incidence in a district of Germany is substantial. Despite an elaborate EMS system and advanced medical care, SCD rates remain stable and necessitate improved, individualized risk stratification. © The Author 2014. Published by Oxford University Press on behalf of the European Society of Cardiology.

  20. Selected Research Abstracts of Published and Unpublished Reports Pertaining to the Food Service Industry, Including Recommendations for Research Needs.

    ERIC Educational Resources Information Center

    Nejelski, Leo

    The 251 research abstracts, dated 1956-1968, are arranged under these areas: (1) Industry Statistics and Feasbility Studies, (2) Merchandising, (3) Purchasing, (4) Facilities Design and Operations Analysis, (5) Commissary Operations, (6) Finance and Cost Control, and (7) Personnel Management. Research gaps, determined through interviews with…

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

    PubMed

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

    2016-02-01

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

  2. Registry-based Study of Trends in Breast Cancer Screening Mammography before and after the 2009 U.S. Preventive Services Task Force Recommendations

    PubMed Central

    Bolton, Kenyon C.; Mace, John L.; Herschorn, Sally D.; James, Ted A.; Vacek, Pamela M.; Weaver, Donald L.; Geller, Berta M.

    2014-01-01

    Purpose To determine whether the 2009 U.S. Preventive Services Task Force (USPSTF) guidelines for breast cancer mammography screening were followed by changes in screening utilization in the state of Vermont. Materials and Methods This retrospective study was HIPAA compliant and approved by the institutional review board, with waiver of informed consent. Trends in screening mammography utilization during 1997–2011 were examined among approximately 150 000 women aged 40 years and older in the state of Vermont using statewide mammography registry data. Results The percentage of Vermont women aged 40 years and older screened in the past year declined from 45.3% in 2009% to 41.6% in 2011 (an absolute decrease of −3.7 percentage points; 95% confidence interval [CI]: −3.3, −4.1). The largest decline in utilization was among women aged 40–49 years (−4.8 percentage points; 95% CI: −4.1, −5.4), although substantial declines were also observed among women aged 50–74 years (−3.0 percentage points; 95% CI: −2.6, −3.5) and women aged 75 years and older (−3.1 percentage points; 95% CI: −2.3, −4.0). The percentage of women aged 50–74 years screened within the past 2 years declined by −3.4 percentage points (95% CI: −3.0, −3.9) from 65.4% in 2009 to 61.9% in 2011. Conclusion After years of increasing screening mammography utilization in Vermont, there was a decline in screening, which coincided with the release of the 2009 USPSTF recommendations. The age-specific patterns in utilization were generally consistent with the USPSTF recommendations, although there was also evidence that the percentage of women aged 50–74 years screened in the past 2 years declined since 2009. © RSNA, 2013 PMID:24072778

  3. Second generation registry framework.

    PubMed

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

    2014-01-01

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

  4. The Forest Service, Rocky Mountain Research Station's Southwestern Borderlands Ecosystem Management Project: building on ten years of success [Abstract

    Treesearch

    Gerald J. Gottfried; Carleton B. Edminster

    2005-01-01

    The USDA Forest Service initiated the Southwestern Borderlands Ecosystem Management Project in 1994. The Project concentrates on the unique, relatively unfragmented landscape of exceptional biological diversity in southeastern Arizona and southwestern New Mexico. Its mission is to: "Contribute to the scientific basis for developing and implementing a comprehensive...

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

    PubMed

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

    2012-01-01

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

  6. Workload and Time Management in Central Cancer Registries: Baseline Data and Implication for Registry Staffing

    PubMed Central

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

    2015-01-01

    The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions, together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey. Results indicate that registries faced reductions in budgeted staffing from 2008–2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing, case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however, estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines. PMID:23493024

  7. The utility of heart failure registries: a descriptive and comparative study of two heart failure registries.

    PubMed

    Trullàs, Joan Carles; Miró, Òscar; Formiga, Francesc; Martín-Sánchez, Francisco Javier; Montero-Pérez-Barquero, Manuel; Jacob, Javier; Quirós-López, Raúl; Herrero Puente, Pablo; Manzano, Luís; Llorens, Pere

    2016-05-01

    Registries are useful to address questions that are difficult to answer in clinical trials. The objective of this study was to describe and compare two heart failure (HF) cohorts from two Spanish HF registries. We compared the RICA and EAHFE registries, both of which are prospective multicentre cohort studies including patients with decompensated HF consecutively admitted to internal medicine wards (RICA) or attending the emergency department (EAHFE). From the latter registry we only included patients who were admitted to internal medicine wards. A total of 5137 patients admitted to internal medicine wards were analysed (RICA: 3287 patients; EAHFE: 1850 patients). Both registries included elderly patients (RICA: mean (SD) age 79 (9) years; EAHFE: mean (SD) age 81 (9) years), with a slight predominance of female gender (52% and 58%, respectively, in the RICA and EAHFE registries) and with a high proportion of patients with preserved ejection fraction (58% and 62%, respectively). Some differences in comorbidities were noted, with diabetes mellitus, dyslipidaemia, chronic renal failure and atrial fibrillation being more frequent in the RICA registry while cognitive and functional impairment predominated in the EAHFE registry. The 30-day mortality after discharge was 3.4% in the RICA registry and 4.8% in the EAHFE registry (p<0.05) and the 30-day readmission rate was 7.5% in the RICA registry (readmission to hospital) and 24.0% in the EAHFE registry (readmission to emergency department) (p<0.001). We found differences in the clinical characteristics of patients admitted to Spanish internal medicine wards for decompensated HF depending on inclusion in either the RICA or EAHFE registry. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

  8. 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. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

  9. Use of cross-border healthcare services among ethnic Danes, Turkish immigrants and Turkish descendants in Denmark: a combined survey and registry study

    PubMed Central

    2012-01-01

    Background Healthcare obtained abroad may conflict with care received in the country of residence. A special concern for immigrants has been raised as they may have stronger links to healthcare services abroad. Our objective was to investigate use of healthcare in a foreign country in Turkish immigrants, their descendants, and ethnic Danes. Methods The study was based on a nationwide survey in 2007 with 372 Turkish immigrants, 496 descendants, and 1,131 ethnic Danes aged 18–66. Data were linked to registry data on socioeconomic factors. Using logistic regression models, use of doctor, specialist doctor, hospital, dentist in a foreign country as well as medicine from abroad were estimated. Analyses were adjusted for socioeconomic factors and health symptoms. Results Overall, 26.6% among Turkish immigrants made use of cross-border healthcare, followed by 19.4% among their descendants to 6.7% among ethnic Danes. Using logistic regression models with ethnic Danes as the reference group, Turkish immigrants were seen to have made increased use of general practitioners, specialist doctors, hospitals, and dentists in a foreign country (odds ratio (OR), 5.20-6.74), while Turkish descendants had made increased use of specialist doctors (OR, 4.97) and borderline statistically significant increased use of hospital (OR, 2.48) and dentist (OR, 2.17) but not general practitioners. For medicine, we found no differences among the men, but women with an immigrant background made considerably greater use, compared with ethnic Danish women. Socioeconomic position and health symptoms had a fairly explanatory effect on the use in the different groups. Conclusions Use of cross-border healthcare may have consequences for the continuity of care, including conflicts in the medical treatment, for the patient. Nonetheless, it may be aligned with the patient’s preferences and thereby beneficial for the patient. We need more information about reasons for obtaining cross-border healthcare

  10. Publication Abstracts.

    ERIC Educational Resources Information Center

    Johns Hopkins Univ., Baltimore, MD. Center for the Study of Social Organization of Schools.

    This booklet contains abstracts of 62 documents published by the Johns Hopkins University Center for the Study of Social Organization of Schools from September 1967 to May 1970. The majority of the documents are research studies in the areas of desegregation, language development, educational opportunity, and educational games--most of them…

  11. Abstract Constructions.

    ERIC Educational Resources Information Center

    Pietropola, Anne

    1998-01-01

    Describes a lesson designed to culminate a year of eighth-grade art classes in which students explore elements of design and space by creating 3-D abstract constructions. Outlines the process of using foam board and markers to create various shapes and optical effects. (DSK)

  12. 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

  13. Algerian Abstract

    NASA Image and Video Library

    2017-12-08

    Algerian Abstract - April 8th, 1985 Description: What look like pale yellow paint streaks slashing through a mosaic of mottled colors are ridges of wind-blown sand that make up Erg Iguidi, an area of ever-shifting sand dunes extending from Algeria into Mauritania in northwestern Africa. Erg Iguidi is one of several Saharan ergs, or sand seas, where individual dunes often surpass 500 meters-nearly a third of a mile-in both width and height. Credit: USGS/NASA/Landsat 5 To learn more about the Landsat satellite go to: landsat.gsfc.nasa.gov/ NASA Goddard Space Flight Center enables NASA’s mission through four scientific endeavors: Earth Science, Heliophysics, Solar System Exploration, and Astrophysics. Goddard plays a leading role in NASA’s accomplishments by contributing compelling scientific knowledge to advance the Agency’s mission. Follow us on Twitter Join us on Facebook

  14. EPA Facility Registry System (FRS): NEPT

    EPA Pesticide Factsheets

    This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to the National Environmental Performance Track (NEPT) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

  15. Abstracting and indexing guide

    USGS Publications Warehouse

    ,; ,

    1974-01-01

    These instructions have been prepared for those who abstract and index scientific and technical documents for the Water Resources Scientific Information Center (WRSIC). With the recent publication growth in all fields, information centers have undertaken the task of keeping the various scientific communities aware of current and past developments. An abstract with carefully selected index terms offers the user of WRSIC services a more rapid means for deciding whether a document is pertinent to his needs and professional interests, thus saving him the time necessary to scan the complete work. These means also provide WRSIC with a document representation or surrogate which is more easily stored and manipulated to produce various services. Authors are asked to accept the responsibility for preparing abstracts of their own papers to facilitate quick evaluation, announcement, and dissemination to the scientific community.

  16. 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 ...

  17. [Clinical trials registry].

    PubMed

    Ryder, Elena

    2004-12-01

    Authors and journals are more enthusiastic about the publication of trials with positive results than those negative or inconclusive trials. The International Committee of Medical Journal Editors proposed comprehensive trials registration as a solution to the problem of selective awareness and announces that the ICMJE member journals will adopt a trial-registration policy to promote this goal. They establish as a condition of consideration for publication, registration in a public trials registry. They recommend registries that meet certain criteria as www.clinicaltrials.com. Among those criteria is that the registry must be supported by a non-profit organization. On the other hand, people from Current Controlled Trials Ltd. being a commercial company, but meeting all the other criteria established by the ICMJE, feel that is being put aside. We wonder if clinical trials in our country are being registered in some of these International Registries. If not, would it be time to do so?

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

    PubMed Central

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

    2018-01-01

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

  19. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 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 NOAA...

  20. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 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 NOAA...

  1. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 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 NOAA...

  2. A Prototype Publishing Registry for the Virtual Observatory

    NASA Astrophysics Data System (ADS)

    Williamson, R.; Plante, R.

    2004-07-01

    In the Virtual Observatory (VO), a registry helps users locate resources, such as data and services, in a distributed environment. A general framework for VO registries is now under development within the International Virtual Observatory Alliance (IVOA) Registry Working Group. We present a prototype of one component of this framework: the publishing registry. The publishing registry allows data providers to expose metadata descriptions of their resources to the VO environment. Searchable registries can harvest the metadata from many publishing registries and make them searchable by users. We have developed a prototype publishing registry that data providers can install at their sites to publish their resources. The descriptions are exposed using the Open Archive Initiative (OAI) Protocol for Metadata Harvesting. Automating the input of metadata into registries is critical when a provider wishes to describe many resources. We illustrate various strategies for such automation, both currently in use and planned for the future. We also describe how future versions of the registry can adapt automatically to evolving metadata schemas for describing resources.

  3. Current situation and challenge of registry in China.

    PubMed

    Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

    2014-09-01

    Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

  4. The Vietnam Era Twin Registry: a resource for medical research.

    PubMed Central

    Henderson, W G; Eisen, S; Goldberg, J; True, W R; Barnes, J E; Vitek, M E

    1990-01-01

    The Vietnam Era Twin Registry consists of 4,774 male-male twin pairs born between 1939 and 1957 with both brothers having served in the United States military during the Vietnam War. The registry was originally developed to provide the best control group for Vietnam-exposed servicemen to study the long-term health consequences of service in Vietnam. Recognizing the potential value of the registry for other areas of medical research, the Department of Veterans Affairs in 1988 opened the registry for use by both VA and non-VA investigators. The existence of centralized VA data bases for deaths and VA hospitalizations will strengthen future followup of the twins. This article describes the characteristics of the registry population and the process for accessing the registry. PMID:2116638

  5. The cost of cancer registry operations: Impact of volume on cost per case for core and enhanced registry activities

    PubMed Central

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

    2016-01-01

    Background Cancer registration data is vital for creating evidence-based policies and interventions. Quantifying the resources needed for cancer registration activities and identifying potential efficiencies are critically important to ensure sustainability of cancer registry operations. Methods Using a previously validated web-based cost assessment tool, we collected activity-based cost data and report findings using 3 years of data from 40 National Program of Cancer Registry grantees. We stratified registries by volume: low-volume included fewer than 10,000 cases, medium-volume included 10,000–50,000 cases, and high-volume included >50,000 cases. Results Low-volume cancer registries incurred an average of $93.11 to report a case (without in-kind contributions) compared with $27.70 incurred by high-volume registries. Across all registries, the highest cost per case was incurred for data collection and abstraction ($8.33), management ($6.86), and administration ($4.99). Low- and medium-volume registries have higher costs than high-volume registries for all key activities. Conclusions Some cost differences by volume can be explained by the large fixed costs required for administering and performing registration activities, but other reasons may include the quality of the data initially submitted to the registries from reporting sources such as hospitals and pathology laboratories. Automation or efficiency improvements in data collection can potentially reduce overall costs. PMID:26702880

  6. The Danish Schizophrenia Registry

    PubMed Central

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

    2016-01-01

    Aim of database To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. Main variables The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. Descriptive data The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. Conclusion The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data. PMID:27843348

  7. The Danish Schizophrenia Registry.

    PubMed

    Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

    2016-01-01

    To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data.

  8. Malaysian Twin Registry.

    PubMed

    Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

    2013-02-01

    The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.

  9. The Brazilian Twin Registry.

    PubMed

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

    2016-12-01

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

  10. [Pain registries and similar data collections : A systematic review].

    PubMed

    Freytag, A; Scriba, B; Kaiser, U; Meißner, W

    2016-12-01

    Registries and similar data collections are a valuable addition to prospective studies as they provide data from real life treatment. In pain medicine only few such data collections exist so far. Aim of the study was to identify German-language registries or similar data collections that record patient-reported and pain-associated outcomes together with other data. A systematic search was carried out, which included the following sources: the data bases PubMed/MEDLINE and Embase, the German Registry for Clinical Trials (DRKS), ClinicalTrials.gov and registry portals known to us. Furthermore, an extended internet search was carried out via Google Scholar. References from personal scientific contacts and from operators of registries were also included. Questionnaires regarding registry items were sent to registry operators. Out of 381 search hits, 37 potentially relevant projects received a questionnaire and 35 answered. From the 35 responders 23 registries or similar data collections fulfilling inclusion criteria could be identified: 5 primarily pain-associated, 3 therapy-associated, 2 population-associated and 13 disease-associated (rheumatism/arthritis 5, joints/spine 4, hernias 1 and cancer 3). The reader obtains contact information on relevant data collections associated with pain, the contents, objectives and the pain assessment instruments applied. This review could give an important impulse for increased networking in health services research on pain. A limitation of the study was that identification of registries was made difficult due to an inconsistent definition and application of the term "registry", incomplete or insufficiently updated registry portals, missing scientific publications as well as two non-responders.

  11. The Italian Registry of Antiphospholipid Antibodies.

    PubMed

    Finazzi, G

    1997-01-01

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

  12. Patient and System-Related Delays of Emergency Medical Services Use in Acute ST-Elevation Myocardial Infarction: Results from the Third Gulf Registry of Acute Coronary Events (Gulf RACE-3Ps)

    PubMed Central

    AlHabib, Khalid F.; Sulaiman, Kadhim; Al Suwaidi, Jassim; Almahmeed, Wael; Alsheikh-Ali, Alawi A.; Amin, Haitham; Al Jarallah, Mohammed; Alfaleh, Hussam F.; Panduranga, Prashanth; Hersi, Ahmad; Kashour, Tarek; Al Aseri, Zohair; Ullah, Anhar; Altaradi, Hani B.; Nur Asfina, Kazi; Welsh, Robert C.; Yusuf, Salim

    2016-01-01

    Background Little is known about Emergency Medical Services (EMS) use and pre-hospital triage of patients with acute ST-elevation myocardial infarction (STEMI) in Arabian Gulf countries. Methods Clinical arrival and acute care within 24 h of STEMI symptom onset were compared between patients transferred by EMS (Red Crescent and Inter-Hospital) and those transferred by non-EMS means. Data were retrieved from a prospective registry of 36 hospitals in 6 Arabian Gulf countries, from January 2014 to January 2015. Results We enrolled 2,928 patients; mean age, 52.7 (SD ±11.8) years; 90% men; and 61.7% non-Arabian Gulf citizens. Only 753 patients (25.7%) used EMS; which was mostly via Inter-Hospital EMS (22%) rather than direct transfer from the scene to the hospital by the Red Crescent (3.7%). Compared to the non-EMS group, the EMS group was more likely to arrive initially at a primary or secondary health care facility; thus, they had longer median symptom-onset-to-emergency department arrival times (218 vs. 158 min; p˂.001); they were more likely to receive primary percutaneous coronary interventions (62% vs. 40.5%, p = 0.02); they had shorter door-to-needle times (38 vs. 42 min; p = .04); and shorter door-to-balloon times (47 vs. 83 min; p˂.001). High EMS use was independently predicted mostly by primary/secondary school educational levels and low or moderate socioeconomic status. Low EMS use was predicted by a history of angina and history of percutaneous coronary intervention. The groups had similar in-hospital deaths and outcomes. Conclusion Most acute STEMI patients in the Arabian Gulf region did not use EMS services. Improving Red Crescent infrastructure, establishing integrated STEMI networks, and launching educational public campaigns are top health care system priorities. PMID:26807577

  13. Patient and System-Related Delays of Emergency Medical Services Use in Acute ST-Elevation Myocardial Infarction: Results from the Third Gulf Registry of Acute Coronary Events (Gulf RACE-3Ps).

    PubMed

    AlHabib, Khalid F; Sulaiman, Kadhim; Al Suwaidi, Jassim; Almahmeed, Wael; Alsheikh-Ali, Alawi A; Amin, Haitham; Al Jarallah, Mohammed; Alfaleh, Hussam F; Panduranga, Prashanth; Hersi, Ahmad; Kashour, Tarek; Al Aseri, Zohair; Ullah, Anhar; Altaradi, Hani B; Nur Asfina, Kazi; Welsh, Robert C; Yusuf, Salim

    2016-01-01

    Little is known about Emergency Medical Services (EMS) use and pre-hospital triage of patients with acute ST-elevation myocardial infarction (STEMI) in Arabian Gulf countries. Clinical arrival and acute care within 24 h of STEMI symptom onset were compared between patients transferred by EMS (Red Crescent and Inter-Hospital) and those transferred by non-EMS means. Data were retrieved from a prospective registry of 36 hospitals in 6 Arabian Gulf countries, from January 2014 to January 2015. We enrolled 2,928 patients; mean age, 52.7 (SD ±11.8) years; 90% men; and 61.7% non-Arabian Gulf citizens. Only 753 patients (25.7%) used EMS; which was mostly via Inter-Hospital EMS (22%) rather than direct transfer from the scene to the hospital by the Red Crescent (3.7%). Compared to the non-EMS group, the EMS group was more likely to arrive initially at a primary or secondary health care facility; thus, they had longer median symptom-onset-to-emergency department arrival times (218 vs. 158 min; p˂.001); they were more likely to receive primary percutaneous coronary interventions (62% vs. 40.5%, p = 0.02); they had shorter door-to-needle times (38 vs. 42 min; p = .04); and shorter door-to-balloon times (47 vs. 83 min; p˂.001). High EMS use was independently predicted mostly by primary/secondary school educational levels and low or moderate socioeconomic status. Low EMS use was predicted by a history of angina and history of percutaneous coronary intervention. The groups had similar in-hospital deaths and outcomes. Most acute STEMI patients in the Arabian Gulf region did not use EMS services. Improving Red Crescent infrastructure, establishing integrated STEMI networks, and launching educational public campaigns are top health care system priorities.

  14. 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

  15. Prehospital system delay in ST-segment elevation myocardial infarction care: a novel linkage of emergency medicine services and in hospital registry data.

    PubMed

    Fosbøl, Emil L; Granger, Christopher B; Peterson, Eric D; Lin, Li; Lytle, Barbara L; Shofer, Frances S; Lohmeier, Chad; Mears, Greg D; Garvey, J Lee; Corbett, Claire C; Jollis, James G; Glickman, Seth W

    2013-03-01

    Emergency medical services (EMS) are critical in the treatment of ST-segment elevation myocardial infarction (STEMI). Prehospital system delays are an important target for improving timely STEMI care, yet few limited data are available. Using a deterministic approach, we merged EMS data from the North Carolina Pre-hospital Medical Information System (PreMIS) with data from the Reperfusion of Acute Myocardial Infarction in Carolina Emergency Departments-Emergency Response (RACE-ER) Project. Our sample included all patients with STEMI from June 2008 to October 2010 who arrived by EMS and who had primary percutaneous coronary intervention (PCI). Prehospital system delays were compared using both RACE-ER and PreMIS to examine agreement between the 2 data sources. Overall, 8,680 patients with STEMI in RACE-ER arrived at a PCI hospital by EMS; 21 RACE-ER hospitals and 178 corresponding EMS agencies across the state were represented. Of these, 6,010 (69%) patients were successfully linked with PreMIS. Linked and notlinked patients were similar. Overall, 2,696 patients were treated with PCI only and were taken directly to a PCI-capable hospital by EMS; 1,750 were transferred from a non-PCI facility. For those being transported directly to a PCI center, 53% reached the 90-minute target guideline goal. For those transferred from a non-PCI facility, 24% reached the 120-minute target goal for primary PCI. We successfully linked prehospital EMS data with in hospital clinical data. With this linked STEMI cohort, less than half of patients reach goals set by guidelines. Such a data source could be used for future research and quality improvement interventions. Copyright © 2013 Mosby, Inc. All rights reserved.

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

    PubMed

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

    2016-01-19

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

  17. Pseudonyms for cancer registries.

    PubMed

    Pommerening, K; Miller, M; Schmidtmann, I; Michaelis, J

    1996-06-01

    In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

  18. Automated Tumor Registry for Oncology. A VA-DHCP MUMPS application.

    PubMed

    Richie, S

    1992-01-01

    The VA Automated Tumor Registry for Oncology, Version 2, is a multifaceted, completely automated user-friendly cancer database. Easy to use modules include: Automatic Casefinding; Suspense Files; Abstracting and Printing; Follow-up; Annual Reports; Statistical Reports; Utility Functions.

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

    PubMed

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

    2017-12-01

    The status of pediatric clinical trials performed in South Korea in the last decade, including clinical trials of drugs with unapproved indications for children, has not been previously examined. The aim was to provide information regarding the current state of pediatric clinical trials and create a basis for future trials performed in South Korea by reviewing three databases of clinical trials registrations. We searched for pediatric clinical studies (participants <18 years old) conducted in South Korea between 2006 and 2015 registered on the Clinical Research Information Service (CRIS), ClinicalTrials.gov, and the European Clinical Trials Registry (EuCTR). Additionally, we reviewed whether unapproved indications were involved in each trial by comparing the trials with a list of authorized trials provided by the Ministry of Food and Drug Safety (MFDS). The primary and secondary outcomes were to determine the change in number of pediatric clinical trials with unapproved indications over time and to assess the status of unauthorized pediatric clinical trials from the MFDS and the publication of articles after these clinical trials, respectively. We identified 342 clinical studies registered in the CRIS (n = 81), ClinicalTrials.gov (n = 225), and EuCTR (n = 36), of which 306 were reviewed after excluding duplicate registrations. Among them, 181 studies were interventional trials dealing with drugs and biological agents, of which 129 (71.3%) involved unapproved drugs. Of these 129 trials, 107 (82.9%) were authorized by the MFDS. Pediatric clinical trials in South Korea aiming to establish the safety and efficacy of drugs in children are increasing; however, non-MFDS-authorized studies remain an issue.

  20. Characteristics and temporal trends in patient registries: focus on the life sciences industry, 1981–2012

    PubMed Central

    Travers, Karin; Sallum, Rachel H; Burns, Meghan D; Barr, Charles E; Beattie, Mary S; Pashos, Chris L; Luce, Bryan R

    2015-01-01

    Purpose Patient registries are used to monitor safety, examine real-world effectiveness, and may potentially contribute to comparative effectiveness research. To our knowledge, life sciences industry (LSI)-sponsored registries have not been systematically categorized. This study represents a first step toward understanding such registries over time. Methods Studies described as registries were identified in the ClinicalTrials.gov database. Characteristics from these registry records were abstracted and analyzed. Results Of 1202 registries identified, approximately 47% reported LSI sponsorship. These 562 LSI registries varied in focus: medical devices (n = 193, 34%), specific drugs (n = 173, 31%), procedures (n = 29, 5%), or particular diseases (n = 139, 25%). Thirty-three registries (<6%) evaluated pregnancy outcomes. The most common therapeutic area was cardiovascular (n = 234, 42%); others included endocrinology, immunology, oncology, musculoskeletal disorders, and neurology. The two most often measured outcomes were clinical effectiveness and safety, each of which appeared in 363/562 (65%) of LSI registries. Other outcomes included real-world clinical practice patterns (n = 122, 22%), patient-reported outcomes (n = 106, 19%), disease epidemiology/natural history (n = 69, 12%), and economic outcomes (n = 30, 5%). The number of LSI registries and their geographic diversity has increased over time. Conclusions The LSI registries represent a substantial proportion of all patient registries documented in ClinicalTrials.gov. These prospective studies are growing in number and encompass diverse therapeutic areas and geographic regions. Most registries measure multiple outcomes and capture real-world data that may be unavailable through other study designs. This classification of LSI registries documents their use for studying heterogeneity of diseases, examining treatment patterns, measuring patient-reported outcomes, examining economic outcomes, and performing

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

    PubMed Central

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

    2018-01-01

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

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

    PubMed

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

    2016-12-01

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

  3. World apheresis registry report.

    PubMed

    Stegmayr, Bernd; Ptak, Jan; Wikström, Björn

    2007-02-01

    The establishment of national apheresis registries has been helpful to learn about therapeutic profiles and adverse event incidences. During 2003, the World Apheresis Registry was established and centers from all countries were invited to participate to register their apheresis activities (at www.iml.umu.se/medicin). In this paper, we will report and analyze the first data retrieved from three centers, in 2 European countries, that registered a total of 388 therapeutic apheresis treatments in 122 patients, 95% due to acute indications. Statistical analyses were performed using an independent Student t-test and Fisher's test. A p-value of less than 0.05 was considered significant. Fifty percent of the treated patients were women. The mean age of the patients was 51 years (+/-17, range 16-84) and there was no difference between genders (w 50.4, m 51.6 years). Diagnoses for treatment were mainly neurological and vasculitis. In 63% peripheral access was used with a central double lumen catheter, 22% in the jugular vein, 8% in the subclavian vein and 6% the femoral vein. Significant inter-center differences were seen in regard to the access used. The main technique used was centrifugation for conventional plasma exchange (86%), while other modes were leukapheresis, erythrapheresis, platelet apheresis, LDL-apheresis and adsorption of antibodies. Citrate was the only anticoagulant in 92%. During plasma exchange procedures using centrifugation, replacement was by albumin only (58%) or plasma, the latter often in combination with albumin (42%). Adverse events (AEs) were noted in 11% of the procedures. Patients with hypocalcaemia side effects with tingling sensations were included in those data as mild AE and as moderate AEs if they received calcium (Ca) medication. No patient died due to adverse effects. A mild AE was present in 1.8% and moderate in 8.5%. During two procedures (0.5%), the AE was considered severe and therefore the procedure was interrupted. If those with

  4. The Glider registry.

    PubMed

    Secco, Gioel Gabrio; Rittger, Harald; Hoffmann, Stefan; Richardt, Gert; Abdel-Wahab, Mohamed; Reinecke, Holger; Lotan, Chaim; Werner, Gerald; Sievert, Horst; Foin, Nicolas; Di Mario, Carlo

    2017-01-01

    Provisional stenting of the side-branch (SB) is the universally accepted gold standard while there is still controversy on the usefulness of routine dilatation of the SB ostium. Recrossing the struts of a previously deployed stent with a wire and a balloon can prove challenging and is occasionally unsuccessful, mainly because the balloon tip hits a stent strut. This prospective multicenter international registry tested the crossing ability procedural results of a new-dedicated ultrashort balloon specifically designed for side branch dilatation (Glider, TriReme Medical, Pleasanton, CA, USA). One hundred and twenty five patients (for a total of 131 bifurcation lesions) were enrolled in the registry between January 2009 and May 2012. The Glider was used as first choice in alternative to conventional balloon (group I, 72%) or as bail-out after unsuccessful previous attempt at crossing with small conventional low-profile balloons (group II, 28%). Postprocedural coronary artery dissections and in-hospital MACE (death, myocardial infarction and repeat revascularization) were assessed. Technical success was defined as the ability of the Glider to recross the struts of a previously deployed stent while procedural success was defined as less of residual 50% diameter stenosis at the origin of the SB with a final TIMI 3 and/or freedom from in-hospital MACE. Technical success was achieved, respectively, in 92% (group I), and 83% (group II). Clinical and angiographic procedural success was achieved in 98% of the lesions. In Group II, no other balloon of the same size could cross in cases where Glider could not. A total of 13 complications were observed, including nine ostial SB dissection four of which needed a second stent on the SB, one stent loss, two severe coronary spasms, and two by thrombus formation. The unique possibility offered by this short dedicated balloon to orientate its beveled tip provides an effective strategy for recrossing stent struts when conventional low

  5. Impact of clinical registries on quality of patient care and health outcomes: protocol for a systematic review.

    PubMed

    Hoque, Dewan Md Emdadul; Kumari, Varuni; Ruseckaite, Rasa; Romero, Lorena; Evans, Sue M

    2016-04-26

    Many developed countries have regional and national clinical registries aimed at improving health outcomes of patients diagnosed with particular diseases or cared for in particular healthcare settings. Clinical quality registries (CQRs) are clinical registries established with the purpose of monitoring quality of care and providing feedback to improve health outcomes. The aim of this systematic review is to understand the impact of CQRs on (1) mortality/survival; (2) measures of outcome that reflect a process or outcome of healthcare; (3) healthcare utilisation and (4) costs. The PRISMA-P methodology, checklist and standard strategy using predefined inclusion and exclusion criteria and structured data abstraction tools will be followed. A search of the electronic databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and CINAHL will be undertaken, in addition to Google Scholar and grey literature, to identify studies in English covering the period January 1980 to December 2014. Case-control, cohort, randomised controlled trials and controlled clinical trials which describe the registry as an intervention will be eligible for inclusion. Narrative synthesis of study findings will be conducted, guided by a conceptual framework developed to analyse the outcome measure of the registry using defined criteria. If sufficient studies are identified with a similar outcome of interest and measure using the same comparator and time of interval, results will be pooled for random-effects meta-analysis. Test for heterogeneity and sensitivity analysis will be conducted. To identify reporting bias, forest plots and funnel plots will be created and, if required, Egger's test will be conducted. Ethical approval is not required as primary data will not be collected. Review results will be published as a part of thesis, peer-reviewed journal and conferences. CRD42015017319. Published by the BMJ Publishing Group Limited. For permission to use (where not

  6. 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

  7. Respiratory diseases registries in the national registry of rare diseases.

    PubMed

    Lara Gallego, Beatriz; Abaitua Borda, Ignacio; Galán Gil, Genaro; Castillo Villegas, Diego; Casanova Espinosa, Álvaro; Cano Jiménez, Esteban; Ojanguren Arranz, Iñigo; Posada de la Paz, Manuel

    2014-09-01

    This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitrypsin deficiency, idiopathic tracheal stenosis, adult pulmonary Langerhans' cell histiocytosis, lymphangioleiomyomatosis, alveolar proteinosis, and sarcoidosis. Copyright © 2013 SEPAR. Published by Elsevier Espana. All rights reserved.

  8. ABSTRACTS OF RESEARCH REPORTS.

    DTIC Science & Technology

    DENTISTRY, ABSTRACTS), TEETH, DISEASES, MOUTH, TRANSPLANTATION, HYGIENE, STERILIZATION, FLUORIDES, HISTOLOGY, SURGICAL IMPLANTATION, OXYTETRACYCLINE , GELATINS, CELLULOSE, CASTING, PROGRAMMED INSTRUCTION, TRAINING DEVICES

  9. Genetic Testing Registry

    MedlinePlus

    ... Splign Vector Alignment Search Tool (VAST) All Data & Software Resources... Domains & Structures BioSystems Cn3D Conserved Domain Database (CDD) Conserved Domain Search Service (CD Search) Structure (Molecular Modeling Database) Vector Alignment ...

  10. Abstracting Concepts and Methods.

    ERIC Educational Resources Information Center

    Borko, Harold; Bernier, Charles L.

    This text provides a complete discussion of abstracts--their history, production, organization, publication--and of indexing. Instructions for abstracting are outlined, and standards and criteria for abstracting are stated. Management, automation, and personnel are discussed in terms of possible economies that can be derived from the introduction…

  11. Abstraction and Consolidation

    ERIC Educational Resources Information Center

    Monaghan, John; Ozmantar, Mehmet Fatih

    2006-01-01

    The framework for this paper is a recently developed theory of abstraction in context. The paper reports on data collected from one student working on tasks concerned with absolute value functions. It examines the relationship between mathematical constructions and abstractions. It argues that an abstraction is a consolidated construction that can…

  12. eRegistries: governance for electronic maternal and child health registries.

    PubMed

    Myhre, Sonja L; Kaye, Jane; Bygrave, Lee A; Aanestad, Margunn; Ghanem, Buthaina; Mechael, Patricia; Frøen, J Frederik

    2016-09-23

    The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries. This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues. According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards. Addressing legal requirements and ensuring that privacy and data security

  13. Review of patient registries in dermatology.

    PubMed

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

    2016-10-01

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

  14. An RDF version of the VO Registry Version 1.00

    NASA Astrophysics Data System (ADS)

    Gray, Norman; Gray, Norman

    2007-09-01

    We describe the initial implementation of an RDF version of the IVOA Resource Registry, serving the registry data via a SPARQL query endpoint, including the creation of the ontology analogues of an important subset of the relevant XML Schemas, and the mechanics of the conversion process. The result is an experimental service, and this is an interim document.

  15. 78 FR 44625 - Proposed Information Collection (Open Burn Pit Registry Airborne Hazard Self-Assessment...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-07-24

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

  16. 75 FR 38683 - Federal Acquisition Regulation; FAR Case 2008-035, Registry of Disaster Response Contractors

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-02

    ... Response Contractors AGENCIES: Department of Defense (DoD), General Services Administration (GSA), and... of a registry of disaster response contractors. DATES: Effective Date: August 2, 2010. FOR FURTHER..., requires the establishment and maintenance of a registry of contractors willing to perform debris removal...

  17. 2018 Congress Poster Abstracts

    PubMed

    2018-02-21

    Each abstract has been indexed according to the first author. Abstracts appear as they were submitted and have not undergone editing or the Oncology Nursing Forum’s review process. Only abstracts that will be presented appear here. Poster numbers are subject to change. For updated poster numbers, visit congress.ons.org or check the Congress guide. Data published in abstracts presented at the ONS 43rd Annual Congress are embargoed until the conclusion of the presentation. Coverage and/or distribution of an abstract, poster, or any of its supplemental material to or by the news media, any commercial entity, or individuals, including the authors of said abstract, is strictly prohibited until the embargo is lifted. Promotion of general topics and speakers is encouraged within these guidelines.

  18. Research Abstracts of 1982.

    DTIC Science & Technology

    1982-12-01

    Third Molars in Naval Personnel,- (Abstract #1430) 7. A. SEROWSKI* and F. AKER --"The Effect of Marine and Fresh-Water Atmospheric Environments on...Packaged Dental Instrument4’, (Abstract #1133) 8. I. L. SHKLAIR*, R. W. GAUGLER, R. G. WALTER -.The Effect of Three Surfactants on Controlling Caries...Insoluble Streptococcal Glucan"’. e (Abstract #102) - _/_ / 10. R. G. WALTER* and I. L. SHKLAIR - The Effect of T-10 Dextran on Caries and Plaque in

  19. The value of trauma registries.

    PubMed

    Moore, Lynne; Clark, David E

    2008-06-01

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

  20. Paper Abstract Animals

    ERIC Educational Resources Information Center

    Sutley, Jane

    2010-01-01

    Abstraction is, in effect, a simplification and reduction of shapes with an absence of detail designed to comprise the essence of the more naturalistic images being depicted. Without even intending to, young children consistently create interesting, and sometimes beautiful, abstract compositions. A child's creations, moreover, will always seem to…

  1. Designing for Mathematical Abstraction

    ERIC Educational Resources Information Center

    Pratt, Dave; Noss, Richard

    2010-01-01

    Our focus is on the design of systems (pedagogical, technical, social) that encourage mathematical abstraction, a process we refer to as "designing for abstraction." In this paper, we draw on detailed design experiments from our research on children's understanding about chance and distribution to re-present this work as a case study in designing…

  2. Concept Formation and Abstraction.

    ERIC Educational Resources Information Center

    Lunzer, Eric A.

    1979-01-01

    This paper examines the nature of concepts and conceptual processes and the manner of their formation. It argues that a process of successive abstraction and systematization is central to the evolution of conceptual structures. Classificatory processes are discussed and three levels of abstraction outlined. (Author/SJL)

  3. Is It Really Abstract?

    ERIC Educational Resources Information Center

    Kernan, Christine

    2011-01-01

    For this author, one of the most enjoyable aspects of teaching elementary art is the willingness of students to embrace the different styles of art introduced to them. In this article, she describes a project that allows upper-elementary students to learn about abstract art and the lives of some of the master abstract artists, implement the idea…

  4. Data Abstraction in GLISP.

    ERIC Educational Resources Information Center

    Novak, Gordon S., Jr.

    GLISP is a high-level computer language (based on Lisp and including Lisp as a sublanguage) which is compiled into Lisp. GLISP programs are compiled relative to a knowledge base of object descriptions, a form of abstract datatypes. A primary goal of the use of abstract datatypes in GLISP is to allow program code to be written in terms of objects,…

  5. Check Sample Abstracts.

    PubMed

    Alter, David; Grenache, David G; Bosler, David S; Karcher, Raymond E; Nichols, James; Rajadhyaksha, Aparna; Camelo-Piragua, Sandra; Rauch, Carol; Huddleston, Brent J; Frank, Elizabeth L; Sluss, Patrick M; Lewandrowski, Kent; Eichhorn, John H; Hall, Janet E; Rahman, Saud S; McPherson, Richard A; Kiechle, Frederick L; Hammett-Stabler, Catherine; Pierce, Kristin A; Kloehn, Erica A; Thomas, Patricia A; Walts, Ann E; Madan, Rashna; Schlesinger, Kathie; Nawgiri, Ranjana; Bhutani, Manoop; Kanber, Yonca; Abati, Andrea; Atkins, Kristen A; Farrar, Robert; Gopez, Evelyn Valencerina; Jhala, Darshana; Griffin, Sonya; Jhala, Khushboo; Jhala, Nirag; Bentz, Joel S; Emerson, Lyska; Chadwick, Barbara E; Barroeta, Julieta E; Baloch, Zubair W; Collins, Brian T; Middleton, Owen L; Davis, Gregory G; Haden-Pinneri, Kathryn; Chu, Albert Y; Keylock, Joren B; Ramoso, Robert; Thoene, Cynthia A; Stewart, Donna; Pierce, Arand; Barry, Michelle; Aljinovic, Nika; Gardner, David L; Barry, Michelle; Shields, Lisa B E; Arnold, Jack; Stewart, Donna; Martin, Erica L; Rakow, Rex J; Paddock, Christopher; Zaki, Sherif R; Prahlow, Joseph A; Stewart, Donna; Shields, Lisa B E; Rolf, Cristin M; Falzon, Andrew L; Hudacki, Rachel; Mazzella, Fermina M; Bethel, Melissa; Zarrin-Khameh, Neda; Gresik, M Vicky; Gill, Ryan; Karlon, William; Etzell, Joan; Deftos, Michael; Karlon, William J; Etzell, Joan E; Wang, Endi; Lu, Chuanyi M; Manion, Elizabeth; Rosenthal, Nancy; Wang, Endi; Lu, Chuanyi M; Tang, Patrick; Petric, Martin; Schade, Andrew E; Hall, Geraldine S; Oethinger, Margret; Hall, Geraldine; Picton, Avis R; Hoang, Linda; Imperial, Miguel Ranoa; Kibsey, Pamela; Waites, Ken; Duffy, Lynn; Hall, Geraldine S; Salangsang, Jo-Anne M; Bravo, Lulette Tricia C; Oethinger, Margaret D; Veras, Emanuela; Silva, Elvia; Vicens, Jimena; Silva, Elvio; Keylock, Joren; Hempel, James; Rushing, Elizabeth; Posligua, Lorena E; Deavers, Michael T; Nash, Jason W; Basturk, Olca; Perle, Mary Ann; Greco, Alba; Lee, Peng; Maru, Dipen; Weydert, Jamie Allen; Stevens, Todd M; Brownlee, Noel A; Kemper, April E; Williams, H James; Oliverio, Brock J; Al-Agha, Osama M; Eskue, Kyle L; Newlands, Shawn D; Eltorky, Mahmoud A; Puri, Puja K; Royer, Michael C; Rush, Walter L; Tavora, Fabio; Galvin, Jeffrey R; Franks, Teri J; Carter, James Elliot; Kahn, Andrea Graciela; Lozada Muñoz, Luis R; Houghton, Dan; Land, Kevin J; Nester, Theresa; Gildea, Jacob; Lefkowitz, Jerry; Lacount, Rachel A; Thompson, Hannis W; Refaai, Majed A; Quillen, Karen; Lopez, Ana Ortega; Goldfinger, Dennis; Muram, Talia; Thompson, Hannis

    2009-02-01

    The following abstracts are compiled from Check Sample exercises published in 2008. These peer-reviewed case studies assist laboratory professionals with continuing medical education and are developed in the areas of clinical chemistry, cytopathology, forensic pathology, hematology, microbiology, surgical pathology, and transfusion medicine. Abstracts for all exercises published in the program will appear annually in AJCP.

  6. Energy Research Abstracts. [DOE abstract journal

    SciTech Connect

    Not Available

    1981-01-01

    Energy Research Abstracts (ERA) provides abstracting and indexing coverage of all scientific and technical reports, journal articles, conference papers and proceedings, books, patents, theses, and monographs originated by the US Department of Energy, its laboratories, energy centers, and contractors. ERA also covers other energy information prepared in report form by federal and state government organizations, foreign governments, and domestic and foreign universities and research organizations. ERA coverage of non-report literature is limited to that generated by Department of Energy activity. ERA is comprehensive in its subject scope, encompassing the DOE's research, development, demonstration, and technological programs resulting from its broadmore » charter for energy sources, conservation, safety, environmental impacts, and regulation. Corporate, author, subject, report number, and contract number indexes are included. ERA is available on an exchange basis to universities, research intitutions, industrial firms, and publishers of scientific information. Federal, state, and municipal agencies concerned with energy development, conservation, and usage may obtain ERA free of charge. Inquiries should be directed to the Technical Information Center, P.O. Box 62, Oak Ridge, Tennessee 37830. ERA is available to the public on a subscription basis for 24 semimonthly issues including a semiannual index and an annual index. All citations announced in ERA exist as separate records in the DOE Energy Data Base.« less

  7. Abstract Datatypes in PVS

    NASA Technical Reports Server (NTRS)

    Owre, Sam; Shankar, Natarajan

    1997-01-01

    PVS (Prototype Verification System) is a general-purpose environment for developing specifications and proofs. This document deals primarily with the abstract datatype mechanism in PVS which generates theories containing axioms and definitions for a class of recursive datatypes. The concepts underlying the abstract datatype mechanism are illustrated using ordered binary trees as an example. Binary trees are described by a PVS abstract datatype that is parametric in its value type. The type of ordered binary trees is then presented as a subtype of binary trees where the ordering relation is also taken as a parameter. We define the operations of inserting an element into, and searching for an element in an ordered binary tree; the bulk of the report is devoted to PVS proofs of some useful properties of these operations. These proofs illustrate various approaches to proving properties of abstract datatype operations. They also describe the built-in capabilities of the PVS proof checker for simplifying abstract datatype expressions.

  8. 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

  9. Abstract Interpreters for Free

    NASA Astrophysics Data System (ADS)

    Might, Matthew

    In small-step abstract interpretations, the concrete and abstract semantics bear an uncanny resemblance. In this work, we present an analysis-design methodology that both explains and exploits that resemblance. Specifically, we present a two-step method to convert a small-step concrete semantics into a family of sound, computable abstract interpretations. The first step re-factors the concrete state-space to eliminate recursive structure; this refactoring of the state-space simultaneously determines a store-passing-style transformation on the underlying concrete semantics. The second step uses inference rules to generate an abstract state-space and a Galois connection simultaneously. The Galois connection allows the calculation of the "optimal" abstract interpretation. The two-step process is unambiguous, but nondeterministic: at each step, analysis designers face choices. Some of these choices ultimately influence properties such as flow-, field- and context-sensitivity. Thus, under the method, we can give the emergence of these properties a graph-theoretic characterization. To illustrate the method, we systematically abstract the continuation-passing style lambda calculus to arrive at two distinct families of analyses. The first is the well-known k-CFA family of analyses. The second consists of novel "environment-centric" abstract interpretations, none of which appear in the literature on static analysis of higher-order programs.

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

    PubMed

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

    2014-06-07

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

  11. 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

  12. Strengthening Renal Registries and ESRD Research in Africa.

    PubMed

    Davids, M Razeen; Caskey, Fergus J; Young, Taryn; Balbir Singh, Gillian K

    2017-05-01

    In Africa, the combination of noncommunicable diseases, infectious diseases, exposure to environmental toxins, and acute kidney injury related to trauma and childbirth are driving an epidemic of chronic kidney disease and end-stage renal disease (ESRD). Good registry data can inform the planning of renal services and can be used to argue for better resource allocation, audit the delivery and quality of care, and monitor the impact of interventions. Few African countries have established renal registries and most have failed owing to resource constraints. In this article we briefly review the burden of chronic kidney disease and ESRD in Africa, and then consider the research questions that could be addressed by renal registries. We describe examples of the impact of registry data and summarize the sparse primary literature on country-wide renal replacement therapy in African countries over the past 20 years. Finally, we highlight some initiatives and opportunities for strengthening research on ESRD and renal replacement therapy in Africa. These include the establishment of the African Renal Registry and the availability of new areas for research. We also discuss capacity building, collaboration, open-access publication, and the strengthening of local journals, all measures that may improve the quantity, visibility, and impact of African research outputs. Copyright © 2017 Elsevier Inc. All rights reserved.

  13. Australia and New Zealand Dialysis and Transplant Registry.

    PubMed

    McDonald, Stephen P

    2015-06-01

    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.

  14. Automatic Abstraction in Planning

    NASA Technical Reports Server (NTRS)

    Christensen, J.

    1991-01-01

    Traditionally, abstraction in planning has been accomplished by either state abstraction or operator abstraction, neither of which has been fully automatic. We present a new method, predicate relaxation, for automatically performing state abstraction. PABLO, a nonlinear hierarchical planner, implements predicate relaxation. Theoretical, as well as empirical results are presented which demonstrate the potential advantages of using predicate relaxation in planning. We also present a new definition of hierarchical operators that allows us to guarantee a limited form of completeness. This new definition is shown to be, in some ways, more flexible than previous definitions of hierarchical operators. Finally, a Classical Truth Criterion is presented that is proven to be sound and complete for a planning formalism that is general enough to include most classical planning formalisms that are based on the STRIPS assumption.

  15. Conference Abstracts: AEDS '82.

    ERIC Educational Resources Information Center

    Journal of Computers in Mathematics and Science Teaching, 1982

    1982-01-01

    Abstracts from nine selected papers presented at the 1982 Association for Educational Data Systems (AEDS) conference are provided. Copies of conference proceedings may be obtained for fifteen dollars from the Association. (MP)

  16. Abstracts of SIG Sessions.

    ERIC Educational Resources Information Center

    Proceedings of the ASIS Annual Meeting, 1996

    1996-01-01

    Includes abstracts of special interest group (SIG) sessions. Highlights include digital imagery; text summarization; browsing; digital libraries; icons and the Web; information management; curricula planning; interfaces; information systems; theories; scholarly and scientific communication; global development; archives; document delivery;…

  17. Abstracts of SIG Sessions.

    ERIC Educational Resources Information Center

    Proceedings of the ASIS Annual Meeting, 1997

    1997-01-01

    Presents abstracts of SIG Sessions. Highlights include digital collections; information retrieval methods; public interest/fair use; classification and indexing; electronic publication; funding; globalization; information technology projects; interface design; networking in developing countries; metadata; multilingual databases; networked…

  18. Abstracts of contributed papers

    SciTech Connect

    Not Available

    1994-08-01

    This volume contains 571 abstracts of contributed papers to be presented during the Twelfth US National Congress of Applied Mechanics. Abstracts are arranged in the order in which they fall in the program -- the main sessions are listed chronologically in the Table of Contents. The Author Index is in alphabetical order and lists each paper number (matching the schedule in the Final Program) with its corresponding page number in the book.

  19. The Mid-Atlantic Twin Registry, revisited.

    PubMed

    Lilley, Emily C H; Silberg, Judy L

    2013-02-01

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

  20. 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

  1. 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.

  2. Agency for Toxic Substances and Disease Registry

    MedlinePlus

    ... fact sheet. Hexachlorobenzene Learn important information about Hexachlorobenzene. ALS Registry 7th Anniversary Read how the Registry has been working to better understand ALS for 7 years now. Protect the Health of ...

  3. Data Quality in Rare Diseases Registries.

    PubMed

    Kodra, Yllka; Posada de la Paz, Manuel; Coi, Alessio; Santoro, Michele; Bianchi, Fabrizio; Ahmed, Faisal; Rubinstein, Yaffa R; Weinbach, Jérôme; Taruscio, Domenica

    2017-01-01

    In the field of rare diseases, registries are considered power tool to develop clinical research, to facilitate the planning of appropriate clinical trials, to improve patient care and healthcare planning. Therefore high quality data of rare diseases registries is considered to be one of the most important element in the establishment and maintenance of a registry. Data quality can be defined as the totality of features and characteristics of data set that bear on its ability to satisfy the needs that result from the intended use of the data. In the context of registries, the 'product' is data, and quality refers to data quality, meaning that the data coming into the registry have been validated, and ready for use for analysis and research. Determining the quality of data is possible through data assessment against a number of dimensions: completeness, validity; coherence and comparability; accessibility; usefulness; timeliness; prevention of duplicate records. Many others factors may influence the quality of a registry: development of standardized Case Report Form and security/safety controls of informatics infrastructure. With the growing number of rare diseases registries being established, there is a need to develop a quality validation process to evaluate the quality of each registry. A clear description of the registry is the first step when assessing data quality or the registry evaluation system. Here we report a template as a guide for helping registry owners to describe their registry.

  4. 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 winery...

  5. 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 winery...

  6. 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 winery...

  7. Review article: Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region?

    PubMed

    Lim, Teck-Onn; Goh, Adrian; Lim, Yam-Ngo; Morad, Zaki

    2008-12-01

    We review renal registry data from the Asia-Pacific region with an emphasis on their uses in health care and in dialysis care in particular. The review aims to demonstrate the information value of registry data. While renal registry provides a useful data resource for epidemiological research, there are severe methodological limitations in its application for analytical or therapeutic research. However, it is the use of renal registry data for public health and health-care management purposes that registry really comes into its own, and it is primarily for these that governments have invested in national patient and disease registries. We apply data from several renal registries in the Asia-Pacific region to illustrate its wide application for planning dialysis services, for evaluating dialysis practices and health outcomes, with a view to improving the quality of dialysis care. In the course of preparing the review, we have found that the quality and accessibility of renal registry data were highly variable across the region. Given the value of renal registry, every country in the Asia-Pacific region should establish one or should ensure that their current registries are better resourced and developed. Greater data sharing and collaboration among registries in the region could help advance the nephrology to serve our patients better.

  8. The New ADL Registry. ADL Registry Web Portal Changes

    DTIC Science & Technology

    2009-08-19

    Questions or Comments? Jason Haag Learning Technology Analyst jason.haag.ctr@adlnet.gov +1.850.471.1300 ...PERFORMING ORGANIZATION NAME(S) AND ADDRESS(ES) Advanced Decision Learning (ADL),Joint ADL Co-Lab,13501 Ingenuity Drive Suite 248,Orlando,FL,32826 8... Technologies /adlr/  News and Announcements  Frequently Asked Questions (FAQ)  Documentation  Events and Event Registration 4 ADL Registry Functional

  9. Metacognition and abstract reasoning.

    PubMed

    Markovits, Henry; Thompson, Valerie A; Brisson, Janie

    2015-05-01

    The nature of people's meta-representations of deductive reasoning is critical to understanding how people control their own reasoning processes. We conducted two studies to examine whether people have a metacognitive representation of abstract validity and whether familiarity alone acts as a separate metacognitive cue. In Study 1, participants were asked to make a series of (1) abstract conditional inferences, (2) concrete conditional inferences with premises having many potential alternative antecedents and thus specifically conducive to the production of responses consistent with conditional logic, or (3) concrete problems with premises having relatively few potential alternative antecedents. Participants gave confidence ratings after each inference. Results show that confidence ratings were positively correlated with logical performance on abstract problems and concrete problems with many potential alternatives, but not with concrete problems with content less conducive to normative responses. Confidence ratings were higher with few alternatives than for abstract content. Study 2 used a generation of contrary-to-fact alternatives task to improve levels of abstract logical performance. The resulting increase in logical performance was mirrored by increases in mean confidence ratings. Results provide evidence for a metacognitive representation based on logical validity, and show that familiarity acts as a separate metacognitive cue.

  10. Quality of trauma care and trauma registries.

    PubMed

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

    2015-03-01

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

  11. Thyra Abstract Interface Package

    SciTech Connect

    Bartlett, Roscoe A.

    2005-09-01

    Thrya primarily defines a set of abstract C++ class interfaces needed for the development of abstract numerical atgorithms (ANAs) such as iterative linear solvers, transient solvers all the way up to optimization. At the foundation of these interfaces are abstract C++ classes for vectors, vector spaces, linear operators and multi-vectors. Also included in the Thyra package is C++ code for creating concrete vector, vector space, linear operator, and multi-vector subclasses as well as other utilities to aid in the development of ANAs. Currently, very general and efficient concrete subclass implementations exist for serial and SPMD in-core vectors and multi-vectors. Codemore » also currently exists for testing objects and providing composite objects such as product vectors.« less

  12. Primary Healthcare-based Diabetes Registry in Puducherry: Design and Methods

    PubMed Central

    Lakshminarayanan, Subitha; Kar, Sitanshu Sekhar; Gupta, Rajeev; Xavier, Denis; Bhaskar Reddy, S. Vijaya

    2017-01-01

    Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry. PMID:28553589

  13. Quality of data collected for severity of illness scores in the Dutch National Intensive Care Evaluation (NICE) registry.

    PubMed

    Arts, Daniëlle; de Keizer, Nicolette; Scheffer, Gert-Jan; de Jonge, Evert

    2002-05-01

    To analyse the quality of data used to measure severity of illness in the Dutch National Intensive Care Evaluation (NICE) registry, after implementation of quality improving procedures. Data were re-abstracted from the paper records of patients or the Patient Data Management System and compared to the data contained in the registry. The re-abstracted data were considered to be the gold standard. ICUs of nine Dutch hospitals that had been collecting data for the NICE registry for at least 1 year. The mean percentages of inaccurate and incomplete data, per hospital, over all variables, were 6.1%+/-4.4 (SD) and 2.7%+/-4.4 (SD), respectively. The mean difference in severity of illness scores between registry data and re-abstracted data was 0.2 points for APACHE II and 0.4 points for SAPS II. The mean difference in predicted mortality according to APACHE II and SAPS II between registry data and re-abstracted data was 0.4% and 0.02%, respectively. The current data quality of the NICE registry is good and justifies evaluative research. These positive results might be explained by the implementation of several quality assurance procedures in the NICE registry, such as training and automatic data checks. Electronic supplementary material to this paper can be obtained by using the Springer LINK server located at http://dx.doi.org/10.1007/s00134-002-1272-z

  14. Rare disease registries: a call to action.

    PubMed

    Lacaze, Paul; Millis, Nicole; Fookes, Megan; Zurynski, Yvonne; Jaffe, Adam; Bellgard, Matthew; Winship, Ingrid; McNeil, John; Bittles, Alan H

    2017-09-01

    When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This 'umbrella' organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD. © 2017 Royal Australasian College of Physicians.

  15. CIRSE Vascular Closure Device Registry

    SciTech Connect

    Reekers, Jim A., E-mail: j.a.reekers@amc.uva.nl; Mueller-Huelsbeck, Stefan; Libicher, Martin

    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 (Pmore » = 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.« less

  16. 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.

  17. Parent Education: Abstract Bibliography.

    ERIC Educational Resources Information Center

    Kremer, Barbara, Comp.

    This bibliography has been compiled to alert educators to parent education documents found in the ERIC microfiche collection and in journal literature. Abstracts of selected documents have been taken from "Research in Education (RIE)", and journal article citations from the "Current Index to Journals in Education (CIJE)". Included are published…

  18. Making the Abstract Concrete

    ERIC Educational Resources Information Center

    Potter, Lee Ann

    2005-01-01

    President Ronald Reagan nominated a woman to serve on the United States Supreme Court. He did so through a single-page form letter, completed in part by hand and in part by typewriter, announcing Sandra Day O'Connor as his nominee. While the document serves as evidence of a historic event, it is also a tangible illustration of abstract concepts…

  19. Send Me No Abstract.

    ERIC Educational Resources Information Center

    Levy, Steven

    1985-01-01

    Discusses Magazine Index's practice of assigning letter grades (sometimes inaccurate) to book, restaurant, and movie reviews, thus allowing patrons to get the point of the review from the index rather than the article itself, and argues that this situation is indicative of the larger problem of reliability of abstracts. (MBR)

  20. Children and Computers Abstracts.

    ERIC Educational Resources Information Center

    Rothenberg, Dianne, Ed.

    1992-01-01

    Abstracts of reports of eight research studies on computer uses in children's education are presented. Topics covered include (1) LOGO computer language; (2) computer graphics for art instruction; (3) animation; (4) problem solving; (5) children's use of symbols; (6) an evaluation of a Chapter 1 program involving children's computer use; (7) peer…

  1. Abstract Film and Beyond.

    ERIC Educational Resources Information Center

    Le Grice, Malcolm

    A theoretical and historical account of the main preoccupations of makers of abstract films is presented in this book. The book's scope includes discussion of nonrepresentational forms as well as examination of experiments in the manipulation of time in films. The ten chapters discuss the following topics: art and cinematography, the first…

  2. Abstraction through Game Play

    ERIC Educational Resources Information Center

    Avraamidou, Antri; Monaghan, John; Walker, Aisha

    2012-01-01

    This paper examines the computer game play of an 11-year-old boy. In the course of building a virtual house he developed and used, without assistance, an artefact and an accompanying strategy to ensure that his house was symmetric. We argue that the creation and use of this artefact-strategy is a mathematical abstraction. The discussion…

  3. Composing Interfering Abstract Protocols

    DTIC Science & Technology

    2016-04-01

    Tecnologia , Universidade Nova de Lisboa, Caparica, Portugal. This document is a companion technical report of the paper, “Composing Interfering Abstract...a Ciência e Tecnologia (Portuguese Foundation for Science and Technology) through the Carnegie Mellon Portugal Program under grant SFRH / BD / 33765

  4. Abstraction and art.

    PubMed Central

    Gortais, Bernard

    2003-01-01

    In a given social context, artistic creation comprises a set of processes, which relate to the activity of the artist and the activity of the spectator. Through these processes we see and understand that the world is vaster than it is said to be. Artistic processes are mediated experiences that open up the world. A successful work of art expresses a reality beyond actual reality: it suggests an unknown world using the means and the signs of the known world. Artistic practices incorporate the means of creation developed by science and technology and change forms as they change. Artists and the public follow different processes of abstraction at different levels, in the definition of the means of creation, of representation and of perception of a work of art. This paper examines how the processes of abstraction are used within the framework of the visual arts and abstract painting, which appeared during a period of growing importance for the processes of abstraction in science and technology, at the beginning of the twentieth century. The development of digital platforms and new man-machine interfaces allow multimedia creations. This is performed under the constraint of phases of multidisciplinary conceptualization using generic representation languages, which tend to abolish traditional frontiers between the arts: visual arts, drama, dance and music. PMID:12903659

  5. Annual Conference Abstracts

    ERIC Educational Resources Information Center

    Engineering Education, 1976

    1976-01-01

    Presents the abstracts of 158 papers presented at the American Society for Engineering Education's annual conference at Knoxville, Tennessee, June 14-17, 1976. Included are engineering topics covering education, aerospace, agriculture, biomedicine, chemistry, computers, electricity, acoustics, environment, mechanics, and women. (SL)

  6. Annual Conference Abstracts

    ERIC Educational Resources Information Center

    Journal of Engineering Education, 1972

    1972-01-01

    Includes abstracts of papers presented at the 80th Annual Conference of the American Society for Engineering Education. The broad areas include aerospace, affiliate and associate member council, agricultural engineering, biomedical engineering, continuing engineering studies, chemical engineering, civil engineering, computers, cooperative…

  7. Conference Abstracts: AEDS '84.

    ERIC Educational Resources Information Center

    Baird, William E.

    1985-01-01

    The Association of Educational Data Systems (AEDS) conference included 102 presentations. Abstracts of seven of these presentations are provided. Topic areas considered include LOGO, teaching probability through a computer game, writing effective computer assisted instructional materials, computer literacy, research on instructional…

  8. Leadership Abstracts, 1993.

    ERIC Educational Resources Information Center

    Doucette, Don, Ed.

    1993-01-01

    This document includes 10 issues of Leadership Abstracts (volume 6, 1993), a newsletter published by the League for Innovation in the Community College (California). The featured articles are: (1) "Reinventing Government" by David T. Osborne; (2) "Community College Workforce Training Programs: Expanding the Mission to Meet Critical Needs" by…

  9. Abstracts of SIG Sessions.

    ERIC Educational Resources Information Center

    Proceedings of the ASIS Annual Meeting, 1994

    1994-01-01

    Includes abstracts of 18 special interest group (SIG) sessions. Highlights include natural language processing, information science and terminology science, classification, knowledge-intensive information systems, information value and ownership issues, economics and theories of information science, information retrieval interfaces, fuzzy thinking…

  10. Abstracts of SIG Sessions.

    ERIC Educational Resources Information Center

    Proceedings of the ASIS Annual Meeting, 1993

    1993-01-01

    Presents abstracts of 34 special interest group (SIG) sessions. Highlights include humanities scholars and electronic texts; information retrieval and indexing systems design; automated indexing; domain analysis; query expansion in document retrieval systems; thesauri; business intelligence; Americans with Disabilities Act; management;…

  11. Poster Session- Extended Abstracts

    Treesearch

    Jack D. Alexander III; Jean Findley; Brenda K. Kury; Jan L. Beyers; Douglas S. Cram; Terrell T. Baker; Jon C. Boren; Carl Edminster; Sue A. Ferguson; Steven McKay; David Nagel; Trent Piepho; Miriam Rorig; Casey Anderson; Jeanne Hoadley; Paulette L. Ford; Mark C. Andersen; Ed L. Fredrickson; Joe Truett; Gary W. Roemer; Brenda K. Kury; Jennifer Vollmer; Christine L. May; Danny C. Lee; James P. Menakis; Robert E. Keane; Zhi-Liang Zhu; Carol Miller; Brett Davis; Katharine Gray; Ken Mix; William P. Kuvlesky Jr.; D. Lynn Drawe; Marcia G. Narog; Roger D. Ottmar; Robert E. Vihnanek; Clinton S. Wright; Timothy E. Paysen; Burton K. Pendleton; Rosemary L. Pendleton; Carleton S. White; John Rogan; Doug Stow; Janet Franklin; Jennifer Miller; Lisa Levien; Chris Fischer; Emma Underwood; Robert Klinger; Peggy Moore; Clinton S. Wright

    2008-01-01

    Titles found within Poster Session-Extended Abstracts include:Assessment of emergency fire rehabilitation of four fires from the 2000 fire season on the Vale, Oregon, BLM district: review of the density sampling materials and methods: p. 329 Growth of regreen, seeded for erosion control, in the...

  12. Reasoning abstractly about resources

    NASA Technical Reports Server (NTRS)

    Clement, B.; Barrett, A.

    2001-01-01

    r describes a way to schedule high level activities before distributing them across multiple rovers in order to coordinate the resultant use of shared resources regardless of how each rover decides how to perform its activities. We present an algorithm for summarizing the metric resource requirements of an abstract activity based n the resource usages of its potential refinements.

  13. Abstraction and art.

    PubMed

    Gortais, Bernard

    2003-07-29

    In a given social context, artistic creation comprises a set of processes, which relate to the activity of the artist and the activity of the spectator. Through these processes we see and understand that the world is vaster than it is said to be. Artistic processes are mediated experiences that open up the world. A successful work of art expresses a reality beyond actual reality: it suggests an unknown world using the means and the signs of the known world. Artistic practices incorporate the means of creation developed by science and technology and change forms as they change. Artists and the public follow different processes of abstraction at different levels, in the definition of the means of creation, of representation and of perception of a work of art. This paper examines how the processes of abstraction are used within the framework of the visual arts and abstract painting, which appeared during a period of growing importance for the processes of abstraction in science and technology, at the beginning of the twentieth century. The development of digital platforms and new man-machine interfaces allow multimedia creations. This is performed under the constraint of phases of multidisciplinary conceptualization using generic representation languages, which tend to abolish traditional frontiers between the arts: visual arts, drama, dance and music.

  14. Leadership Abstracts, 2001.

    ERIC Educational Resources Information Center

    Wilson, Cynthia, Ed.

    2001-01-01

    This is volume 14 of Leadership Abstracts, a newsletter published by the League for Innovation (California). Issue 1 of February 2001, "Developmental Education: A Policy Primer," discusses developmental programs in the community college. According to the article, community college trustees and presidents would serve their constituents well by…

  15. 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. PMID:27325958

  16. 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

  17. Generalized Abstract Symbolic Summaries

    NASA Technical Reports Server (NTRS)

    Person, Suzette; Dwyer, Matthew B.

    2009-01-01

    Current techniques for validating and verifying program changes often consider the entire program, even for small changes, leading to enormous V&V costs over a program s lifetime. This is due, in large part, to the use of syntactic program techniques which are necessarily imprecise. Building on recent advances in symbolic execution of heap manipulating programs, in this paper, we develop techniques for performing abstract semantic differencing of program behaviors that offer the potential for improved precision.

  18. Research Abstracts of 1981.

    DTIC Science & Technology

    1981-12-01

    Development in Initally Caries-Free Naval Recruits" (Abstract #898) , 13. M. R. WIRTHLIN* and E. B. HANCOCK - " Regeneration After Biologic Treat- ment of...These variables can be grouped into four categories: oral condition (N-7), clinical attendance (N=4), personal characteristics (N=4), and record...Histologic examination of the pulp tissue in these teeth were related to the clinical criteria prior to extraction. Clinical criteria associated

  19. Abstract shapes of RNA.

    PubMed

    Giegerich, Robert; Voss, Björn; Rehmsmeier, Marc

    2004-01-01

    The function of a non-protein-coding RNA is often determined by its structure. Since experimental determination of RNA structure is time-consuming and expensive, its computational prediction is of great interest, and efficient solutions based on thermodynamic parameters are known. Frequently, however, the predicted minimum free energy structures are not the native ones, leading to the necessity of generating suboptimal solutions. While this can be accomplished by a number of programs, the user is often confronted with large outputs of similar structures, although he or she is interested in structures with more fundamental differences, or, in other words, with different abstract shapes. Here, we formalize the concept of abstract shapes and introduce their efficient computation. Each shape of an RNA molecule comprises a class of similar structures and has a representative structure of minimal free energy within the class. Shape analysis is implemented in the program RNAshapes. We applied RNAshapes to the prediction of optimal and suboptimal abstract shapes of several RNAs. For a given energy range, the number of shapes is considerably smaller than the number of structures, and in all cases, the native structures were among the top shape representatives. This demonstrates that the researcher can quickly focus on the structures of interest, without processing up to thousands of near-optimal solutions. We complement this study with a large-scale analysis of the growth behaviour of structure and shape spaces. RNAshapes is available for download and as an online version on the Bielefeld Bioinformatics Server.

  20. The Parkinsons Registry Investigation of Diagnosis and Etiology (PRIDE) Study

    DTIC Science & Technology

    2016-04-01

    Committee for the Protection of Human Subjects (CPHS) through the State of California Health and Human Services Agency on 20-June-2011 as a minimal... pesticides , solvents or traumatic brain injury increase PD risk. This study takes advantage of the population-based PD registry in Santa Clara County...related morbidity and mortality are greater in persons exposed to pesticides , solvents, PCBs, and air pollutants. In addition, we will conduct a case

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

    PubMed Central

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

    2016-01-01

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

  2. CIRSE Vascular Closure Device Registry

    PubMed Central

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

    2010-01-01

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

  3. Mathematical Abstraction: Constructing Concept of Parallel Coordinates

    NASA Astrophysics Data System (ADS)

    Nurhasanah, F.; Kusumah, Y. S.; Sabandar, J.; Suryadi, D.

    2017-09-01

    Mathematical abstraction is an important process in teaching and learning mathematics so pre-service mathematics teachers need to understand and experience this process. One of the theoretical-methodological frameworks for studying this process is Abstraction in Context (AiC). Based on this framework, abstraction process comprises of observable epistemic actions, Recognition, Building-With, Construction, and Consolidation called as RBC + C model. This study investigates and analyzes how pre-service mathematics teachers constructed and consolidated concept of Parallel Coordinates in a group discussion. It uses AiC framework for analyzing mathematical abstraction of a group of pre-service teachers consisted of four students in learning Parallel Coordinates concepts. The data were collected through video recording, students’ worksheet, test, and field notes. The result shows that the students’ prior knowledge related to concept of the Cartesian coordinate has significant role in the process of constructing Parallel Coordinates concept as a new knowledge. The consolidation process is influenced by the social interaction between group members. The abstraction process taken place in this group were dominated by empirical abstraction that emphasizes on the aspect of identifying characteristic of manipulated or imagined object during the process of recognizing and building-with.

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

    PubMed Central

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

    2015-01-01

    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

  5. Research Abstracts of 1980.

    DTIC Science & Technology

    1980-12-01

    ABSTRACTS OF 1980. 9 - DTIC ELECTEf ii S AN3O 1981j _NAVAL DISTRIBUTION SMT:MIT DENTAL RESEARCH Approved for PUbDiC T INSTITE iii~2 YA3 It81 Naval...Medical Research apd Development Command 30 £ Bethesda, Maryland ( *- i - NTIS - GRA&I DTIC TAB - Urrannouneed NAVAL DENTAL RESEARCH INSTITUTE...r1 w American Assoctat/ion for Dental Research, 58th Annual Session, Los Angeles, California, March 20-23, 1980. 1. AV6ERSON*, D. N., LANGELAND, K

  6. Research Abstracts of 1979.

    DTIC Science & Technology

    1979-12-01

    7 AD-AO82 309 NAVAL DENTAL RESEARCH INST GREAT LAKES IL F/6 6/9 RESCH ABTAT79 991 UNCLASSIFIED NORI-PR-79-11 NL ’NDRI-PR 79-11 December 1979...RESEARCH ABSTRACTS OF 1979 OTICSELZCreD MAR 2?718 S A NAVAL DENTAL RESEARCH INSTITUTE Naval Medical Research and Development Command Bethesda, Maryland...8G 3 23 O4ൌ p.,. ... ....-- - I -- - ’.... .I l l ---,, .. . = ., , ." .;’.- I 1 IV NAVAL DENTAL RESEARCH INSTITUTE NAVAL BASE, BLDG. I-H GREAT LAKES

  7. eXtended MetaData Registry

    SciTech Connect

    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.

  8. [Survey on computerized immunization registries in Italy].

    PubMed

    Alfonsi, V; D'Ancona, F; Ciofi degli Atti, M L

    2008-01-01

    Computerized immunization registries are essential for conducting and monitoring vaccination programs. In fact, they enable to improve vaccine offering to target population, generating needed-immunization lists and assessing levels of vaccination coverage. In 2007, a national survey on immunization registries was conducted in Italy. In February 2007, all the 21 Regional Health Authorities (RHAs) completed and returned an ad hoc questionnaire. In June 2007, RHAs were further contacted by telephone in order to verify and update the information provided in questionnaires. In 9 Italian Regions (42.8%), vaccination registries are computerized in all Local Health Units (LHUs). In five of these Regions, all LHUs use the same software, while in the remaining four Regions, different softwares are in use. In six additional Regions (28.6%), only some LHUs use computerized immunization registries (range 61.5%-95%). In the remaining 6 Regions (28.6%), which are all in Southern Italy, there are no computerised immunization registries at all. In total, computerised immunization registries cover 126/180 Italian LHUs (70%); in 76/126 (60%) of these LUHs, immunization registries are linked with population registries. This survey shows the need to improve the implementation of computerised immunization registries in Italy, especially in Southern Regions.

  9. Immunization registries in the EMR Era

    PubMed Central

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

    2013-01-01

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

  10. 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).

  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. National Suicide Registry Malaysia (NSRM).

    PubMed

    Hayati, A N; Kamarul, A K

    2008-09-01

    To create a nationwide system to capture data on completed suicide in Malaysia i.e. the morbidity, geographic and temporal trends and the population at high risk of suicide. Data from this registry can later be used to stimulate and facilitate further research on suicide. This paper describes the rationale and processes involved in developing a national suicide registry in 2007. The diagnosis of suicide is based on the ICD-10 codes for fatal intentional self-harm (X60-X84). A case report form with an accompanying instruction manual had been prepared to ensure systematic and uniform data collection. State Forensic Pathologist's offices are responsible for data collection in their respective states, and in turn will submit the data to a central data management unit. Data collection began in July 2007 and currently in data cleaning process. Training for source data producers is ongoing. In 2008, the NSRM plans to involve university hospitals into its network as currently only Ministry of Health hospitals are involved. The NSRM will be launching its online application for case registration this year while an overview of results will be available via its public domain at www.nsrm.gov.my beginning 20 April 2008. To efficiently capture the data on suicide, a concerted effort between various agencies is needed. A lot of conceptual work and data base development remains to be done in order to position preventive efforts on a more solid foundation.

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

    PubMed

    Linkins, Robert W; Salmon, Daniel A; Omer, Saad B; Pan, William Ky; Stokley, Shannon; Halsey, Neal A

    2006-09-22

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

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

    PubMed Central

    Linkins, Robert W; Salmon, Daniel A; Omer, Saad B; Pan, William KY; Stokley, Shannon; Halsey, Neal A

    2006-01-01

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

  15. Private provider participation in statewide immunization registries

    PubMed Central

    Clark, Sarah J; Cowan, Anne E; Bartlett, Diana L

    2006-01-01

    Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756). Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68%) and printable immunization records (N = 82, 55%) were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38%) and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%). Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87%) and to review immunization records of individual patients (N = 302, 81%). A minority reported using it to assess their practice's immunization coverage (N = 110, 29%) or generate reminder/recall notices (N = 54, 14%). Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%). Conclusion Most registry participants report active participation with few problems. The

  16. 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…

  17. Automated Tumor Registry for Oncology. A VA-DHCP MUMPS application.

    PubMed Central

    Richie, S.

    1992-01-01

    The VA Automated Tumor Registry for Oncology, Version 2, is a multifaceted, completely automated user-friendly cancer database. Easy to use modules include: Automatic Casefinding; Suspense Files; Abstracting and Printing; Follow-up; Annual Reports; Statistical Reports; Utility Functions. PMID:1482866

  18. Great Valley Riparian Habitats and the National Registry of Natural Landmarks

    Treesearch

    Robert F. Holland; Cynthia L. Roye

    1989-01-01

    The National Registry of Natural Landmarks is a program established by the National Park Service that seeks to recognize nationally significant examples of the Nation's natural history. Nearly 100 Great Valley riparian sites were evaluated using Park Service criteria. Three sites illustrative of the range of this biotic theme were recommended to the National Park...

  19. Journal article overlap among Index Medicus, Science Citation Index, Biological Abstracts, and Chemical Abstracts.

    PubMed Central

    Poyer, R K

    1984-01-01

    Journal article overlap is defined as the same journal article being indexed by two or more services. Using journal references from seventy dissertations written in the preclinical sciences, the extent of journal article overlap among Index Medicus, Science Citation Index, Biological Abstracts, and Chemical Abstracts was examined. Of the 7,969 journal references cited, 92% were indexed by at least two of these services; 591 articles were covered by only one of the services, and 55 articles were not indexed. A discussion of the advantages and costs of journal article overlap is presented. PMID:6388693

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

    PubMed

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

    2017-06-07

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

  1. Airborne Hazards and Open Burn Pit Registry

    MedlinePlus

    ... Burn Pit Registry requires a common web browser technology to guide you through the registry questionnaire. You may try a different browser, or you may try from a different computer. You may also see this problem if you are in a high security environment where this is disabled by a network policy. ...

  2. Frequent Questions about the Manifest Registry

    EPA Pesticide Factsheets

    FAQs Including Can I submit multiple form samples to the EPA Registry for approval? Must I submit a continuation sheet sample to the Manifest Registry under section 262.21(d)? Can I typeset the form after I am approved to print the manifest?

  3. 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 FAA...

  4. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 1 2012-01-01 2012-01-01 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 FAA...

  5. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 1 2013-01-01 2013-01-01 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 FAA...

  6. 14 CFR 47.19 - Registry.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 1 2011-01-01 2011-01-01 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 FAA...

  7. 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

  8. Exoplanets and Multiverses (Abstract)

    NASA Astrophysics Data System (ADS)

    Trimble, V.

    2016-12-01

    (Abstract only) To the ancients, the Earth was the Universe, of a size to be crossed by a god in a day, by boat or chariot, and by humans in a lifetime. Thus an exoplanet would have been a multiverse. The ideas gradually separated over centuries, with gradual acceptance of a sun-centered solar system, the stars as suns likely to have their own planets, other galaxies beyond the Milky Way, and so forth. And whenever the community divided between "just one' of anything versus "many," the "manies" have won. Discoveries beginning in 1991 and 1995 have gradually led to a battalion or two of planets orbiting other stars, very few like our own little family, and to moderately serious consideration of even larger numbers of other universes, again very few like our own. I'm betting, however, on habitable (though not necessarily inhabited) exoplanets to be found, and habitable (though again not necessarily inhabited) universes. Only the former will yield pretty pictures.

  9. Stellar Presentations (Abstract)

    NASA Astrophysics Data System (ADS)

    Young, D.

    2015-12-01

    (Abstract only) The AAVSO is in the process of expanding its education, outreach and speakers bureau program. powerpoint presentations prepared for specific target audiences such as AAVSO members, educators, students, the general public, and Science Olympiad teams, coaches, event supervisors, and state directors will be available online for members to use. The presentations range from specific and general content relating to stellar evolution and variable stars to specific activities for a workshop environment. A presentation—even with a general topic—that works for high school students will not work for educators, Science Olympiad teams, or the general public. Each audience is unique and requires a different approach. The current environment necessitates presentations that are captivating for a younger generation that is embedded in a highly visual and sound-bite world of social media, twitter and U-Tube, and mobile devices. For educators, presentations and workshops for themselves and their students must support the Next Generation Science Standards (NGSS), the Common Core Content Standards, and the Science Technology, Engineering and Mathematics (STEM) initiative. Current best practices for developing relevant and engaging powerpoint presentations to deliver information to a variety of targeted audiences will be presented along with several examples.

  10. Clinical disease registries in acute myocardial infarction.

    PubMed

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

    2014-06-26

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

  11. Considerations Before Establishing an Environmental Health Registry

    PubMed Central

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

    2015-01-01

    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

  12. EPA Facility Registry System (FRS): NCES

    EPA Pesticide Factsheets

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

  13. Pre-hospital electrocardiogram triage with tele-cardiology support is associated with shorter time-to-balloon and higher rates of timely reperfusion even in rural areas: data from the Bari- Barletta/Andria/Trani public emergency medical service 118 registry on primary angioplasty in ST-elevation myocardial infarction.

    PubMed

    Brunetti, Natale Daniele; Di Pietro, Gaetano; Aquilino, Ambrogio; Bruno, Angela I; Dellegrottaglie, Giulia; Di Giuseppe, Giuseppe; Lopriore, Claudio; De Gennaro, Luisa; Lanzone, Saverio; Caldarola, Pasquale; Antonelli, Gianfranco; Di Biase, Matteo

    2014-09-01

    We report the preliminary data from a regional registry on ST-elevation myocardial infarction (STEMI) patients treated with primary angioplasty in Apulia, Italy; the region is covered by a single public health-care service, a single public emergency medical service (EMS), and a single tele-medicine service provider. Two hundred and ninety-seven consecutive patients with STEMI transferred by regional free public EMS 1-1-8 for primary-PCI were enrolled in the study; 123 underwent pre-hospital electrocardiograms (ECGs) triage by tele-cardiology support and directly referred for primary-PCI, those remaining were just transferred by 1-1-8 ambulances for primary percutaneous coronary intervention (PCI) (diagnosis not based on tele-medicine ECG; already hospitalised patients, emergency-room without tele-medicine support). Time from first ECG diagnostic for STEMI to balloon was recorded; a time-to-balloon <1 h was considered as optimal and patients as timely treated. Mean time-to-balloon with pre-hospital triage and tele-cardiology ECG was significantly shorter (0:41 ± 0:17 vs 1:34 ± 1:11 h, p<0.001, -0:53 h, -56%) and rates of patients timely treated higher (85% vs 35%, p<0.001, +141%), both in patients from the 'inner' zone closer to PCI catheterisation laboratories (0:34 ± 0:13 vs 0:54 ± 0:30 h, p<0.001; 96% vs 77%, p<0.01, +30%) and in the 'outer' zone (0:52 ± 0:17 vs 1:41 ± 1:14 h, p<0.001; 69% vs 29%, p<0.001, +138%). Results remained significant even after multivariable analysis (odds ratio for time-to-balloon 0.71, 95% confidence interval (CI) 0.63-0.80, p<0.001; 1.39, 95% CI 1.25-1.55, p<0.001, for timely primary-PCI). Pre-hospital triage with tele-cardiology ECG in an EMS registry from an area with more than one and a half million inhabitants was associated with shorter time-to-balloon and higher rates of timely treated patients, even in 'rural' areas. © The European Society of Cardiology 2014.

  14. Maternal occupation and risk for low birth weight delivery: assessment using state birth registry data.

    PubMed

    Meyer, John D; Nichols, Ginger H; Warren, Nicholas; Reisine, Susan

    2008-03-01

    To determine the effects of employment on low birth weight (LBW) in a service-based economy, we evaluated the association of LBW delivery with occupational data collected in a state birth registry. Occupational data in the 2000 Connecticut birth registry were coded for 41,009 singleton births. Associations between employment and LBW delivery were analyzed using logistic regression controlling for covariates in the registry data set. Evidence for improved LBW outcomes in working mothers did not persist when adjusted for maternal covariates. Among working mothers, elevated risk of LBW was seen in textile, food service, personal appearance, material dispatching or distributing, and retail sales workers. Improved overall birth outcomes seen in working mothers may arise from favorable demographic and health attributes. Higher LBW risk was seen in several types of service sector jobs and in textile work.

  15. 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.

  16. 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

  17. Factors facilitating a national quality registry to aid clinical quality improvement: findings of a national survey.

    PubMed

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

    2016-11-09

    While national quality registries (NQRs) are suggested to provide opportunities for systematic follow-up and learning opportunities, and thus clinical improvements, features in registries and contexts triggering such processes are not fully known. This study focuses on one of the world's largest stroke registries, the Swedish NQR Riksstroke, investigating what aspects of the registry and healthcare organisations facilitate or hinder the use of registry data in clinical quality improvement. Following particular qualitative studies, we performed a quantitative survey in an exploratory sequential design. The survey, including 50 items on context, processes and the registry, was sent to managers, physicians and nurses engaged in Riksstroke in all 72 Swedish stroke units. Altogether, 242 individuals were presented with the survey; 163 responded, representing all but two units. Data were analysed descriptively and through multiple linear regression. A majority (88%) considered Riksstroke data to facilitate detection of stroke care improvement needs and acknowledged that their data motivated quality improvements (78%). The use of Riksstroke for quality improvement initiatives was associated (R 2 =0.76) with 'Colleagues' call for local results' (p=<0.001), 'Management Request of Registry data' (p=<0.001), and it was said to be 'Simple to explain the results to colleagues' (p=0.02). Using stepwise regression, 'Colleagues' call for local results' was identified as the most influential factor. Yet, while 73% reported that managers request registry data, only 39% reported that their colleagues call for the unit's Riksstroke results. While an NQR like Riksstroke demonstrates improvement needs and motivates stakeholders to make progress, local stroke care staff and managers need to engage to keep the momentum going in terms of applying registry data when planning, performing and evaluating quality initiatives. Published by the BMJ Publishing Group Limited. For permission to use

  18. A brief review of vaccination coverage in immunization registries.

    PubMed

    Goldstein, Neal D; Maiese, Brett A

    2011-01-01

    Immunization registries are effective electronic tools for assessing vaccination coverage, but are only as good as the information reported to them. This review summarizes studies through August 2010 on vaccination coverage in registries and identifies key characteristics of successful registries. Based on the current state of registries, paper-based charts combined with electronic registry reporting provide the most cohesive picture of coverage. To ultimately supplant paper charts, registries must exhibit increased coverage and participation.

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

    PubMed

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

    2017-05-01

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

  20. Online access to journal abstracts and articles.

    PubMed

    Giedd, J N; Smith, K G

    1997-01-01

    Advances in information technology now offer several options for child and adolescent psychopharmacologists to navigate the increasingly complex terrain of scientific literature and keep abreast of the rapidly changing advances in our field. MEDLINE, the world's largest database of medical literature, can be accessed and searched by a variety of free or fee-based services. In addition to efficient retrieval of citations and abstracts based on subject, author, or title, many of these services now provide, for a fee, the entire text and graphics of articles (displayed on computer screen, faxed, or mailed). There are also current awareness services to alert the user when new requested literature become available as well as services to send via e-mail the tables of contents of requested journals (sometimes prior to paper publication). For online citation and abstract retrieval, we found that free services, such as PubMed, performed as good or better than fee-based services. Physicians' Online, sponsored by the pharmaceutical industry, offered the lowest price for full-text manuscript delivery. In this article, we review literature search, delivery, and update services and offer some tips on how to most effectively use these resources.

  1. 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

  2. Advance Organizers: Concret Versus Abstract.

    ERIC Educational Resources Information Center

    Corkill, Alice J.; And Others

    1988-01-01

    Two experiments examined the relative effects of concrete and abstract advance organizers on students' memory for subsequent prose. Results of the experiments are discussed in terms of the memorability, familiarity, and visualizability of concrete and abstract verbal materials. (JD)

  3. Abstraction Techniques for Parameterized Verification

    DTIC Science & Technology

    2006-11-01

    approach for applying model checking to unbounded systems is to extract finite state models from them using conservative abstraction techniques. Prop...36 2.5.1 Multiple Reference Processes . . . . . . . . . . . . . . . . . . . 36 2.5.2 Adding Monitor Processes...model checking to complex pieces of code like device drivers depends on the use of abstraction methods. An abstraction method extracts a small finite

  4. Services

    Science.gov Websites

    Content Assistance Services Adult Public Assistance 888-804-6330 Child Care 888-268-4632 Chronic and Acute Cancer 800-410-6266 Fetal Alcohol Syndrome 877-393-2287 Family Planning Genetic and Pediatric Specialty

  5. [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.

  6. 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.

  7. Occupational Disease Registries-Characteristics and Experiences.

    PubMed

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

    2017-06-01

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

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

    PubMed

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

    2017-01-01

    (a) real-time patient lists of registry patients and (b) EDW-gener-ated CQM data. Agile project management methods were employed, including co-development, lightweight requirements documentation with User Stories and acceptance criteria, and time-boxed iterative development of EHR features in 2-week "sprints" for rapid-cycle feedback and refinement. Using this approach, in calendar year 2015 we developed a total of 43 specialty chronic disease registries, with 111 new EHR data collection and clinical decision support tools, 163 new clinical quality measures, and 30 clinic-specific dashboards reporting on both real-time patient care gaps and summarized and vetted CQM measure performance trends. This study suggests concurrent design of EHR data collection tools and reporting can quickly yield useful EHR structured data for chronic disease registries, and bodes well for efforts to migrate away from manual abstraction. This work also supports the view that in new EHR-based registry development, as in new product development, adopting agile principles and practices can help deliver valued, high-quality features early and often. Schattauer GmbH.

  9. Inflammatory bowel disease registries for collection of patient iron parameters in Europe

    PubMed Central

    Halfvarson, Jonas; Cummings, Fraser; Grip, Olof; Savoye, Guillaume

    2018-01-01

    Iron deficiency without anemia and iron deficiency anemia are common and frequently overlooked complications of inflammatory bowel disease. Despite the frequency and impact of iron deficiency in inflammatory bowel disease, there are gaps in our understanding about its incidence, prevalence and natural history and, consequently, patients may be undertreated. Medical registries have a key role in collecting data on the disease’s natural history, the safety and effectiveness of drugs in routine clinical practice, and the quality of care delivered by healthcare services. Even though iron deficiency impacts inflammatory bowel disease patients and healthcare systems substantially, none of the established European inflammatory bowel disease registries systematically collects information on iron parameters and related outcomes. Collection of robust iron parameter data from patient registries is one way to heighten awareness about the importance of iron deficiency in this disease and to generate data to improve the quality of patient care, patient outcomes, and thus quality of life. This objective could be achieved through collection of specific laboratory, clinical, and patient-reported measurements that could be incorporated into existing registries. This review describes the status of current European inflammatory bowel disease registries and the data they generate, in order to highlight their potential role in collecting iron data, to discuss how such information gathering could contribute to our understanding of iron deficiency anemia, and to provide practical information in regard to the incorporation of accumulated iron parameter data into registries. PMID:29563751

  10. 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.

  11. 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 any...

  12. 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 any...

  13. 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 by...

  14. 20 CFR 655.144 - Electronic job registry.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 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 registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

  15. 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 by...

  16. 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 by...

  17. 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 by...

  18. Proving Value in Radiology: Experience Developing and Implementing a Shareable Open Source Registry Platform Driven by Radiology Workflow.

    PubMed

    Gichoya, Judy Wawira; Kohli, Marc D; Haste, Paul; Abigail, Elizabeth Mills; Johnson, Matthew S

    2017-10-01

    Numerous initiatives are in place to support value based care in radiology including decision support using appropriateness criteria, quality metrics like radiation dose monitoring, and efforts to improve the quality of the radiology report for consumption by referring providers. These initiatives are largely data driven. Organizations can choose to purchase proprietary registry systems, pay for software as a service solution, or deploy/build their own registry systems. Traditionally, registries are created for a single purpose like radiation dosage or specific disease tracking like diabetes registry. This results in a fragmented view of the patient, and increases overhead to maintain such single purpose registry system by requiring an alternative data entry workflow and additional infrastructure to host and maintain multiple registries for different clinical needs. This complexity is magnified in the health care enterprise whereby radiology systems usually are run parallel to other clinical systems due to the different clinical workflow for radiologists. In the new era of value based care where data needs are increasing with demand for a shorter turnaround time to provide data that can be used for information and decision making, there is a critical gap to develop registries that are more adapt to the radiology workflow with minimal overhead on resources for maintenance and setup. We share our experience of developing and implementing an open source registry system for quality improvement and research in our academic institution that is driven by our radiology workflow.

  19. Linking a Total Ankle Arthroplasty Registry to Medicare Inpatient Claims without Unique Identifiers.

    PubMed

    Raman, Sudha R; Hammill, Bradley G; Queen, Robin M; Adams, Samuel B; Curtis, Lesley H

    2018-06-20

    Linking clinical registries to administrative claims data enables researchers to capitalize on the specific strengths of each data source with respect to the depth, breadth, and completeness of information. The objectives of this study were to link a health-system-based orthopaedic surgery registry to U.S. Medicare claims data without the use of unique identifiers and to assess the representativeness of the linked records. The registry included clinical data for patients ≥65 years of age who underwent elective, inpatient total ankle arthroplasty (TAA) in a single health system during the period of 2007 through 2012. Registry participants were identified within the Medicare data by linking registry procedures to TAA procedures within the claims data using a combination of procedure date, patient date of birth, and patient sex. We assessed the representativeness of the linked records by comparing them to both unlinked registry records and unlinked Medicare records for TAA procedures. Additionally, we described the availability of postsurgical data for linked records. Of 360 TAA registry participants ≥65 years of age, 280 (77.8%) were matched to a Medicare record; 250 (89.3%) of those 280 participants were matched on the basis of a linking rule that required an exact match for procedure date, date of birth, and sex. The 280 linked records comprised 5.5% of all Medicare TAA procedures among beneficiaries ≥65 years of age enrolled in the fee-for-service Medicare program (n = 5,070). Compared with linked records, unlinked records were more likely to be for patients 65 to 69 years old, but the 2 groups were similar in terms of sex, body mass index, and availability of clinical measurements. Of the linked records, 214 (76.4%) had ≥3 years of postoperative follow-up claims data. Linkage without unique patient identifiers between an orthopaedic registry and Medicare claims data is feasible, allows for assessment of representativeness, and creates a unique resource of

  20. Grounding Abstractness: Abstract Concepts and the Activation of the Mouth

    PubMed Central

    Borghi, Anna M.; Zarcone, Edoardo

    2016-01-01

    One key issue for theories of cognition is how abstract concepts, such as freedom, are represented. According to the WAT (Words As social Tools) proposal, abstract concepts activate both sensorimotor and linguistic/social information, and their acquisition modality involves the linguistic experience more than the acquisition of concrete concepts. We report an experiment in which participants were presented with abstract and concrete definitions followed by concrete and abstract target-words. When the definition and the word matched, participants were required to press a key, either with the hand or with the mouth. Response times and accuracy were recorded. As predicted, we found that abstract definitions and abstract words yielded slower responses and more errors compared to concrete definitions and concrete words. More crucially, there was an interaction between the target-words and the effector used to respond (hand, mouth). While responses with the mouth were overall slower, the advantage of the hand over the mouth responses was more marked with concrete than with abstract concepts. The results are in keeping with grounded and embodied theories of cognition and support the WAT proposal, according to which abstract concepts evoke linguistic-social information, hence activate the mouth. The mechanisms underlying the mouth activation with abstract concepts (re-enactment of acquisition experience, or re-explanation of the word meaning, possibly through inner talk) are discussed. To our knowledge this is the first behavioral study demonstrating with real words that the advantage of the hand over the mouth is more marked with concrete than with abstract concepts, likely because of the activation of linguistic information with abstract concepts. PMID:27777563

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

    PubMed

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

    2017-12-01

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

  2. ISHKS joint registry: A preliminary report.

    PubMed

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

    2013-09-01

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

  3. Rapid Deployment Aortic Replacement (RADAR) Registry in Spain: a protocol.

    PubMed

    Bautista-Hernandez, Victor; Cal-Purriños, Natalia; Arribas-Leal, Jose M; Carnero-Alcazar, Manuel; Gutierrez-Diez, Jose F; Cuenca-Castillo, Jose J

    2017-01-10

    Rapid deployment valves (RDV) represent a newly introduced approach to aortic valve replacement which facilitates surgical implantation and minimally invasive techniques, shortens surgical times and shows excellent haemodynamic performance. However, evidence on their safety, efficacy and potential complications is mostly fitted with small-volume and retrospective studies. Moreover, no current guidelines exist. To improve our knowledge on this technology, The Rapid Deployment Aortic Replacement (RADAR) Registry will be established across Spain with the aim of assessing RDV outcomes in the real-world setting. The RADAR Registry is designed as a product registry that would provide information on its use and outcomes in clinical practice. This multicentre, prospective, national effort will initially involve 4 centres in Spain. Any patient undergoing cardiac surgery for aortic valve replacement and receiving an RDV as an isolated operation or in combination with other cardiac procedures may be included. Participation is voluntary. Data collection is equal to information obtained during standard care and is prospectively entered by the participating physicians perioperatively and during subsequent follow-up visits. The primary outcome assessed is in-hospital and up to 5 years of follow-up, prosthetic valve functioning and clinical status. Secondary outcomes are to perform subgroup analysis, to compare outcomes with other existing approaches and to develop future clinical guidelines. The follow-up assessments are timed with routine clinical appointments. Dissociated data will be extracted and collectively analysed. Initial target sample size for the registry is 500 participants entered with complete follow-up information. Different substudies will be implemented within the registry to investigate specific populations undergoing aortic valve replacement. The protocol is approved by all local institutional ethics committees. Findings will be shared by the participant

  4. (abstract)

    NASA Technical Reports Server (NTRS)

    Dastoor, M. N.; Evans, D. L.

    1996-01-01

    The paper will review the application of NASA developed remote sensing technology towards the monitoring and mitigation of natural hazards. The overview will be followed by recent data on three specific natural hazard applications.

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

    PubMed Central

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

    2017-01-01

    Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries. PMID:29214177

  6. Setting up of the Indian HIPEC Registry: A Registry for Indian Patients with Peritoneal Surface Malignancies.

    PubMed

    Bhatt, Aditi; Mehta, Sanket; Ramakrishnan As; Pande, Pankaj; Rajan, Firoz; Rangole, Ashvin; Saklani, Avanish; Sethna, Kayomarz; Singh, Shivendra; Zaveri, Shabber; Gopinath, K S

    2017-12-01

    There are various registries for patients with peritoneal metastases (PM) that aid pooling of data and generate evidence that dictates current clinical practice. This manuscript describes the setting up of the Indian HIPEC registry that was set up with a similar goal by a group of Indian surgeons. This is a registry for patients with PM treated with CRS and HIPEC in India. It also acts as a database for storing treatment-related information. Patients with PM from colorectal ovarian, gastric, appendiceal tumors, and other rare peritoneal tumors/metastases from rare tumors are enrolled in the registry. A coordinator updates the disease status of patients on a yearly basis. A private organization maintains the database. A non-disclosure agreement is signed between the company and each surgeon contributing to the registry to maintain confidentiality. For enrolling patients, securing institutional permission depends on the requirement of each institute; patient consent is mandatory. Data entry can be prospective or retrospective. To propose and conduct a study, the approval of a scientific committee linked to the registry is required. The Indian HIPEC registry is a practical database for Indian surgeons. There is no regulatory body that mandates collection and publication of scientific data in India. The onus is on each surgeon to capture valuable information pertaining to these common and rare diseases that could contribute to the existing scientific knowledge and guide the treatment of these patients in the future. The next challenge will be to enter data into the registry.

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

    PubMed

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

    2017-01-01

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

  8. Cancer registries in Japan: National Clinical Database and site-specific cancer registries.

    PubMed

    Anazawa, Takayuki; Miyata, Hiroaki; Gotoh, Mitsukazu

    2015-02-01

    The cancer registry is an essential part of any rational program of evidence-based cancer control. The cancer control program is required to strategize in a systematic and impartial manner and efficiently utilize limited resources. In Japan, the National Clinical Database (NCD) was launched in 2010. It is a nationwide prospective registry linked to various types of board certification systems regarding surgery. The NCD is a nationally validated database using web-based data collection software; it is risk adjusted and outcome based to improve the quality of surgical care. The NCD generalizes site-specific cancer registries by taking advantage of their excellent organizing ability. Some site-specific cancer registries, including pancreatic, breast, and liver cancer registries have already been combined with the NCD. Cooperation between the NCD and site-specific cancer registries can establish a valuable platform to develop a cancer care plan in Japan. Furthermore, the prognosis information of cancer patients arranged using population-based and hospital-based cancer registries can help in efficient data accumulation on the NCD. International collaboration between Japan and the USA has recently started and is expected to provide global benchmarking and to allow a valuable comparison of cancer treatment practices between countries using nationwide cancer registries in the future. Clinical research and evidence-based policy recommendation based on accurate data from the nationwide database may positively impact the public.

  9. 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.

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

    PubMed

    Mathis-Edenhofer, Stefan; Piso, Brigitte

    2011-12-01

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

  11. Innovation Abstracts, Volume XV, 1993.

    ERIC Educational Resources Information Center

    Roueche, Suanne D., Ed.

    1993-01-01

    This volume of 30 one- to two-page abstracts from 1993 highlights a variety of innovative approaches to teaching and learning in the community college. Topics covered in the abstracts include: (1) role-playing to encourage critical thinking; (2) team learning techniques to cultivate business skills; (3) librarian-instructor partnerships to create…

  12. Abstracts Produced Using Computer Assistance.

    ERIC Educational Resources Information Center

    Craven, Timothy C.

    2000-01-01

    Describes an experiment that evaluated features of TEXNET abstracting software, compared the use of keywords and phrases that were automatically extracted, tested hypotheses about relations between abstractors' backgrounds and their reactions to abstracting assistance software, and obtained ideas for further features to be developed in TEXNET.…

  13. Innovation Abstracts, Volume XVI, 1994.

    ERIC Educational Resources Information Center

    Roueche, Suanne D., Ed.

    1994-01-01

    This volume of 30 one- to two-page abstracts highlights a variety of innovative approaches to teaching and learning in the community college. Topics covered in the abstracts include: (1) music in the biology classroom; (2) pairing English as a second language and freshman composition students in writing activities; (3) moot court exercises in…

  14. Abstraction in perceptual symbol systems.

    PubMed Central

    Barsalou, Lawrence W

    2003-01-01

    After reviewing six senses of abstraction, this article focuses on abstractions that take the form of summary representations. Three central properties of these abstractions are established: ( i ) type-token interpretation; (ii) structured representation; and (iii) dynamic realization. Traditional theories of representation handle interpretation and structure well but are not sufficiently dynamical. Conversely, connectionist theories are exquisitely dynamic but have problems with structure. Perceptual symbol systems offer an approach that implements all three properties naturally. Within this framework, a loose collection of property and relation simulators develops to represent abstractions. Type-token interpretation results from binding a property simulator to a region of a perceived or simulated category member. Structured representation results from binding a configuration of property and relation simulators to multiple regions in an integrated manner. Dynamic realization results from applying different subsets of property and relation simulators to category members on different occasions. From this standpoint, there are no permanent or complete abstractions of a category in memory. Instead, abstraction is the skill to construct temporary online interpretations of a category's members. Although an infinite number of abstractions are possible, attractors develop for habitual approaches to interpretation. This approach provides new ways of thinking about abstraction phenomena in categorization, inference, background knowledge and learning. PMID:12903648

  15. Food Science and Technology Abstracts.

    ERIC Educational Resources Information Center

    Cohen, Elinor; Federman, Joan

    1979-01-01

    Introduces the reader to the Food Science and Technology Abstracts, a data file that covers worldwide literature on human food commodities and aspects of food processing. Topics include scope, subject index, thesaurus, searching online, and abstracts; tables provide a comparison of ORBIT and DIALOG versions of the file. (JD)

  16. Innovation Abstracts; Volume XIV, 1992.

    ERIC Educational Resources Information Center

    Roueche, Suanne D., Ed.

    1992-01-01

    This series of 30 one- to two-page abstracts covering 1992 highlights a variety of innovative approaches to teaching and learning in the community college. Topics covered in the abstracts include: (1) faculty recognition and orientation; (2) the Amado M. Pena, Jr., Scholarship Program; (3) innovative teaching techniques, with individual abstracts…

  17. Abstracts of Research Papers 1970.

    ERIC Educational Resources Information Center

    Drowatzky, John N., Ed.

    This publication includes the abstracts of 199 research papers presented at the 1970 American Association for Health, Physical Education, and Recreation convention in Seattle, Washington. Abstracts from symposia on environmental quality education, obesity, motor development, research methods, and laboratory equipment are also included. Each…

  18. Vague Language in Conference Abstracts

    ERIC Educational Resources Information Center

    Cutting, Joan

    2012-01-01

    This study examined abstracts for a British Association for Applied Linguistics conference and a Sociolinguistics Symposium, to define the genre of conference abstracts in terms of vague language, specifically universal general nouns (e.g. people) and research general nouns (e.g. results), and to discover if the language used reflected the level…

  19. Artificial Nutritional Support Registries: systematic review.

    PubMed

    Castelló-Botía, I; Wanden-Berghe, C; Sanz-Valero, J

    2009-01-01

    The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.

  20. Vascular surgical data registries for small computers.

    PubMed

    Kaufman, J L; Rosenberg, N

    1984-08-01

    Recent designs for computer-based vascular surgical registries and clinical data bases have employed large centralized systems with formal programming and mass storage. Small computers, of the types created for office use or for word processing, now contain sufficient speed and memory storage capacity to allow construction of decentralized office-based registries. Using a standardized dictionary of terms and a method of data organization adapted to word processing, we have created a new vascular surgery data registry, "VASREG." Data files are organized without programming, and a limited number of powerful logical statements in English are used for sorting. The capacity is 25,000 records with current inexpensive memory technology. VASREG is adaptable to computers made by a variety of manufacturers, and interface programs are available for conversion of the word processor formated registry data into forms suitable for analysis by programs written in a standard programming language. This is a low-cost clinical data registry available to any physician. With a standardized dictionary, preparation of regional and national statistical summaries may be facilitated.

  1. 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.

  2. A Model-Driven, Science Data Product Registration Service

    NASA Astrophysics Data System (ADS)

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

    2011-12-01

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

  3. United States Transuranium and Uranium Registries

    SciTech Connect

    Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

    1991-06-01

    This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjectsmore » reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs.« less

  4. Premature trial discontinuation often not accurately reflected in registries: comparison of registry records with publications.

    PubMed

    Alturki, Reem; Schandelmaier, Stefan; Olu, Kelechi Kalu; von Niederhäusern, Belinda; Agarwal, Arnav; Frei, Roy; Bhatnagar, Neera; Hooft, Lotty; von Elm, Erik; Briel, Matthias

    2017-01-01

    One quarter of randomized clinical trials (RCTs) are prematurely discontinued and frequently remain unpublished. Trial registries can document whether a trial is ongoing, suspended, discontinued, or completed and therefore represent an important source for trial status information. The accuracy of this information is unclear. To examine the accuracy of completion status and reasons for discontinuation documented in trial registries as compared to corresponding publications of discontinued RCTs and to investigate potential predictors for accurate trial status information in registries. We conducted a cross-sectional study comparing information provided in publications (reference standard) to corresponding registry entries. First, we reviewed publications of RCTs providing information on both discontinuation and registration. We identified eligible publications through systematic searches of MEDLINE and EMBASE (2010-2014) and an international cohort of 1,017 RCTs initiated between 2000 and 2003. Second, pairs of investigators independently and in duplicate extracted data from publications and corresponding registry records. Third, for each discontinued RCT, we compared publication information to registry information. We used multivariable regression to examine whether accurate labeling of trials as discontinued (vs. other status) in the registry was associated with recent initiation of RCT, industry sponsorship, multicenter design, or larger sample size. We identified 173 publications of RCTs that were discontinued due to slow recruitment (55%), harm (16%), futility (11%), benefit (5%), other reasons (3%), or multiple reasons (9%). Trials were registered with clinicaltrials.gov (77%), isrctn.com (14%), or other registries (8%). Of the 173 corresponding registry records, 77 (45%) trials were labeled as discontinued and 57 (33%) provided a reason for discontinuation (of which 53, 93%, provided the same reason as in the publication). Labeling of discontinued trials as

  5. Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination

    PubMed Central

    Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E

    2016-01-01

    The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones

  6. NASA Patent Abstracts bibliography: A continuing bibliography. Section 1: Abstracts (supplement 21) Abstracts

    NASA Technical Reports Server (NTRS)

    1982-01-01

    Abstracts are cited for 87 patents and applications introduced into the NASA scientific and technical information system during the period of January 1982 through June 1982. Each entry consists of a citation, an abstract, and in mose cases, a key illustration selected from the patent or patent application.

  7. Newborn infants perceive abstract numbers

    PubMed Central

    Izard, Véronique; Sann, Coralie; Spelke, Elizabeth S.; Streri, Arlette

    2009-01-01

    Although infants and animals respond to the approximate number of elements in visual, auditory, and tactile arrays, only human children and adults have been shown to possess abstract numerical representations that apply to entities of all kinds (e.g., 7 samurai, seas, or sins). Do abstract numerical concepts depend on language or culture, or do they form a part of humans' innate, core knowledge? Here we show that newborn infants spontaneously associate stationary, visual-spatial arrays of 4–18 objects with auditory sequences of events on the basis of number. Their performance provides evidence for abstract numerical representations at the start of postnatal experience. PMID:19520833

  8. A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

    PubMed

    Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

    2017-08-01

    Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

  9. Knowledge acquisition for temporal abstraction.

    PubMed

    Stein, A; Musen, M A; Shahar, Y

    1996-01-01

    Temporal abstraction is the task of detecting relevant patterns in data over time. The knowledge-based temporal-abstraction method uses knowledge about a clinical domain's contexts, external events, and parameters to create meaningful interval-based abstractions from raw time-stamped clinical data. In this paper, we describe the acquisition and maintenance of domain-specific temporal-abstraction knowledge. Using the PROTEGE-II framework, we have designed a graphical tool for acquiring temporal knowledge directly from expert physicians, maintaining the knowledge in a sharable form, and converting the knowledge into a suitable format for use by an appropriate problem-solving method. In initial tests, the tool offered significant gains in our ability to rapidly acquire temporal knowledge and to use that knowledge to perform automated temporal reasoning.

  10. 78 FR 33853 - Announcement for the National Registry of Evidence-Based Programs and Practices (NREPP): Open...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-05

    ... Practices (NREPP): Open Submission Period for Fiscal Year 2014 Background The Substance Abuse and Mental... DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration (SAMHSA) Announcement for the National Registry of Evidence-Based Programs and Practices (NREPP): Open...

  11. How complete are immunization registries? The Philadelphia story.

    PubMed

    Kolasa, Maureen S; Chilkatowsky, Andrew P; Clarke, Kevin R; Lutz, James P

    2006-01-01

    To assess accuracy and completeness of Philadelphia, Pa, registry data among children served by providers in areas at risk for underimmunization. Philadelphia's Department of Public Health selected a simple random sample of 45 children age 19-35 months (or all children age 19-35 months if there were <45 children in the practice) from each of 30 private practices receiving government-funded vaccine and located in zip codes where children are at risk for underimmunization. Chart and registry data were compared with determine the proportion of children missing from the registry and assess differences in immunization coverage. Of 620 children reviewed, 567 (92%) were in the registry. Significant differences (P < .05) were observed in immunization coverage for 4 diphtheria-tetanus-acellular pertussis vaccinations, 3 polio vaccinations, 1 measles-mumps-rubella vaccination, and 3 Haemophilus influenzae type b vaccinations between the chart (80% coverage) and registry (62% coverage). Providers submitting electronic medical records or directly transferring electronic data to the registry had significantly more children in the registry and higher registry-reported immunization coverage than those whose data were entered from billing records or log forms. All practice types experienced difficulties in transferring complete data to the registry. Although 92% of study children were in the registry, immunization coverage was significantly lower when registry data were compared with chart data. Because electronic medical records and direct electronic data transfer resulted in more complete registry data, these methods should be encouraged in linking providers with immunization registries.

  12. African-American participants in a bipolar disorder registry: clinical and treatment characteristics.

    PubMed

    Kupfer, David J; Frank, Ellen; Grochocinski, Victoria J; Houck, Patricia R; Brown, Charlotte

    2005-02-01

    The goal of this paper was to compare clinical characteristics and treatment history of African-American and Caucasian participants in a bipolar disorder registry. The Western Pennsylvania Bipolar Disorder Registry used several recruitment methods to reach individuals self-identified as having bipolar disorder. Individuals who contacted and joined the registry completed an interviewer-administered questionnaire on clinical characteristics and treatment history. A sample of 2,718 registry participants was analyzed in order to compare these characteristics and history by race. African-Americans in the registry reported a greater number of inpatient hospitalizations (9.8 versus 4.4) than Caucasians, as well as a higher suicide attempt rate (64% versus 49%). African-American participants were more likely to report a family member with schizophrenia. With respect to psychotropic medication, African-Americans were less likely to report taking antimanic medication or benzodiazepines, but more likely to report taking antipsychotics than Caucasians. The present findings reinforce previous reports regarding the chronicity and severity of bipolar disorder among African-Americans. They also support previous studies that found high rates of attempted suicide among African-Americans with bipolar disorder. These findings provide further impetus for specific community and mental health services delivery efforts to reduce barriers to early accurate diagnosis and to appropriate ambulatory treatment for bipolar disorder. Copyright (c) 2005, Blackwell Munksgaard.

  13. [Obligatory vaccination reporting in Saxony-Anhalt. Possibilities and limitations of establishing a computerized vaccination registry].

    PubMed

    Oppermann, H; Wahl, G; Borrmann, M; Fleischer, J

    2009-11-01

    Vaccination registries are databases intended to assess and manage complete vaccination data of as many individuals as possible in a population under survey. The task of these registries is to identify low vaccination rates on the individual and population level, to enable systems of reminding individuals, to focus vaccination campaigns and to maximize overall vaccination coverage. Saxony-Anhalt is the only federal state of Germany to have a law that prescribes the reporting of vaccinations. Vaccinations of children up to the age of 7 are reported to the regional public health services. However, as the law provides no regulations as to how the data should be registered and processed, the development of a vaccination registry depends entirely on the initiative and cooperation of the "players in vaccination". The key players in vaccination in Saxony-Anhalt have recently created a Vaccination-Committee, which set out to develop the theoretical standards and a software prototype for the establishment of a computerized vaccination registry. Recent developments in the public health reporting system of Saxony-Anhalt (which strives to modernize its computerized assessment of child and adolescent health) are now opening the possibility to integrate the vaccination registry into the commercially available child health software.

  14. Comprehensive computerized diabetes registry. Serving the Cree of Eeyou Istchee (eastern James Bay).

    PubMed Central

    Dannenbaum, D.; Verronneau, M.; Torrie, J.; Smeja, H.; Robinson, E.; Dumont, C.; Kovitch, I.; Webster, T.

    1999-01-01

    PROBLEM BEING ADDRESSED: Diabetes is rapidly evolving as a major health concern in the Cree population of eastern James Bay (Eeyou Istchee). The Cree Board of Health and Social Services of James Bay (CBHSSJB) diabetes registry was the initial phase in the development of a comprehensive program for diabetes in this region. OBJECTIVE OF PROGRAM: The CBHSSJB diabetes registry was developed to provide a framework to track the prevalence of diabetes and the progression of diabetic complications. The database will also identify patients not receiving appropriate clinical and laboratory screening for diabetic complications, and will provide standardized clinical flow sheets for routine patient management. MAIN COMPONENTS OF PROGRAM: The CBHSSJB diabetes registry uses a system of paper registration forms and clinical flow sheets kept in the nine community clinics. Information from these sheets is entered into a computer database annually. The flow sheets serve as a guideline for appropriate management of patients with diabetes, and provide a one-page summary of relevant clinical and laboratory information. CONCLUSIONS: A diabetes registry is vital to follow the progression of diabetes and diabetic complications in the region served by the CBHSSJB. The registry system incorporates both a means for regional epidemiologic monitoring of diabetes mellitus and clinical tools for managing patients with the disease. PMID:10065310

  15. The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017.

    PubMed

    Shillitoe, B; Bangs, C; Guzman, D; Gennery, A R; Longhurst, H J; Slatter, M; Edgar, D M; Thomas, M; Worth, A; Huissoon, A; Arkwright, P D; Jolles, S; Bourne, H; Alachkar, H; Savic, S; Kumararatne, D S; Patel, S; Baxendale, H; Noorani, S; Yong, P F K; Waruiru, C; Pavaladurai, V; Kelleher, P; Herriot, R; Bernatonienne, J; Bhole, M; Steele, C; Hayman, G; Richter, A; Gompels, M; Chopra, C; Garcez, T; Buckland, M

    2018-06-01

    This is the second report of the United Kingdom Primary Immunodeficiency (UKPID) registry. The registry will be a decade old in 2018 and, as of August 2017, had recruited 4758 patients encompassing 97% of immunology centres within the United Kingdom. This represents a doubling of recruitment into the registry since we reported on 2229 patients included in our first report of 2013. Minimum PID prevalence in the United Kingdom is currently 5·90/100 000 and an average incidence of PID between 1980 and 2000 of 7·6 cases per 100 000 UK live births. Data are presented on the frequency of diseases recorded, disease prevalence, diagnostic delay and treatment modality, including haematopoietic stem cell transplantation (HSCT) and gene therapy. The registry provides valuable information to clinicians, researchers, service commissioners and industry alike on PID within the United Kingdom, which may not otherwise be available without the existence of a well-established registry. © 2018 British Society for Immunology.

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

    PubMed

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

    2017-11-01

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

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

    PubMed

    Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

    2011-01-01

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

  18. 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.

  19. Mexican registry of pulmonary hypertension: REMEHIP.

    PubMed

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

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

  20. 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 Section 24.115 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT.... (Approved by the Office of Management and Budget under control numbers 1512-0058 and 1512-0503) [T.D. ATF...

  1. 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 Section 24.115 Alcohol, Tobacco Products and Firearms ALCOHOL AND TOBACCO TAX AND TRADE BUREAU, DEPARTMENT.... (Approved by the Office of Management and Budget under control numbers 1512-0058 and 1512-0503) [T.D. ATF...

  2. The design of Radiation Accident Registry.

    PubMed

    Chen, Jing; Seely, Bob; Bergman, Lauren; Moir, Deborah

    2011-03-01

    In order to provide effective monitoring and follow-up on the health effects of individuals accidentally exposed to ionising radiation, a Radiation Accident Registry (RAR) has been designed and constructed as an extension to the existing National Dose Registry (NDR). The RAR has basic functions of recording, monitoring and reporting. This type of registry is able to assist responders in preparing for and managing situations during radiological events and in providing effective follow-up on the long-term health effects of persons exposed to ionising radiation. It is especially important to register radiation-exposed people in vulnerable population groups, such as children and pregnant women, to ensure proper long-term health care and protection. Even though radiation accidents are rare, a registry prepared for such accidents could involve a large population and, in some cases, require lifetime monitoring for individuals. One of the most challenging tasks associated with RAR is the assessment of radiation dose resulting from accidents. In some cases, the assessment of radiation doses to individuals could be a process requiring the involvement of various methods. The development of fast and accurate dose assessment tools will remain a long-term challenge associated with the RAR. To meet this challenge, further research activities in radiation dosimetry for individual monitoring are needed.

  3. 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 or...

  4. 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 or...

  5. DSH abstract: coverage of the world communicative disorders literature.

    PubMed

    Seaton, W H; Williams, D M

    1982-06-01

    The percentage of journal articles covered by dsh Abstracts and the time it took these articles to appear as abstracts in this secondary publication were analyzed. Articles were obtained from nineteen communicative disorders journals every other year for the years from 1968 to 1976. Then the author index of dsh Abstracts was searched each year for up to five years following journal publication to determine whether each article was included in this abstracting service's coverage of the world literature. Of the 5548 articles included in the study, 3270 (59%) were covered by this abstracting service within a mean time of 9 months; however, time lag and coverage varied considerably for individual journals on a year by year basis. It was concluded that for historical searches and current awareness needs this secondary publication may not be meeting the information needs of communicative disorders specialists.

  6. Achieving interoperability for metadata registries using comparative object modeling.

    PubMed

    Park, Yu Rang; Kim, Ju Han

    2010-01-01

    Achieving data interoperability between organizations relies upon agreed meaning and representation (metadata) of data. For managing and registering metadata, many organizations have built metadata registries (MDRs) in various domains based on international standard for MDR framework, ISO/IEC 11179. Following this trend, two pubic MDRs in biomedical domain have been created, United States Health Information Knowledgebase (USHIK) and cancer Data Standards Registry and Repository (caDSR), from U.S. Department of Health & Human Services and National Cancer Institute (NCI), respectively. Most MDRs are implemented with indiscriminate extending for satisfying organization-specific needs and solving semantic and structural limitation of ISO/IEC 11179. As a result it is difficult to address interoperability among multiple MDRs. In this paper, we propose an integrated metadata object model for achieving interoperability among multiple MDRs. To evaluate this model, we developed an XML Schema Definition (XSD)-based metadata exchange format. We created an XSD-based metadata exporter, supporting both the integrated metadata object model and organization-specific MDR formats.

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

    PubMed Central

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

    2009-01-01

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

  8. A Good Idea May Not Be Good Enough: Stakeholder Buy In to QuitConnect, a National Smokers' Registry.

    PubMed

    Macauda, Mark M; Thrasher, James F; Saul, Jessie E; Celestino, Paula; Cummings, K Michael; Strayer, Scott M

    2017-01-01

    To examine interest and concerns among those who fund and operate state-run smoking cessation helplines (quitlines) about the concept of creating a centralized smokers' registry that could be used to reengage smokers after they receive initial quitline support services. We conducted 3, hour-long focus groups with stakeholders, covering the perceived benefits and barriers to creating a smokers' registry. The focus groups were conducted via telephone. Three groups participated: quitline service providers (n = 14), quitline funders (n = 9), and national quitline partners (n = 8). Data collection: Focus groups were recorded, transcribed, and coded for major relevant themes. Analysis Strategies: We used a grounded theory approach. Stakeholders were generally positive about the concept of a centralized smokers' registry (ie, QuitConnect), especially with its potential to link relapsed smokers to ongoing research studies designed to help smokers achieve abstinence from tobacco. However, stakeholders expressed concern about QuitConnect duplicating services already offered by state quitlines. Despite a common goal, many state quitline stakeholders had strong reservations about the creation of a centralized smokers' registry unless they could see clear evidence that the registry added value and was not duplicative of their existing services.

  9. Construct Abstraction for Automatic Information Abstraction from Digital Images

    DTIC Science & Technology

    2006-05-30

    objects and features and the names of objects of objects and features. For example, in Figure 15 the parts of the fish could be named the ‘mouth... fish -1 fish -2 fish -3 tennis shoe tennis racquet...of abstraction and generality. For example, an algorithm might usefully find a polygon ( blob ) in an image and calculate numbers such as the

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

    PubMed

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

    2010-10-01

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

  11. Modelling Metamorphism by Abstract Interpretation

    NASA Astrophysics Data System (ADS)

    Dalla Preda, Mila; Giacobazzi, Roberto; Debray, Saumya; Coogan, Kevin; Townsend, Gregg M.

    Metamorphic malware apply semantics-preserving transformations to their own code in order to foil detection systems based on signature matching. In this paper we consider the problem of automatically extract metamorphic signatures from these malware. We introduce a semantics for self-modifying code, later called phase semantics, and prove its correctness by showing that it is an abstract interpretation of the standard trace semantics. Phase semantics precisely models the metamorphic code behavior by providing a set of traces of programs which correspond to the possible evolutions of the metamorphic code during execution. We show that metamorphic signatures can be automatically extracted by abstract interpretation of the phase semantics, and that regular metamorphism can be modelled as finite state automata abstraction of the phase semantics.

  12. Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

    PubMed

    Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

    2017-07-01

    All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.

  13. Static Analysis Using Abstract Interpretation

    NASA Technical Reports Server (NTRS)

    Arthaud, Maxime

    2017-01-01

    Short presentation about static analysis and most particularly abstract interpretation. It starts with a brief explanation on why static analysis is used at NASA. Then, it describes the IKOS (Inference Kernel for Open Static Analyzers) tool chain. Results on NASA projects are shown. Several well known algorithms from the static analysis literature are then explained (such as pointer analyses, memory analyses, weak relational abstract domains, function summarization, etc.). It ends with interesting problems we encountered (such as C++ analysis with exception handling, or the detection of integer overflow).

  14. 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 must...

  15. 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 and...

  16. 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 and...

  17. 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 and...

  18. 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 and...

  19. 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 and...

  20. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... information about the type and size of vessel that the NOAA ENC data has been provided for as well as an... 15 Commerce and Foreign Trade 3 2011-01-01 2011-01-01 false Registry of data users. 995.21 Section... § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

  1. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 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 must... 42 Public Health 5 2011-10-01 2011-10-01 false Registry of nurse aides. 483.156 Section 483.156...

  2. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 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 must... 42 Public Health 5 2014-10-01 2014-10-01 false Registry of nurse aides. 483.156 Section 483.156...

  3. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 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 must... 42 Public Health 5 2012-10-01 2012-10-01 false Registry of nurse aides. 483.156 Section 483.156...

  4. 42 CFR 483.156 - Registry of nurse aides.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 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 must... 42 Public Health 5 2013-10-01 2013-10-01 false Registry of nurse aides. 483.156 Section 483.156...

  5. [Respiratory disease registries in Spain: fundamentals and organization].

    PubMed

    Lara, Beatriz; Morales, Pilar; Blanco, Ignacio; Vendrell, Montserrat; de Gracia Roldán, Javier; Monreal, Manel; Orriols, Ramón; Isidro, Isabel; Abú-Shams, Khalil; Escribano, Pilar; Villena, Victoria; Rodrigo, Teresa; Vidal Plà, Rafael; García-Yuste, Mariano; Miravitlles, Marc

    2011-08-01

    This present paper describes the general characteristics, objectives and organizational aspects of the respiratory disease registries in Spain with the aim to report their activities and increase their diffusion. The document compiles information on the following registries: the Spanish Registry of Patients with Alpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of Thromboembolic Disease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish Multi-center Study of Neuroendocrine Pulmonary Tumors. Our paper provides information on each of the registries cited. Each registry has compiled specific clinical information providing data in real situations, and completes the results obtained from clinical assays. Said information has been published both in national as well as international publications and has lead to the creation of various guidelines. Therefore, the activities of the professionals involved in the registries have spread the knowledge about the diseases studied, promoting the exchange of information among workgroups. Copyright © 2010 SEPAR. Published by Elsevier Espana. All rights reserved.

  6. Validation of prostate-specific antigen laboratory values recorded in Surveillance, Epidemiology, and End Results registries.

    PubMed

    Adamo, Margaret Peggy; Boten, Jessica A; Coyle, Linda M; Cronin, Kathleen A; Lam, Clara J K; Negoita, Serban; Penberthy, Lynne; Stevens, Jennifer L; Ward, Kevin C

    2017-02-15

    Researchers have used prostate-specific antigen (PSA) values collected by central cancer registries to evaluate tumors for potential aggressive clinical disease. An independent study collecting PSA values suggested a high error rate (18%) related to implied decimal points. To evaluate the error rate in the Surveillance, Epidemiology, and End Results (SEER) program, a comprehensive review of PSA values recorded across all SEER registries was performed. Consolidated PSA values for eligible prostate cancer cases in SEER registries were reviewed and compared with text documentation from abstracted records. Four types of classification errors were identified: implied decimal point errors, abstraction or coding implementation errors, nonsignificant errors, and changes related to "unknown" values. A total of 50,277 prostate cancer cases diagnosed in 2012 were reviewed. Approximately 94.15% of cases did not have meaningful changes (85.85% correct, 5.58% with a nonsignificant change of <1 ng/mL, and 2.80% with no clinical change). Approximately 5.70% of cases had meaningful changes (1.93% due to implied decimal point errors, 1.54% due to abstract or coding errors, and 2.23% due to errors related to unknown categories). Only 419 of the original 50,277 cases (0.83%) resulted in a change in disease stage due to a corrected PSA value. The implied decimal error rate was only 1.93% of all cases in the current validation study, with a meaningful error rate of 5.81%. The reasons for the lower error rate in SEER are likely due to ongoing and rigorous quality control and visual editing processes by the central registries. The SEER program currently is reviewing and correcting PSA values back to 2004 and will re-release these data in the public use research file. Cancer 2017;123:697-703. © 2016 American Cancer Society. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

  7. Typographic Settings for Structured Abstracts.

    ERIC Educational Resources Information Center

    Hartley, James

    2000-01-01

    Lists some of the major typographic variables involved in structured abstracts (containing sub-headings). Illustrates how typography can affect clarity by presenting seven examples that illustrate the effects of these typographic variables in practice. Concludes with a final example of an effective approach. (SR)

  8. Handedness Shapes Children's Abstract Concepts

    ERIC Educational Resources Information Center

    Casasanto, Daniel; Henetz, Tania

    2012-01-01

    Can children's handedness influence how they represent abstract concepts like "kindness" and "intelligence"? Here we show that from an early age, right-handers associate rightward space more strongly with positive ideas and leftward space with negative ideas, but the opposite is true for left-handers. In one experiment, children indicated where on…

  9. What Is It? Elementary Abstraction

    ERIC Educational Resources Information Center

    Von Sossan, Joanne

    2010-01-01

    Abstraction can be hard for older students to understand, and it usually involves simplifying or rearranging natural objects to meet the needs of the artist, whether it be for organization or expression. But, in reality, that is what young artists do when they draw from life. They do not have enough experience--and sometimes the patience--to see…

  10. ERGONOMICS ABSTRACTS 48347-48982.

    ERIC Educational Resources Information Center

    Ministry of Technology, London (England). Warren Spring Lab.

    IN THIS COLLECTION OF ERGONOMICS ABSTRACTS AND ANNOTATIONS THE FOLLOWING AREAS OF CONCERN ARE REPRESENTED--GENERAL REFERENCES, METHODS, FACILITIES, AND EQUIPMENT RELATING TO ERGONOMICS, SYSTEMS OF MAN AND MACHINES, VISUAL, AUDITORY, AND OTHER SENSORY INPUTS AND PROCESSES (INCLUDING SPEECH AND INTELLIGIBILITY), INPUT CHANNELS, BODY MEASUREMENTS,…

  11. Journalism Abstracts. Volume 25, 1987.

    ERIC Educational Resources Information Center

    Wilhoit, Frances Goins, Ed.

    Collected from 55 universities in the United States and Canada, and published by the Association for Education in Journalism and Mass Communication, this volume contains 339 abstracts of research dissertations and theses accepted for graduate degrees in journalism and mass communications from July 1, 1986 through June 30, 1987. Only research…

  12. Metaphoric Images from Abstract Concepts.

    ERIC Educational Resources Information Center

    Vizmuller-Zocco, Jana

    1992-01-01

    Discusses children's use of metaphors to create meaning, using as an example the pragmatic and "scientific" ways in which preschool children explain thunder and lightning to themselves. Argues that children are being shortchanged by modern scientific notions of abstractness and that they should be encouraged to create their own explanations of…

  13. An electronic registry for physiotherapists in Belgium.

    PubMed

    Buyl, Ronald; Nyssen, Marc

    2008-01-01

    This paper describes the results of the KINELECTRICS project. Since more and more clinical documents are stored and transmitted in an electronic way, the aim of this project was to design an electronic version of the registry that contains all acts of physiotherapists. The solution we present here, not only meets all legal constraints, but also enables to verify the traceability and inalterability of the generated documents, by means of SHA-256 codes. The proposed structure, using XML technology can also form a basis for the development of tools that can be used by the controlling authorities. By means of a certification procedure for software systems, we succeeded in developing a user friendly system that enables end-users that use a quality labeled software package, to automatically produce all the legally necessary documents concerning the registry. Moreover, we hope that this development will be an incentive for non-users to start working in an electronic way.

  14. 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 schemesmore » 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.« less

  15. The St. Thomas' UK Adult Twin Registry.

    PubMed

    Spector, Tim D; MacGregor, Alex J

    2002-10-01

    The Registry consists of nearly 10,000 monozygous and dizygous adult caucasian twins aged 18-80 from all over the UK and was started in 1993. This is a volunteer sample recruited by successive media campaigns without selecting for particular diseases or traits. All twins receive a series of disease questionnaires. In addition over half the twins have been assessed in detail clinically for several hundred phenotypes related to common diseases or intermediate traits. The focus has been primarily on cardiovascular, metabolic, musculoskeletal, dermatological, and opthalmological diseases. Over 3000 DZ twins have had a genome wide scan performed as well as many candidate genes allowing both linkage and association studies. The registry has led to many successful innovative research projects, particularly in common diseases previously thought to be predominantly environmental and helped positionally clone some novel genes for common diseases.

  16. Core outcome sets and trial registries.

    PubMed

    Clarke, Mike; Williamson, Paula

    2015-05-14

    Some reasons for registering trials might be considered as self-serving, such as satisfying the requirements of a journal in which the researchers wish to publish their eventual findings or publicising the trial to boost recruitment. Registry entries also help others, including systematic reviewers, to know about ongoing or unpublished studies and contribute to reducing research waste by making it clear what studies are ongoing. Other sources of research waste include inconsistency in outcome measurement across trials in the same area, missing data on important outcomes from some trials, and selective reporting of outcomes. One way to reduce this waste is through the use of core outcome sets: standardised sets of outcomes for research in specific areas of health and social care. These do not restrict the outcomes that will be measured, but provide the minimum to include if a trial is to be of the most use to potential users. We propose that trial registries, such as ISRCTN, encourage researchers to note their use of a core outcome set in their entry. This will help people searching for trials and those worried about selective reporting in closed trials. Trial registries can facilitate these efforts to make new trials as useful as possible and reduce waste. The outcomes section in the entry could prompt the researcher to consider using a core outcome set and facilitate the specification of that core outcome set and its component outcomes through linking to the original core outcome set. In doing this, registries will contribute to the global effort to ensure that trials answer important uncertainties, can be brought together in systematic reviews, and better serve their ultimate aim of improving health and well-being through improving health and social care.

  17. 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

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

    PubMed

    Natter, Marc D; 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

    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. 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. 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. We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. 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.

  19. 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. Copyright ©ERS 2016.

  20. Use of electronic immunization registry in the surveillance of adverse events following immunization

    PubMed Central

    Sato, Ana Paula Sayuri; Ferreira, Vinícius Leati de Rossi; Tauil, Márcia de Cantuária; Rodrigues, Laura Cunha; Barros, Mariana Bernardes; Martineli, Edmar; Costa, Ângela Aparecida; Inenami, Marta; Waldman, Eliseu Alves

    2018-01-01

    ABSTRACT OBJECTIVE To describe adverse events following vaccination (AEFV) of children under two years old and analyze trend of this events from 2000 to 2013, in the city of Araraquara (SP), Brazil. METHODS This is a descriptive study conducted with data of the passive surveillance system of AEFV that is available in the electronic immunization registry (EIR) of the computerized medical record of the municipal health service (Juarez System). The study variables were: age, gender, vaccine, dose, clinical manifestations and hospitalization. We estimated rates using AEFV as numerator and administered doses of vaccines as denominator. The surveillance sensitivity was estimated by applying the method proposed by the Centers for Disease Control and Prevention. We used Prais-Winsten regression with a significance level of 5.0%. RESULTS The average annual rate of AEFV was 11.3/10,000 administered doses, however without a trend in the study period (p=0.491). Most cases occurred after the first dose (41.7%) and among children under one year of age (72.6%). Vaccines with pertussis component, yellow fever and measles-mumps-rubella were the most reactogenic. We highlighted the rates of hypotonic-hyporesponsive episodes and convulsion that were 4.1/10,000 and 1.5/10,000 doses of vaccines with pertussis component, respectively, most frequently in the first dose; 60,0% of cases presented symptoms in the first 24 hours after vaccination, however, 18.6% showed after 96 hours. The sensitivity of surveillance was 71.9% and 78.9% for hypotonic-hyporesponsive episodes and convulsion, respectively. CONCLUSIONS The EIR-based AEFV surveillance system proved to be useful and highly sensitive to describe the safety profile of vaccines in a medium-sized city. It was also shown that the significant increase of the vaccines included in the basic vaccination schedule in childhood in the last decade did not alter the high safety standard of the National Immunization Program. PMID:29412373

  1. 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.

  2. Domain-specific Web Service Discovery with Service Class Descriptions

    SciTech Connect

    Rocco, D; Caverlee, J; Liu, L

    2005-02-14

    This paper presents DynaBot, a domain-specific web service discovery system. The core idea of the DynaBot service discovery system is to use domain-specific service class descriptions powered by an intelligent Deep Web crawler. In contrast to current registry-based service discovery systems--like the several available UDDI registries--DynaBot promotes focused crawling of the Deep Web of services and discovers candidate services that are relevant to the domain of interest. It uses intelligent filtering algorithms to match services found by focused crawling with the domain-specific service class descriptions. We demonstrate the capability of DynaBot through the BLAST service discovery scenario and describe ourmore » initial experience with DynaBot.« less

  3. Integrating semantic web technologies and geospatial catalog services for geospatial information discovery and processing in cyberinfrastructure

    SciTech Connect

    Yue, Peng; Gong, Jianya; Di, Liping

    Abstract A geospatial catalogue service provides a network-based meta-information repository and interface for advertising and discovering shared geospatial data and services. Descriptive information (i.e., metadata) for geospatial data and services is structured and organized in catalogue services. The approaches currently available for searching and using that information are often inadequate. Semantic Web technologies show promise for better discovery methods by exploiting the underlying semantics. Such development needs special attention from the Cyberinfrastructure perspective, so that the traditional focus on discovery of and access to geospatial data can be expanded to support the increased demand for processing of geospatial information andmore » discovery of knowledge. Semantic descriptions for geospatial data, services, and geoprocessing service chains are structured, organized, and registered through extending elements in the ebXML Registry Information Model (ebRIM) of a geospatial catalogue service, which follows the interface specifications of the Open Geospatial Consortium (OGC) Catalogue Services for the Web (CSW). The process models for geoprocessing service chains, as a type of geospatial knowledge, are captured, registered, and discoverable. Semantics-enhanced discovery for geospatial data, services/service chains, and process models is described. Semantic search middleware that can support virtual data product materialization is developed for the geospatial catalogue service. The creation of such a semantics-enhanced geospatial catalogue service is important in meeting the demands for geospatial information discovery and analysis in Cyberinfrastructure.« less

  4. An Abstract Plan Preparation Language

    NASA Technical Reports Server (NTRS)

    Butler, Ricky W.; Munoz, Cesar A.

    2006-01-01

    This paper presents a new planning language that is more abstract than most existing planning languages such as the Planning Domain Definition Language (PDDL) or the New Domain Description Language (NDDL). The goal of this language is to simplify the formal analysis and specification of planning problems that are intended for safety-critical applications such as power management or automated rendezvous in future manned spacecraft. The new language has been named the Abstract Plan Preparation Language (APPL). A translator from APPL to NDDL has been developed in support of the Spacecraft Autonomy for Vehicles and Habitats Project (SAVH) sponsored by the Explorations Technology Development Program, which is seeking to mature autonomy technology for application to the new Crew Exploration Vehicle (CEV) that will replace the Space Shuttle.

  5. The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.

    PubMed

    Mantick, Neal; Bachman, Eric; Baujat, Genevieve; Brown, Matt; Collins, Oliver; De Cunto, Carmen; Delai, Patricia; Eekhoff, Marelise; Zum Felde, Roger; Grogan, Donna Roy; Haga, Nobuhiko; Hsiao, Edward; Kantanie, Sharon; Kaplan, Frederick; Keen, Richard; Milosevic, Jelena; Morhart, Rolf; Pignolo, Robert; Qian, Xiaobing; di Rocco, Maja; Scott, Christiaan; Sherman, Adam; Wallace, Marin; Williams, Nicky; Zhang, Keqin; Bogard, Betsy

    2018-04-01

    The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry

  6. Abstract Jupiter Atmosphere (Artist Concept)

    NASA Image and Video Library

    2018-03-28

    Citizen scientist Rick Lundh created this abstract Jovian artwork using data from the JunoCam imager onboard NASA's Juno spacecraft. The original image captures a close-up view of numerous storms in the northern hemisphere of Jupiter. To produce this artwork, Lundh selected a more contrasting part of one of Jupiter's storms, then cropped the image and applied an oil-painting filter. https://photojournal.jpl.nasa.gov/catalog/PIA21983

  7. Cryogenic foam insulation: Abstracted publications

    NASA Technical Reports Server (NTRS)

    Williamson, F. R.

    1977-01-01

    A group of documents were chosen and abstracted which contain information on the properties of foam materials and on the use of foams as thermal insulation at cryogenic temperatures. The properties include thermal properties, mechanical properties, and compatibility properties with oxygen and other cryogenic fluids. Uses of foams include applications as thermal insulation for spacecraft propellant tanks, and for liquefied natural gas storage tanks and pipelines.

  8. Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

    PubMed

    Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

    2018-02-01

    The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

  9. 2013 SYR Accepted Poster Abstracts.

    PubMed

    2013-01-01

    SYR 2013 Accepted Poster abstracts: 1. Benefits of Yoga as a Wellness Practice in a Veterans Affairs (VA) Health Care Setting: If You Build It, Will They Come? 2. Yoga-based Psychotherapy Group With Urban Youth Exposed to Trauma. 3. Embodied Health: The Effects of a Mind�Body Course for Medical Students. 4. Interoceptive Awareness and Vegetable Intake After a Yoga and Stress Management Intervention. 5. Yoga Reduces Performance Anxiety in Adolescent Musicians. 6. Designing and Implementing a Therapeutic Yoga Program for Older Women With Knee Osteoarthritis. 7. Yoga and Life Skills Eating Disorder Prevention Among 5th Grade Females: A Controlled Trial. 8. A Randomized, Controlled Trial Comparing the Impact of Yoga and Physical Education on the Emotional and Behavioral Functioning of Middle School Children. 9. Feasibility of a Multisite, Community based Randomized Study of Yoga and Wellness Education for Women With Breast Cancer Undergoing Chemotherapy. 10. A Delphi Study for the Development of Protocol Guidelines for Yoga Interventions in Mental Health. 11. Impact Investigation of Breathwalk Daily Practice: Canada�India Collaborative Study. 12. Yoga Improves Distress, Fatigue, and Insomnia in Older Veteran Cancer Survivors: Results of a Pilot Study. 13. Assessment of Kundalini Mantra and Meditation as an Adjunctive Treatment With Mental Health Consumers. 14. Kundalini Yoga Therapy Versus Cognitive Behavior Therapy for Generalized Anxiety Disorder and Co-Occurring Mood Disorder. 15. Baseline Differences in Women Versus Men Initiating Yoga Programs to Aid Smoking Cessation: Quitting in Balance Versus QuitStrong. 16. Pranayam Practice: Impact on Focus and Everyday Life of Work and Relationships. 17. Participation in a Tailored Yoga Program is Associated With Improved Physical Health in Persons With Arthritis. 18. Effects of Yoga on Blood Pressure: Systematic Review and Meta-analysis. 19. A Quasi-experimental Trial of a Yoga based Intervention to Reduce Stress and

  10. Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data*. An Agile Framework.

    PubMed

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

    2017-06-14

    both (a) real-time patient lists of registry patients and (b) EDW-generated CQM data. Agile project management methods were employed, including co-development, lightweight requirements documentation with User Stories and acceptance criteria, and time-boxed iterative development of EHR features in 2-week "sprints" for rapid-cycle feedback and refinement. Using this approach, in calendar year 2015 we developed a total of 43 specialty chronic disease registries, with 111 new EHR data collection and clinical decision support tools, 163 new clinical quality measures, and 30 clinic-specific dashboards reporting on both real-time patient care gaps and summarized and vetted CQM measure performance trends. This study suggests concurrent design of EHR data collection tools and reporting can quickly yield useful EHR structured data for chronic disease registries, and bodes well for efforts to migrate away from manual abstraction. This work also supports the view that in new EHR-based registry development, as in new product development, adopting agile principles and practices can help deliver valued, high-quality features early and often.

  11. Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data: An Agile Framework

    PubMed Central

    Kannan, V; Fish, JS; Mutz, JM; Carrington, AR; Lai, K; Davis, LS; Youngblood, JE; Rauschuber, MR; Flores, KA; Sara, EJ; Bhat, DG; Willett, DL

    2017-01-01

    -specific dashboards were created in the EHR to display both (a) real-time patient lists of registry patients and (b) EDW-generated CQM data. Agile project management methods were employed, including co-development, lightweight requirements documentation with User Stories and acceptance criteria, and time-boxed iterative development of EHR features in 2-week “sprints” for rapid-cycle feedback and refinement. Results Using this approach, in calendar year 2015 we developed a total of 43 specialty chronic disease registries, with 111 new EHR data collection and clinical decision support tools, 163 new clinical quality measures, and 30 clinic-specific dashboards reporting on both real-time patient care gaps and summarized and vetted CQM measure performance trends. Conclusions This study suggests concurrent design of EHR data collection tools and reporting can quickly yield useful EHR structured data for chronic disease registries, and bodes well for efforts to migrate away from manual abstraction. This work also supports the view that in new EHR-based registry development, as in new product development, adopting agile principles and practices can help deliver valued, high-quality features early and often. PMID:28930362

  12. Cancer prevalence in Italian cancer registry areas: the ITAPREVAL study. ITAPREVAL Working Group.

    PubMed

    Micheli, A; Francisci, S; Krogh, V; Rossi, A G; Crosignani, P

    1999-01-01

    To present data on cancer prevalence for the areas covered by Italian cancer registries, by using a standardized set of data collection and elaboration criteria, and a single method of data analysis. Data on over 250,000 patients with cancer, diagnosed between 1978 and 1992, from 11 Italian cancer registries covering about 12% of the Italian population were collected, validated and analyzed according to the unified protocol of the ITAPREVAL project. The method implemented in the PREVAL computer program was used to provide prevalence estimates for the period covered by cancer registration. The total prevalence for each registry and for the pool of all registries was then estimated by correcting for incomplete observations due to the period in which the registration was not yet activated. All prevalence estimates were for 1992. Prevalence figures are presented by cancer site, age, sex, years from diagnosis and registry area. For all malignancies combined, total prevalence ranged from 1,350 per 100,000 inhabitants in Ragusa to 3,650 per 100,000 inhabitants in Romagna, the ratio between these two extremes being 2.7. For the pool of the areas covered by registration cancer prevalence was 3,100 per 100,000 females and 2,250 per 100,000 males. About a third of the total female cases and about half the male cases were diagnosed in the previous five years. Among those aged over 75 years, total prevalence was higher for males than for females: 11,300 versus 8,900 per 100,000 respectively. This is the first large-scale estimate of the burden of cancer in Italy. It is also one of the first studies in the world which was aimed to study cancer prevalence in detail. These data are necessary for predicting health service needs and help in the evaluation of differences in health service demand by sex, age and Italian regions.

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

    PubMed

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

    2012-08-01

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

  14. Youth Studies Abstracts. Vol. 4 No. 3.

    ERIC Educational Resources Information Center

    Youth Studies Abstracts, 1985

    1985-01-01

    This volume contains 169 abstracts of documents dealing with youth and educational programs for youth. Included in the volume are 97 abstracts of documents dealing with social and educational developments; 56 abstracts of program reports, reviews, and evaluations; and 16 abstracts of program materials. Abstracts are grouped according to the…

  15. Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries.

    PubMed

    Solomon, Daniel H; Shadick, Nancy A; Weinblatt, Michael E; Frits, Michelle; Iannaccone, Christine; Zak, Agnes; Korzenik, Joshua R

    2017-04-17

    The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. We conducted similar surveys in two disease-based registries based at one academic medical center in the US. One group of patients with rheumatoid arthritis (RA) had been enrolled in a registry, and we focused on retention factors. In a second group of patients with inflammatory bowel disease (IBD) recently enrolled or considering enrollment, we examined factors that would influence their enrollment and willingness to answer frequent questionnaires and give biospecimens. The surveys were analyzed using descriptive statistics and the two cohorts were compared using nonparametric and chi-square tests. We received 150 (50%) completed surveys from RA and 169 (63%) from IBD patients. Mean age of subjects was 62 years in RA and 43 in IBD with more women respondents with RA (83%) than IBD (62%). The two groups described very similar factors as the top three motivations for participation: desire to help others, desire to improve care of own disease, and ease of volunteering. Preferred methods of surveying included mail, e-mail, but telephone was not favored; age was an important correlate of this preference. Respondents preferred surveys either every 1-3 months (28.7% RA and 55.0% IBD) or every 4-6 months (50.7% RA and 29.0% IBD). They differed in the preference for payment for answering surveys with 68.0% with RA answering that no payment was necessary but only 36.1% with IBD felt similarly. Patients engaged in clinical registries demonstrate a high level of commitment to improve care and many report a willingness to answer questions relatively frequently.

  16. Meta-analysis of individual registry results enhances international registry collaboration.

    PubMed

    Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

    2018-03-28

    Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

  17. Patent Abstract Digest. Volume I.

    DTIC Science & Technology

    1979-04-30

    compact. self -contained transducer unit for 151) Field of Stucek............... 73/71 5 US, 67.5 R. electromagnetic generation and detection of...BSTRACT SPONSORED PROGRAMS FROM THE AIR FORCE SYSTEMS COMMAND United States Patent 1191 (111 4,115,616 Heitz et &1. (45 Sep. 19, 1978 154) SELF -SEALING...ioseph E. Rutz; Wiliam J.O’Brien (221 Filed: F . (57 ABSTRACT A self -sealing multi-laminated fuel line composite mate. rial composed of (a) a plastic

  18. Shoestring Budget Radio Astronomy (Abstract)

    NASA Astrophysics Data System (ADS)

    Hoot, J. E.

    2017-12-01

    (Abstract only) The commercial exploitation of microwave frequencies for cellular, WiFi, Bluetooth, HDTV, and satellite digital media transmission has brought down the cost of the components required to build an effective radio telescope to the point where, for the cost of a good eyepiece, you can construct and operate a radio telescope. This paper sets forth a family of designs for 1421 MHz telescopes. It also proposes a method by which operators of such instruments can aggregate and archive data via the Internet. With 90 or so instruments it will be possible to survey the entire radio sky for transients with a 24 hour cadence.

  19. Operating System Abstraction Layer (OSAL)

    NASA Technical Reports Server (NTRS)

    Yanchik, Nicholas J.

    2007-01-01

    This viewgraph presentation reviews the concept of the Operating System Abstraction Layer (OSAL) and its benefits. The OSAL is A small layer of software that allows programs to run on many different operating systems and hardware platforms It runs independent of the underlying OS & hardware and it is self-contained. The benefits of OSAL are that it removes dependencies from any one operating system, promotes portable, reusable flight software. It allows for Core Flight software (FSW) to be built for multiple processors and operating systems. The presentation discusses the functionality, the various OSAL releases, and describes the specifications.

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

    PubMed

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

    2018-03-01

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

  1. Greenbook Abstract and Catalog--1.

    ERIC Educational Resources Information Center

    Coole, Walter A.; Reitan, Henry M.

    This catalog is intended to be issued periodically as a means of extending and updating teaching materials which have been previously published through ERIC by these authors. The materials include the Alpha and Gamma levels of the "Greenbook System," pre-professional and entry in-service professional levels of an integrated sequence of…

  2. Standardized Cardiovascular Data for Clinical Research, Registries, and Patient Care

    PubMed Central

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

    2013-01-01

    Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nevertheless these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the two major technical standards organizations in healthcare, the Clinical Data Interchange Standards Consortium and Health Level 7 International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care. PMID

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

    PubMed

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

    2017-07-01

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

  4. A Dutch Nationwide Bariatric Quality Registry: DATO.

    PubMed

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

    2017-12-22

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

  5. [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

  6. 45 CFR 2540.204 - When must I conduct a National Service Criminal History Check on an individual in a covered...

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... position begins work or starts service. (2) You must initiate state registry or FBI criminal history checks... from state registry or FBI criminal history checks as long as the individual is not permitted access to...

  7. Abstracting application deployment on Cloud infrastructures

    NASA Astrophysics Data System (ADS)

    Aiftimiei, D. C.; Fattibene, E.; Gargana, R.; Panella, M.; Salomoni, D.

    2017-10-01

    Deploying a complex application on a Cloud-based infrastructure can be a challenging task. In this contribution we present an approach for Cloud-based deployment of applications and its present or future implementation in the framework of several projects, such as “!CHAOS: a cloud of controls” [1], a project funded by MIUR (Italian Ministry of Research and Education) to create a Cloud-based deployment of a control system and data acquisition framework, “INDIGO-DataCloud” [2], an EC H2020 project targeting among other things high-level deployment of applications on hybrid Clouds, and “Open City Platform”[3], an Italian project aiming to provide open Cloud solutions for Italian Public Administrations. We considered to use an orchestration service to hide the complex deployment of the application components, and to build an abstraction layer on top of the orchestration one. Through Heat [4] orchestration service, we prototyped a dynamic, on-demand, scalable platform of software components, based on OpenStack infrastructures. On top of the orchestration service we developed a prototype of a web interface exploiting the Heat APIs. The user can start an instance of the application without having knowledge about the underlying Cloud infrastructure and services. Moreover, the platform instance can be customized by choosing parameters related to the application such as the size of a File System or the number of instances of a NoSQL DB cluster. As soon as the desired platform is running, the web interface offers the possibility to scale some infrastructure components. In this contribution we describe the solution design and implementation, based on the application requirements, the details of the development of both the Heat templates and of the web interface, together with possible exploitation strategies of this work in Cloud data centers.

  8. Evaluating Data Abstraction Assistant, a novel software application for data abstraction during systematic reviews: protocol for a randomized controlled trial.

    PubMed

    Saldanha, Ian J; Schmid, Christopher H; Lau, Joseph; Dickersin, Kay; Berlin, Jesse A; Jap, Jens; Smith, Bryant T; Carini, Simona; Chan, Wiley; De Bruijn, Berry; Wallace, Byron C; Hutfless, Susan M; Sim, Ida; Murad, M Hassan; Walsh, Sandra A; Whamond, Elizabeth J; Li, Tianjing

    2016-11-22

    Data abstraction, a critical systematic review step, is time-consuming and prone to errors. Current standards for approaches to data abstraction rest on a weak evidence base. We developed the Data Abstraction Assistant (DAA), a novel software application designed to facilitate the abstraction process by allowing users to (1) view study article PDFs juxtaposed to electronic data abstraction forms linked to a data abstraction system, (2) highlight (or "pin") the location of the text in the PDF, and (3) copy relevant text from the PDF into the form. We describe the design of a randomized controlled trial (RCT) that compares the relative effectiveness of (A) DAA-facilitated single abstraction plus verification by a second person, (B) traditional (non-DAA-facilitated) single abstraction plus verification by a second person, and (C) traditional independent dual abstraction plus adjudication to ascertain the accuracy and efficiency of abstraction. This is an online, randomized, three-arm, crossover trial. We will enroll 24 pairs of abstractors (i.e., sample size is 48 participants), each pair comprising one less and one more experienced abstractor. Pairs will be randomized to abstract data from six articles, two under each of the three approaches. Abstractors will complete pre-tested data abstraction forms using the Systematic Review Data Repository (SRDR), an online data abstraction system. The primary outcomes are (1) proportion of data items abstracted that constitute an error (compared with an answer key) and (2) total time taken to complete abstraction (by two abstractors in the pair, including verification and/or adjudication). The DAA trial uses a practical design to test a novel software application as a tool to help improve the accuracy and efficiency of the data abstraction process during systematic reviews. Findings from the DAA trial will provide much-needed evidence to strengthen current recommendations for data abstraction approaches. The trial is registered

  9. Toward Millimagnitude Photometric Calibration (Abstract)

    NASA Astrophysics Data System (ADS)

    Dose, E.

    2014-12-01

    (Abstract only) Asteroid roation, exoplanet transits, and similar measurements will increasingly call for photometric precisions better than about 10 millimagnitudes, often between nights and ideally between distant observers. The present work applies detailed spectral simulations to test popular photometric calibration practices, and to test new extensions of these practices. Using 107 synthetic spectra of stars of diverse colors, detailed atmospheric transmission spectra computed by solar-energy software, realistic spectra of popular astronomy gear, and the option of three sources of noise added at realistic millimagnitude levels, we find that certain adjustments to current calibration practices can help remove small systematic errors, especially for imperfect filters, high airmasses, and possibly passing thin cirrus clouds.

  10. Spectrophotometry of Symbiotic Stars (Abstract)

    NASA Astrophysics Data System (ADS)

    Boyd, D.

    2017-12-01

    (Abstract only) Symbiotic stars are fascinating objects - complex binary systems comprising a cool red giant star and a small hot object, often a white dwarf, both embedded in a nebula formed by a wind from the giant star. UV radiation from the hot star ionizes the nebula, producing a range of emission lines. These objects have composite spectra with contributions from both stars plus the nebula and these spectra can change on many timescales. Being moderately bright, they lend themselves well to amateur spectroscopy. This paper describes the symbiotic star phenomenon, shows how spectrophotometry can be used to extract astrophysically useful information about the nature of these systems, and gives results for three symbiotic stars based on the author's observations.

  11. Experience with abstract notation one

    NASA Technical Reports Server (NTRS)

    Harvey, James D.; Weaver, Alfred C.

    1990-01-01

    The development of computer science has produced a vast number of machine architectures, programming languages, and compiler technologies. The cross product of these three characteristics defines the spectrum of previous and present data representation methodologies. With regard to computer networks, the uniqueness of these methodologies presents an obstacle when disparate host environments are to be interconnected. Interoperability within a heterogeneous network relies upon the establishment of data representation commonality. The International Standards Organization (ISO) is currently developing the abstract syntax notation one standard (ASN.1) and the basic encoding rules standard (BER) that collectively address this problem. When used within the presentation layer of the open systems interconnection reference model, these two standards provide the data representation commonality required to facilitate interoperability. The details of a compiler that was built to automate the use of ASN.1 and BER are described. From this experience, insights into both standards are given and potential problems relating to this development effort are discussed.

  12. Energy Abstracts for Policy Analysis. [DOE abstract journal

    SciTech Connect

    Thompson, L.M.

    1981-01-01

    Energy Abstracts for Policy Analysis (EAPA), while embracing all phases of energy analysis and development, is limited primarily to nontechnological or quasitechnological articles or reports having significant reference value. This selectivity in scope and coverage of EAPA is effected to emphasize the following: programmatic efforts; policy, legislative, and regulatory aspects; social, economic, and environmental impacts; regional and sectoral analyses, institutional factors, etc. Selection for EAPA is based strictly on content (substantive articles) and is made from Congressional committee prints; federal agency and department reports; regional commission and state and local government reports; periodicals, including trade journals and newsweeklies; conference proceedingsmore » and/or conference papers; books, including manuals, directories, encyclopedias, etc.; and documents from industrial firms, private institutes and foundations, educational institutions, societies, associations, etc. EAPA is available on an exchange basis to universities, research institutions, industrial firms, and publishers of energy information. Federal, state, and municipal agencies concerned with energy development, conservation, and usage may obtain EAPA free of charge. Inquiries should be directed to the Technical Information Center, P.O. Box 62, Oak Ridge, Tennessee 37830. EAPA is available to the public on a subscription basis, which includes 12 monthly issues plus the annual index. All items announced in EAPA exist as separate records on the DOE Energy Data Base.« less

  13. SEER*Educate: Use of Abstracting Quality Index Scores to Monitor Improvement of All Employees.

    PubMed

    Potts, Mary S; Scott, Tim; Hafterson, Jennifer L

    2016-01-01

    Integral parts of the Seattle-Puget Sound's Cancer Surveillance System registry's continuous improvement model include the incorporation of SEER*Educate into its training program for all staff and analyzing assessment results using the Abstracting Quality Index (AQI). The AQI offers a comprehensive measure of overall performance in SEER*Educate, which is a Web-based application used to personalize learning and diagnostically pinpoint each staff member's place on the AQI continuum. The assessment results are tallied from 6 abstracting standards within 2 domains: incidence reporting and coding accuracy. More than 100 data items are aligned to 1 or more of the 6 standards to build an aggregated score that is placed on a continuum for continuous improvement. The AQI score accurately identifies those individuals who have a good understanding of how to apply the 6 abstracting standards to reliably generate high quality abstracts.

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

    PubMed

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

    2018-02-01

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

  15. Pediatric Contact Dermatitis Registry Inaugural Case Data.

    PubMed

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

    2016-01-01

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

  16. The Three Mile Island Population Registry.

    PubMed

    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.

  17. 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

  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. Building a Diabetes Registry from the Veterans Health Administration's Computerized Patient Record System

    PubMed Central

    F. O. Kern, Elizabeth; Beischel, Scott; Stalnaker, Randal; Aron, David C.; Kirsh, Susan R.; Watts, Sharon A.

    2008-01-01

    Background Little information is available describing how to implement a disease registry from an electronic patient record system. The aim of this report is to describe the technology, methods, and utility of a diabetes registry populated by the Veterans Health Information Systems Architecture (VistA), which underlies the computerized patient record system of the Veterans Health Administration (VHA) in Veteran Affairs Integrated Service Network 10 (VISN 10). Methods VISN 10 data from VistA were mapped to a relational SQL-based data system using KB_SQL software. Operational definitions for diabetes, active clinical management, and responsible providers were used to create views of patient-level data in the diabetes registry. Query Analyzer was used to access the data views directly. Semicustomizable reports were created by linking the diabetes registry to a Web page using Microsoft asp.net2. A retrospective observational study design was used to analyze trends in the process of care and outcomes. Results Since October 2001, 81,227 patients with diabetes have enrolled in VISN 10: approximately 42,000 are currently under active management by VISN 10 providers. By tracking primary care visits, we assigned 91% to a clinic group responsible for diabetes care. In the Cleveland Veterans Affairs Medical Center (VAMC), the frequency of mean annual hemoglobin A1c levels ≥9% has declined significantly over 5 years. Almost 4000 patients have been seen in diabetes intervention programs in the Cleveland VAMC over the past 4 years. Conclusions A diabetes registry can be populated from the database underlying the VHA electronic patient record database system and linked to Web-based and ad hoc queries useful for quality improvement. PMID:19885172

  20. Quality registry, a tool for patient advantages - from a preventive caring perspective.

    PubMed

    Rosengren, Kristina; Höglund, Pär J; Hedberg, Berith

    2012-03-01

    The aim of this study was to describe nurses' experiences of a recently implemented quality register, Senior Alert, at two hospitals in Sweden. In Sweden, in recent decades, a system of national quality registries has been established in health and medical services for better outcomes for patients, professional development and a better functioning system. Senior Alert (SA) is one quality registry, aimed at preventing malnutrition, pressure ulcers and falls in elderly care. The study comprised a total of eight interviews with nurses working with SA at the ward level. The interviews were analysed using manifest qualitative content analysis. Respect for the individuals was a main concern in the study. All persons who were asked to participate in the study consented to do so. One category 'Patient Advantages' and three subcategories 'Conscious Persevering', 'Supporting Structure' and 'Committed Leadership' were identified to describe staff experiences of implementing SA. Implementation processes need to be sustainable at both staff and managerial levels. A key factor in implementing and using a quality registry in prevention care could be described as keeping the flame burning. However, further research is needed on how patient advantages could be developed using other quality registries in order to improve care from a patient perspective. The results of this study could help other organizations implement quality registries or other change processes, for example new guidelines and treatment. Strategies concerning organizational structure and committed leadership could increase the usefulness of knowledge systems on all levels, which could enable continuous learning and quality improvement in health care. © 2012 Blackwell Publishing Ltd.

  1. Using administrative claims to identify children with chronic conditions in a statewide immunization registry.

    PubMed

    Dombkowski, Kevin J; Costello, Lauren; Dong, Shiming; Clark, Sarah J

    2014-05-01

    To demonstrate the feasibility and utility of using administrative claims data from commercial health plans to establish a high-risk indicator in a statewide immunization registry for enrollees with chronic conditions. Retrospective cohort analysis. Administrative data were used to identify children with 1 or more chronic conditions enrolled in 2 commercial health plans during the 2008-2009 and 2009-2010 influenza seasons and matched with a statewide immunization registry. The proportion of cases that successfully matched and historical health services utilization, including influenza vaccinations and missed opportunities, were assessed. A total of 93% of children with chronic conditions identified through administrative claims were successfully matched with the statewide registry. Less than one-third of children received the seasonal influenza vaccine in either the 2008-2009 (29%) or 2009-2010 (32%) seasons; 30% of children received the H1N1 vaccination in 2009-2010. Most children in the 2008-2009 (63%) and 2009-2010 (63%) seasons had at least 1 missed opportunity for seasonal influenza vaccination. Younger children had the highest percentage of missed opportunities while adolescents had the lowest rate of missed opportunities for vaccination. Conclusions It is feasible to identify children with chronic conditions using administrative data and to link them with a statewide immunization registry. Low influenza vaccination rates and high occurrences of missed opportunities among children with chronic conditions suggest the utility of integrating administrative claims data with statewide registries to support various outreach mechanisms, including physician-focused and parent-targeted reminder/recall, based on target age to improve vaccination rates.

  2. Physical Oceanography Program Science Abstracts.

    DTIC Science & Technology

    1985-04-01

    substantial part of the database used by the U.S. Navy and the U.S. National Weather Service to generate, in real-time, subsurface tempera- ture maps...quality, 1ST database which incorporates GTS bathymessagss and on-sbip recordings from the Pacific for the period 1979 through 1983. Access to these data...Investigator: Stanley M. FlattE Frank S. Henyey INTERNAL-WAVE NONLINEAR INTERACTIONS BY THE EIKONAL METHOD We have been involved in the study of

  3. Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: a cross-sectional study.

    PubMed

    Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

    2008-05-14

    Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. We conducted two evaluations - one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry - of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11-17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were older at their first visit to

  4. Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: A cross-sectional study

    PubMed Central

    Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

    2008-01-01

    Background Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. Methods We conducted two evaluations – one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry – of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11–17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Results Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were

  5. Rationale and Design of the Registry for Stones of the Kidney and Ureter (ReSKU): A Prospective Observational Registry to Study the Natural History of Urolithiasis Patients

    PubMed Central

    Chang, Helena C.; Tzou, David T.; Usawachintachit, Manint; Duty, Brian D.; Hsi, Ryan S.; Harper, Jonathan D.; Sorensen, Mathew D.; Stoller, Marshall L.; Sur, Roger L.

    2016-01-01

    Abstract Objectives: Registry-based clinical research in nephrolithiasis is critical to advancing quality in urinary stone disease management and ultimately reducing stone recurrence. A need exists to develop Health Insurance Portability and Accountability Act (HIPAA)-compliant registries that comprise integrated electronic health record (EHR) data using prospectively defined variables. An EHR-based standardized patient database—the Registry for Stones of the Kidney and Ureter (ReSKU™)—was developed, and herein we describe our implementation outcomes. Materials and Methods: Interviews with academic and community endourologists in the United States, Canada, China, and Japan identified demographic, intraoperative, and perioperative variables to populate our registry. Variables were incorporated into a HIPAA-compliant Research Electronic Data Capture database linked to text prompts and registration data within the Epic EHR platform. Specific data collection instruments supporting New patient, Surgery, Postoperative, and Follow-up clinical encounters were created within Epic to facilitate automated data extraction into ReSKU. Results: The number of variables within each instrument includes the following: New patient—60, Surgery—80, Postoperative—64, and Follow-up—64. With manual data entry, the mean times to complete each of the clinic-based instruments were (minutes) as follows: New patient—12.06 ± 2.30, Postoperative—7.18 ± 1.02, and Follow-up—8.10 ± 0.58. These times were significantly reduced with the use of ReSKU structured clinic note templates to the following: New patient—4.09 ± 1.73, Postoperative—1.41 ± 0.41, and Follow-up—0.79 ± 0.38. With automated data extraction from Epic, manual entry is obviated. Conclusions: ReSKU is a longitudinal prospective nephrolithiasis registry that integrates EHR data, lowering the barriers to performing high quality clinical research and quality outcome assessments in

  6. WD1145+017 (Abstract)

    NASA Astrophysics Data System (ADS)

    Motta, M.

    2017-12-01

    (Abstract only) WD1145 is a 17th magnitude white dwarf star 570 light years away in Virgo that was discovered to have a disintegrating planetoid in close orbit by Andrew Vanderburg, a graduate student at Harvard CfA, while data mining the elucidate the nature of its rather bizarre transit light curves. I obtained multiple observations of WD1145 over the course of a year, and found a series of complex transit light curves that could only be interpreted as a ring complex or torus in close orbit around WD1145. Combined with data from other amateur astronomers, professional observations, and satellite data, it became clear that WD1145 has a small planetoid in close orbit at the Roche limit and is breaking apart, forming a ring of debris material that is then raining down on the white dwarf. The surface of the star is "polluted" by heavy metals, determined by spectroscopic data. Given that in the intense gravitational field of a white dwarf any heavy metals could not for long last on the surface, this confirms that we are tracking in real time the destruction of a small planet by its host star.

  7. Attracting Girls into Physics (abstract)

    NASA Astrophysics Data System (ADS)

    Gadalla, Afaf

    2009-04-01

    A recent international study of women in physics showed that enrollment in physics and science is declining for both males and females and that women are severely underrepresented in careers requiring a strong physics background. The gender gap begins early in the pipeline, from the first grade. Girls are treated differently than boys at home and in society in ways that often hinder their chances for success. They have fewer freedoms, are discouraged from accessing resources or being adventurous, have far less exposure to problem solving, and are not encouraged to choose their lives. In order to motivate more girl students to study physics in the Assiut governorate of Egypt, the Assiut Alliance for the Women and Assiut Education District collaborated in renovating the education of physics in middle and secondary school classrooms. A program that helps in increasing the number of girls in science and physics has been designed in which informal groupings are organized at middle and secondary schools to involve girls in the training and experiences needed to attract and encourage girls to learn physics. During implementation of the program at some schools, girls, because they had not been trained in problem-solving as boys, appeared not to be as facile in abstracting the ideas of physics, and that was the primary reason for girls dropping out of science and physics. This could be overcome by holding a topical physics and technology summer school under the supervision of the Assiut Alliance for the Women.

  8. SLAS Library Telescope Program (Abstract)

    NASA Astrophysics Data System (ADS)

    Small, J. S.

    2016-12-01

    (Abstract only) In the fall of 2014, I submitted to the members of the St. Louis Astronomical Society to take the $1,000 profit we had from a convention we had hosted and use it to purchase three telescopes to modify for a Library Telescope program that was invented by Mark Stowbridge and promoted by the New Hampshire Astronomical Society. I had met Mark at NEAF in 2012 when he was walking the floor demonstrating the telescope. We held meetings with three libraries, the St. Louis County Library system, the St. Louis Public Library system and an independent library in Kirkwood, Missouri. The response was overwhelming! SLCL responded with a request for ten telescopes and SLPL asked for five. We did our first build in October, 2014 and placed a total of eighteen telescopes. Since that time, SLAS has placed a total of eighty-eight telescopes in library systems around the St. Louis Metro area, expanding into neighboring counties and across the river in Illinois. In this talk, I will discuss how to approach this project and put it in place in your libraries!

  9. Handedness shapes children's abstract concepts.

    PubMed

    Casasanto, Daniel; Henetz, Tania

    2012-03-01

    Can children's handedness influence how they represent abstract concepts like kindness and intelligence? Here we show that from an early age, right-handers associate rightward space more strongly with positive ideas and leftward space with negative ideas, but the opposite is true for left-handers. In one experiment, children indicated where on a diagram a preferred toy and a dispreferred toy should go. Right-handers tended to assign the preferred toy to a box on the right and the dispreferred toy to a box on the left. Left-handers showed the opposite pattern. In a second experiment, children judged which of two cartoon animals looked smarter (or dumber) or nicer (or meaner). Right-handers attributed more positive qualities to animals on the right, but left-handers to animals on the left. These contrasting associations between space and valence cannot be explained by exposure to language or cultural conventions, which consistently link right with good. Rather, right- and left-handers implicitly associated positive valence more strongly with the side of space on which they can act more fluently with their dominant hands. Results support the body-specificity hypothesis (Casasanto, 2009), showing that children with different kinds of bodies think differently in corresponding ways. Copyright © 2011 Cognitive Science Society, Inc.

  10. An abstract approach to music.

    SciTech Connect

    Kaper, H. G.; Tipei, S.

    1999-04-19

    In this article we have outlined a formal framework for an abstract approach to music and music composition. The model is formulated in terms of objects that have attributes, obey relationships, and are subject to certain well-defined operations. The motivation for this approach uses traditional terms and concepts of music theory, but the approach itself is formal and uses the language of mathematics. The universal object is an audio wave; partials, sounds, and compositions are special objects, which are placed in a hierarchical order based on time scales. The objects have both static and dynamic attributes. When we realize amore » composition, we assign values to each of its attributes: a (scalar) value to a static attribute, an envelope and a size to a dynamic attribute. A composition is then a trajectory in the space of aural events, and the complex audio wave is its formal representation. Sounds are fibers in the space of aural events, from which the composer weaves the trajectory of a composition. Each sound object in turn is made up of partials, which are the elementary building blocks of any music composition. The partials evolve on the fastest time scale in the hierarchy of partials, sounds, and compositions. The ideas outlined in this article are being implemented in a digital instrument for additive sound synthesis and in software for music composition. A demonstration of some preliminary results has been submitted by the authors for presentation at the conference.« less

  11. In Situ Resource Utilization (ISRU 3) Technical Interchange Meeting: Abstracts

    NASA Technical Reports Server (NTRS)

    1999-01-01

    This volume contains abstracts that have been accepted for presentation at the In Situ Resource Utilization (ISRU III) Technical Interchange Meeting, February 11-12, 1999, hosted by the Lockheed Martin Astronautics Waterton Facility, Denver, Colorado. Administration and publication support for this meeting were provided by the staff of the Publications and Program Services Department at the Lunar and Planetary Institute.

  12. Scalable and Precise Abstraction of Programs for Trustworthy Software

    DTIC Science & Technology

    2017-01-01

    calculus for core Java. • 14 months: A systematic abstraction of core Java. • 18 months: A security auditor for core Java. • 24 months: A contract... auditor for full Java. • 42 months: A web-deployed service for security auditing. Approved for Public Release; Distribution Unlimited 4 4.0 RESULTS

  13. 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

  14. Clinical experience and practical skills: results from Mexico City's paramedic registry.

    PubMed

    Peralta, Luis M Pinet; Fraga, Juan M; Asensio, Enrique

    2008-01-01

    Trauma is a leading cause of death and disability in Mexico. Unintentional injuries, along with diabetes and heart disease, contribute to > 35% of the country's total mortality. Effective and efficient prehospital care of the conditions may improve outcomes. The objective of this paper was to determine if prehospital field experience (PFE) correlated with higher passing rates among candidates for the paramedic registry in Mexico City. This was a retrospective, cohort study using data from the Voluntary Registry of Prehospital Care Professionals (VRPHP) in Mexico City. The mean value for candidate age was 30.6 years and mean value for the years of PFE was 6.8 years (CI = 9-13 years). Most of the applicants were male and almost 90% were basic emergency medical services providers. Sixty-five percent of the candidates were from private, non-profit organizations, 73% were volunteers, and 19% had obtained a university degree. More than 57% had > 5 years of PFE, but the experience level did not correlate significantly with higher passing rates for the registry evaluation (chi2 = 1.66, p = 0.43). The results differed between the two years that the examination was offered (chi2 = 32.98, df = 1, p < 0.001, gamma = 0.54), regardless of gender, education, and years of experience. Previous field experience showed no correlation with passing rates, although the correlations improved between examination periods. The results may be used to support appropriate implementation of future health policies for prehospital emergency services.

  15. Using a State Birth Registry as a Quality Improvement Tool.

    PubMed

    Lannon, Carole; Kaplan, Heather C; Friar, Kelly; Fuller, Sandra; Ford, Susan; White, Beth; Besl, John; Paulson, John; Marcotte, Michael; Krew, Michael; Bailit, Jennifer; Iams, Jay

    2017-08-01

    Background  Birth registry data are universally collected, generating large administrative datasets. However, these data are typically not used for quality improvement (QI) initiatives in perinatal medicine because the quality and timeliness of the information is uncertain. Objective  We sought to identify and address causes of inaccuracy in recording birth registry information so that birth registry data could support statewide obstetrical quality initiatives in Ohio. Study Design  The Ohio Perinatal Quality Collaborative and the Ohio Department of Health Vital Statistics used QI techniques in 15 medium-sized maternity hospitals to identify and remove systemic sources of inaccuracy in birth registry data. The primary outcome was the rate of scheduled deliveries without medical indication between 37 0/7 and 38 6/7 weeks at participating hospitals from birth registry data. Results  Inaccurate birth registry data most commonly resulted from limited communication between clinical and medical record staff. The rate of scheduled births between 37 0/7 and 38 6/7 weeks' gestation without a documented medical indication as recorded in the birth registry declined by 35%. Conclusion  A QI initiative aimed at increasing the accuracy of birth registry information demonstrated the utility of these data for surveillance of perinatal outcomes and has led to ongoing efforts to support birth registrars in submitting accurate data. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

  16. 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…

  17. 15 CFR 995.21 - Registry of data users.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... do so by the CED or CEVAD). (b)(1) The registry shall include, but not be limited to: (i) Which NOAA 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 include...

  18. 76 FR 28403 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ... [Docket No. FMCSA-2008-0363] RIN 2126-AA97 National Registry of Certified Medical Examiners ACTION: Notice... by training providers in implementing the National Registry of Certified Medical Examiners (National... included minimum training requirements for medical examiners. The draft guidance announced by this notice...

  19. 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 other...

  20. CARESS: the Canadian registry of palivizumab.

    PubMed

    Mitchell, Ian; Paes, Bosco A; Li, Abby; Lanctôt, Krista L

    2011-08-01

    Palivizumab is indicated for respiratory syncytial virus (RSV) prophylaxis in high-risk children. However, relatively little is known about the current use, compliance, and outcomes associated with this medication. A prospective, observational, registry based on 27 sites, with monthly follow-up of infants at high risk for RSV who received at least 1 dose of palivizumab during the 2005-2009 RSV seasons. A total of 5286 children were enrolled (56.6% male; 71.7% white; average gestational age, 32.1 ± 5.5 weeks). Of them, 3741 patients (70.8%) were prophylaxed for prematurity only, 449 (8.5%) for bronchopulmonary dysplasia/chronic lung disease, 508 (9.6%) for congenital heart disease, and 588 (11.1%) for other reasons. Overall, 19,485 doses were given. On average, infants received 86.0% ± 28.4% of their expected number of injections; 71.2% of infants received their injections in the recommended time periods. Of the 5286 participants enrolled, 308 patients were hospitalized for respiratory tract illness (hospitalization rate, 5.8%). The RSV-hospitalization rate was calculated as 1.38%. Having siblings increased likelihood of hospitalization (66.9% vs. 55.7%, P < 0.005), and was significantly correlated with time to hospitalization in this cohort (P = 0.050). The overall RSV-hospitalization rate in our study was within the range found in previous reports (1.3%-5.3%), although it did not mimic the declining rates of the US Palivizumab Outcomes Registry. This could be due to increased testing for RSV when hospitalized and increasing rates of prophylaxis of infants with underlying medical disorders.

  1. I RBH - First Brazilian Hypertension Registry.

    PubMed

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

    2016-08-01

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

  2. Agency for toxic substances and disease registry

    SciTech Connect

    Not Available

    The congressional mandates under which the Agency for Toxic Substances and Disease Registry (ATSDR) operates are generally broad in scope, but very specific in intent. They concern the health effects of human exposure to hazardous substances in the environment. This report recounts the accomplishments in meeting specific mandates and indicates plans and directions for work to meet others. The report is organized by program area and covers the federal fiscal year 1987 (October 1, 1986 through September 30, 1987). Two items of importance were performed in FY 1987 by senior management at ATSDR that are not directly reportable by individualmore » program area: first, the priorities of the agency's programs were reordered, and second, the formation of an ATSDR Board of Scientific Counselors was initiated. The reordering of priorities reflects the agency's have in met certain mandates (such as completion of the first 25 toxicological profiles) and takes cognizance of other congressionally mandated deadlines (such as performing health assessments for all National Priorities List Superfund sites). The agency is establishing a Board of Scientific Counselors to provide advice and guidance on ATSDR's programs to ensure scientific quality, timeliness, utility, and dissemination of results. Specifically, the board will advise on the adequacy of science in ATSDR-supported research, emerging problems that require scientific investigation, accuracy and currency of science in ATSDR reports, and program areas to be emphasized and/or deemphasized. The Agency for Toxic Substances and Disease Registry continued , in FY 1987, to meet its mission of preventing of mitigating adverse human health effects and diminished quality of life resulting from exposure to hazardous substances in the environment. 156 refs.« less

  3. Prevalence and Incidence of Systemic Lupus Erythematosus in a Population-Based Registry of American Indian and Alaska Native People, 2007–2009

    PubMed Central

    Ferucci, Elizabeth D.; Johnston, Janet M.; Gaddy, Jasmine R.; Sumner, Lisa; Posever, James O.; Choromanski, Tammy L.; Gordon, Caroline; Lim, S. Sam; Helmick, Charles G.

    2015-01-01

    Objective Few studies have investigated the epidemiology of systemic lupus erythematosus (SLE) in American Indian and Alaska Native populations. The objective of this study was to determine the prevalence and incidence of SLE in the Indian Health Service (IHS) active clinical population in 3 regions of the US. Methods For this population-based registry within the IHS, the denominator consisted of individuals in the IHS active clinical population in 2007, 2008, and/or 2009 and residing in a community in 1 of 3 specified regions. Potential SLE cases were identified based on the presence of a diagnostic code for SLE or related disorder in the IHS National Data Warehouse. Detailed medical record abstraction was performed for each potential case. The primary case definition was documentation in the medical record of ≥4 of the revised American College of Rheumatology criteria for the classification of SLE. Prevalence was calculated for 2007, and the mean annual incidence was calculated for the years 2007 through 2009. Results The age-adjusted prevalence and incidence of SLE according to the primary definition were 178 per 100,000 person-years (95% confidence interval [95% CI] 157–200) and 7.4 per 100,000 person-years (95% CI 5.1–10.4). Among women, the age-adjusted prevalence was 271, and the age-adjusted incidence was 10.4. The prevalence was highest in women ages 50–59 years and in the Phoenix Area IHS. Conclusion The first population-based lupus registry in the US American Indian and Alaska Native population has demonstrated that the prevalence and incidence of SLE are high. Our estimates are as high as or higher than the rates reported in the US black population. PMID:24891315

  4. Energy Abstracts for Policy Analysis: a monthly abstract journal. Abstracts 1-225

    SciTech Connect

    Thompson, L.M..

    1983-01-01

    Energy Abstracts for Policy Analysis (EAPA), while embracing all phases of energy analysis and development, is limited primarily to nontechnological or quasitechnological articles or reports having significant reference value. This selectivity in scope and coverage of EAPA is effected to emphasize the following: programmatic efforts; policy, legislative, and regulatory aspects; social, economic, and environmental impacts; regional and sectoral analyses, institutional factors, etc. Selection for EAPA is based strictly on content (substantive articles) and is made from Congressional committee prints; federal agency and department reports; regional commission and state and local government reports; periodicals, including trade journals and newsweeklies; conference proceedingsmore » and/or conference papers; books, including manuals, directories, encyclopedias, etc.; and documents from industrial firms, private institutes and foundations, educational institutions, societies, associations, etc. EAPA is available to DOE offices and contractors on request, and on an exchange basis to universities, research institutions, industrial firms, and publishers of energy information. Inquiries should be directed to the Technical Information Center, P.O. Box 62, Oak Ridge, Tennessee 37830. EAPA is available to the public on a subscription basis from the Superintendent of Documents, US Government Printing Office, Washington, DC 20402. The subscription rate for the 12 monthly issues plus the annual index is $70.00 for domestic subscribers and $87.50 for subscribers outside the North American continent.« less

  5. Strategies for successful trauma registry implementation in low- and middle-income countries-protocol for a systematic review.

    PubMed

    Paradis, Tiffany; St-Louis, Etienne; Landry, Tara; Poenaru, Dan

    2018-02-21

    The benefits of trauma registries have been well described. The crucial data they provide may guide injury prevention strategies, inform resource allocation, and support advocacy and policy. This has been shown to reduce trauma-related mortality in various settings. Trauma remains a leading cause of mortality in low- and middle-income countries (LMICs). However, the implementation of trauma registries in LMICs can be challenging due to lack of funding, specialized personnel, and infrastructure. This study explores strategies for successful trauma registry implementation in LMICs. The protocol was registered a priori (CRD42017058586). A peer-reviewed search strategy of multiple databases will be developed with a senior librarian. As per PRISMA guidelines, first screen of references based on abstract and title and subsequent full-text review will be conducted by two independent reviewers. Disagreements that cannot be resolved by discussion between reviewers shall be arbitrated by the principal investigator. Data extraction will be performed using a pre-defined data extraction sheet. Finally, bibliographies of included articles will be hand-searched. Studies of any design will be included if they describe or review development and implementation of a trauma registry in LMICs. No language or period restrictions will be applied. Summary statistics and qualitative meta-narrative analyses will be performed. The significant burden of trauma in LMIC environments presents unique challenges and limitations. Adapted strategies for deployment and maintenance of sustainable trauma registries are needed. Our methodology will systematically identify recommendations and strategies for successful trauma registry implementation in LMICs and describe threats and barriers to this endeavor. The protocol was registered on the PROSPERO international prospective register of systematic reviews ( CRD42017058586 ).

  6. A Suggested Model for Building Robust Biomedical Implants Registries.

    PubMed

    Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa

    2017-01-01

    Registries are an essential source of information for clinical and non-clinical decision-makers; because they provide evidence for post-market clinical follow-up and early detection of safety signals for biomedical implants. Yet, many of todays biomedical implants registries are facing a variety of challenges relating to a poorly designed dataset, the reliability of inputted data and low clinician and patient participation. The purpose of this paper is to present a best practice model for the implementation and use of biomedical implants registries to monitor the safety and effectiveness of implantable medical devices. Based on a literature review and an analysis of multiple national relevant registries, we identified six factors that address contemporary challenges and are believed to be the keys for building a successful biomedical implants registry, which include: sustainable development, international comparability, data reliability, purposeful design, ease of patient participation, and collaborative development at the national level.

  7. Abstraction and reformulation in artificial intelligence.

    PubMed Central

    Holte, Robert C.; Choueiry, Berthe Y.

    2003-01-01

    This paper contributes in two ways to the aims of this special issue on abstraction. The first is to show that there are compelling reasons motivating the use of abstraction in the purely computational realm of artificial intelligence. The second is to contribute to the overall discussion of the nature of abstraction by providing examples of the abstraction processes currently used in artificial intelligence. Although each type of abstraction is specific to a somewhat narrow context, it is hoped that collectively they illustrate the richness and variety of abstraction in its fullest sense. PMID:12903653

  8. Abstraction and reformulation in artificial intelligence.

    PubMed

    Holte, Robert C; Choueiry, Berthe Y

    2003-07-29

    This paper contributes in two ways to the aims of this special issue on abstraction. The first is to show that there are compelling reasons motivating the use of abstraction in the purely computational realm of artificial intelligence. The second is to contribute to the overall discussion of the nature of abstraction by providing examples of the abstraction processes currently used in artificial intelligence. Although each type of abstraction is specific to a somewhat narrow context, it is hoped that collectively they illustrate the richness and variety of abstraction in its fullest sense.

  9. Geophysical abstracts 167, October-December 1956

    USGS Publications Warehouse

    Rabbitt, Mary C.; Vitaliano, Dorothy B.; Vesselowsky, S.T.; ,

    1956-01-01

    Geophysical Abstracts includes abstracts of technical papers and books on the physics of the solid earth, the application of physical methods and techniques to geologic problems, and geophysical exploration. The table of contents, which is alphabetically arranged, shows the material covered.Abstracts are prepared only of material that is believed to be generally available. Ordinarily abstracts are not published of material with limited circulation (such as dissertations, open-file reports, or memoranda) or of other papers presented orally at meetings unless summaries of substantial length are published. Abstracts of papers in Japanese and Chinese are based on abstracts or summaries in a western language accompanying the paper.

  10. Geophysical abstracts 164, January-March 1956

    USGS Publications Warehouse

    Rabbitt, Mary C.; Vitaliano, Dorothy B.; Vesselowsky, S.T.; ,

    1956-01-01

    Geophysical Abstracts includes abstracts of technical papers and books on the physics of the solid earth, the application of physical methods and techniques to geologic problems, and geophysical exploration. A new table of contents, alphabetically arranged, has been adapted to show more clearly the material covered.Abstracts are prepared only of material that is believed to be generally available. Ordinarily abstracts are not published of material with limited circulation (such as dissertations, open-file reports, or memoranda) or of papers presented orally at meetings unless summaries of substantial length are published. Abstracts of papers in Japanese and Chinese are based on abstracts or summaries in a western language accompanying the paper.

  11. Geophysical abstracts 166, July-September 1956

    USGS Publications Warehouse

    Rabbitt, Mary C.; Vitaliano, Dorothy B.; Vesselowsky, S.T.; ,

    1956-01-01

    Geophysical Abstracts includes abstracts of technical papers and books on the physics of the solid earth, the application of physical methods and techniques to geologic problems, and geophysical exploration. The table of contents, which is alphabetically arranged, shows the material covered.Abstracts are prepared only of material that is believed to be generally available. Ordinarily abstracts are not published of material with limited circulation (such as dissertations, open-file reports, or memoranda) or of other papers presented orally at meetings unless summaries of substantial length are published. Abstracts of papers in Japanese and Chinese are based on abstracts or summaries in a western language accompanying the paper.

  12. Geophysical abstracts 165, April-June 1956

    USGS Publications Warehouse

    Rabbitt, Mary C.; Vitaliano, Dorothy B.; Vesselowsky, S.T.; ,

    1956-01-01

    Geophysical Abstracts includes abstracts of technical papers and books on the physics of the solid earth, the application of physical methods and techniques to geologic problems, and geophysical exploration. The table of contents, which is alphabetically arranged, shows the material covered.Abstracts are prepared only of material that is believed to be generally available. Ordinarily abstracts are not published of material with limited circulation (such as dissertations, open-file reports, or memoranda) or of other papers presented orally at meetings unless summaries of substantial length are published. Abstracts of papers in Japanese and Chinese are based on abstracts or summaries in a western language accompanying the paper.

  13. Coding of obesity in administrative hospital discharge abstract data: accuracy and impact for future research studies.

    PubMed

    Martin, Billie-Jean; Chen, Guanmin; Graham, Michelle; Quan, Hude

    2014-02-13

    Obesity is a pervasive problem and a popular subject of academic assessment. The ability to take advantage of existing data, such as administrative databases, to study obesity is appealing. The objective of our study was to assess the validity of obesity coding in an administrative database and compare the association between obesity and outcomes in an administrative database versus registry. This study was conducted using a coronary catheterization registry and an administrative database (Discharge Abstract Database (DAD)). A Body Mass Index (BMI) ≥30 kg/m2 within the registry defined obesity. In the DAD obesity was defined by diagnosis codes E65-E68 (ICD-10). The sensitivity, specificity, negative predictive value (NPV) and positive predictive value (PPV) of an obesity diagnosis in the DAD was determined using obesity diagnosis in the registry as the referent. The association between obesity and outcomes was assessed. The study population of 17380 subjects was largely male (68.8%) with a mean BMI of 27.0 kg/m2. Obesity prevalence was lower in the DAD than registry (2.4% vs. 20.3%). A diagnosis of obesity in the DAD had a sensitivity 7.75%, specificity 98.98%, NPV 80.84% and PPV 65.94%. Obesity was associated with decreased risk of death or re-hospitalization, though non-significantly within the DAD. Obesity was significantly associated with an increased risk of cardiac procedure in both databases. Overall, obesity was poorly coded in the DAD. However, when coded, it was coded accurately. Administrative databases are not an optimal datasource for obesity prevalence and incidence surveillance but could be used to define obese cohorts for follow-up.

  14. Differences in the Korea Acute Myocardial Infarction Registry Compared with Western Registries

    PubMed Central

    2017-01-01

    The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglyceride and lower high-density lipoprotein cholesterol levels. Percutaneous coronary intervention (PCI) rates were high for both STEMI and non-ST-elevation myocardial infarction (NSTEMI) with higher use of drug-eluting stents (DESs). DES were effective and safe without increased risk of stent thrombosis in Korean AMI patients. Triple antiplatelet therapy, consisting of aspirin, clopidogrel, and cilostazol, was effective in preventing adverse clinical outcomes after PCI. Statin therapy was effective in Korean AMI patients, including those with very low levels of low-density lipoprotein cholesterol and those with cardiogenic shock. The KAMIR score had a greater predictive value than Thrombolysis in Myocardial Infarction (TIMI) and Global Registry of Acute Coronary Events (GRACE) scores for long-term mortality in AMI patients. Based on these results, the KAMIR will be instrumental for establishing new therapeutic strategies and effective methods for secondary prevention of AMI and guidelines for Asian patients. PMID:29035427

  15. The Cystic Fibrosis Foundation Patient Registry. Design and Methods of a National Observational Disease Registry.

    PubMed

    Knapp, Emily A; Fink, Aliza K; Goss, Christopher H; Sewall, Ase; Ostrenga, Josh; Dowd, Christopher; Elbert, Alexander; Petren, Kristofer M; Marshall, Bruce C

    2016-07-01

    The Cystic Fibrosis Foundation Patient Registry (CFFPR) is an ongoing patient registry study that collects longitudinal demographic, clinical, and treatment information about persons with cystic fibrosis (CF) in the United States. CF is a life-shortening genetic disorder that occurs in approximately 1 in 3,500 births in the United States. High-quality observational data is important for clinical research, quality improvement, and clinical management. To describe the data collection, patient population, and key limitations of the CFFPR. Inclusion criteria for the CFFPR include diagnosis with CF or a CFTR-associated disorder, care at an accredited care center program, and provision of informed consent. Data from clinic visits and hospitalizations are collected through a secure website. Loss to follow-up and generalizability were examined using several methods. The accuracy of CFFPR data was evaluated with an audit of 2012 CFFPR data compared to the medical record. Since 1986, the CFFPR contains the records of 48,463 individuals with CF. Participation among individuals seen at accredited care centers is high, and loss to follow-up is low. An audit of 2012 CFFPR data suggests that the CFFPR contains 95% of clinic visits and 90% of hospitalizations found in the medical record for these patients, and nearly all of the audited fields were highly accurate. Registries such as the CFFPR are important tools for research, clinical care, and tracking incidence, mortality and population trends.

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

    PubMed

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

    2013-08-22

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

  17. Scientific meeting abstracts: significance, access, and trends.

    PubMed Central

    Kelly, J A

    1998-01-01

    Abstracts of scientific papers and posters that are presented at annual scientific meetings of professional societies are part of the broader category of conference literature. They are an important avenue for the dissemination of current data. While timely and succinct, these abstracts present problems such as an abbreviated peer review and incomplete bibliographic access. METHODS: Seventy societies of health sciences professionals were surveyed about the publication of abstracts from their annual meetings. Nineteen frequently cited journals also were contacted about their policies on the citation of meeting abstracts. Ten databases were searched for the presence of meetings abstracts. RESULTS: Ninety percent of the seventy societies publish their abstracts, with nearly half appearing in the society's journal. Seventy-seven percent of the societies supply meeting attendees with a copy of each abstract, and 43% make their abstracts available in an electronic format. Most of the journals surveyed allow meeting abstracts to be cited. Bibliographic access to these abstracts does not appear to be widespread. CONCLUSIONS: Meeting abstracts play an important role in the dissemination of scientific knowledge. Bibliographic access to meeting abstracts is very limited. The trend toward making meeting abstracts available via the Internet has the potential to give a broader audience access to the information they contain. PMID:9549015

  18. Selected abstracts on aviation weather hazard research

    DOT National Transportation Integrated Search

    1996-01-01

    This paper consists of bibliographic information and abstracts for literature on the topics of weather-related aviation hazards. These abstracts were selected from reports written for the ASR-9, ITWS, TDWR programs, sponsored by the Federal Aviation ...

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

    PubMed

    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

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

  20. 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

  1. The Abstraction Process of Limit Knowledge

    ERIC Educational Resources Information Center

    Sezgin Memnun, Dilek; Aydin, Bünyamin; Özbilen, Ömer; Erdogan, Günes

    2017-01-01

    The RBC+C abstraction model is an effective model in mathematics education because it gives the opportunity to analyze research data through cognitive actions. For this reason, we aim to examine the abstraction process of the limit knowledge of two volunteer participant students using the RBC+C abstraction model. With this aim, the students'…

  2. Writing a Structured Abstract for the Thesis

    ERIC Educational Resources Information Center

    Hartley, James

    2010-01-01

    This article presents the author's suggestions on how to improve thesis abstracts. The author describes two books on writing abstracts: (1) "Creating Effective Conference Abstracts and Posters in Biomedicine: 500 tips for Success" (Fraser, Fuller & Hutber, 2009), a compendium of clear advice--a must book to have in one's hand as one prepares a…

  3. Tips to Understanding and Writing Manuscript Abstracts

    ERIC Educational Resources Information Center

    Plakhotnik, Maria S.

    2017-01-01

    An abstract represents a short summary of key elements of the manuscript. The purpose of this essay is to discuss the function, contents, and types of manuscript abstracts. The essay concludes with a few tips for authors to writing effective abstracts.

  4. [The contribution of the Italian association of cancer registries (AIRTUM)].

    PubMed

    Crocetti, Emanuele; Buzzoni, Carlotta

    2016-01-01

    The study of cluster requires the ability to identify, with accuracy and completeness, the health events of interest and their geographical location and time of occurrence. For rare and complex diseases, such as childhood cancers, it is possible to observe a significant health migration from the place of residence, which makes the detection even more complex. The best tool to identify these rare diseases is represented by cancer registries (CRs). In fact, CRs collect, through many sources, information related to tumours that arise in the population resident in their areas of activity. The number of the sources of information has increased thanks to the computerization of health services. The availability of multiple sources of information increases the completeness of data collection overcoming the limits of a single source, and makes it possible to describe the diagnostic-therapeutic course and the outcome of the cases. Among all data sources, for childhood cancers the model 1.01, which summarize the clinical information of the cases treated in one of the Italian Association of paediatric haematology and oncology (AIEOP) centres, is relevant. Moreover, CRs produce reliable and comparable data due to the use of international rules and classifications for the definition of the topography and morphology of cancer, for the date of diagnosis, and for quality checks. In Italy, the Italian association of cancer registries (AIRTUM) coordinates the activities of 45 population CRs, both general and specialized (by age or tumour type). AIRTUM involves a population of over 6.7 million citizens under the age of 20 years, approximately 60% of the total resident population. AIRTUM plays a role of coordination, support, and harmonization for Italian CRs through training, accreditation, and a shared database, it promotes and participates in national and international collaboration involving scientific societies (AIEOP, Italian Association of medical oncology - AIOM, Italian

  5. National Dyslipidemia Registry of the Spanish Arteriosclerosis Society: Current status.

    PubMed

    Pérez-Calahorra, Sofía; Sánchez-Hernández, Rosa M; Plana, Núria; Valdivielso, Pedro; Civeira, Fernando

    Clinical registries are a very effective tool to verify the usual clinical practice, to compare clinical strategies and to improve the knowledge of diagnostic and therapeutic new procedures. The National Registry of Dyslipemias of the Spanish Society of Arteriosclerosis (SEA) is an on-line, retrospective and prospective database where the different Spanish lipid units accredited by the SEA introduce data from patients with disorders of lipid metabolism. The registry was created in 2013, and since then clinical, analytical, genetic and evolutionary data of 4,449 patients have been introduced until June 2017. In the last year the registry has given rise to a considerable number of international publications and there are several more in progress. An ambitious incentive plan for inclusion of patients has been initiated to get the SEA registry as a global reference that helps to improve the knowledge and clinical management of these patients. From the coordinating group of the registry we encourage all SEA partners to collaborate in the multiple forms that the registry allows, and to make it an international scientific reference. Copyright © 2017. Publicado por Elsevier España, S.L.U.

  6. Decision counseling and participation in a pancreas cancer registry.

    PubMed

    Myers, Ronald; Lavu, Harish; Keith, Scott W; Kelly, Heidi; O'Rourke, Nadine; Cocroft, James; Quinn, Anna; Potluri, Vishnu; Yeo, Charles J

    2014-01-01

    Cancer registries play a vital role in research, as they provide important data that can be used to assess disease etiology and risk. Specialty registries can help to address the need for information on defined cancer types. However, achieving high rates of participation in such registries is problematic.We studied the impact of decision support on patient participation in a hospital-based pancreas cancer registry, the Jefferson Pancreas Tumor Registry (JPTR). In this study, we assembled a nonrandomized cohort of 40 patients, of whom 20 were exposed to the intervention and 20 were exposed to routine recruiting methods. Patients in the control group were invited to join the JPTR; while those in the intervention group were also invited to join the JPTR, and received decision support related to participation. Registry participation was assessed at 90 days. At baseline, patient gender, race, and stage of pancreatic cancer did not vary significantly between study groups. Overall, participation in the intervention group was significantly higher (P = 0.01) than in the control group (55% and 10%, respectively). In the intervention group, altruism was the major factor motivating patient participation, while patient concerns related to treatment recovery, registration time and complexity, and the confidentiality of registry data discouraged participation.

  7. Library information services.

    NASA Astrophysics Data System (ADS)

    Michold, U.; Cummins, M.; Watson, J. M.; Holmquist, J.; Shobbrook, R.

    Contents: library catalogs and holdings; indexing and abstract services; preprint services; electronic journals and newsletters; alerting services; commercial databases; informal networking; use of a thesaurus for on-line searching. An extensive list of access pointers for library catalogs and services, electronic newsletters, and publishers and bookshops is enclosed.

  8. Patient-Centered Research Abstracts

    PubMed Central

    Swenson, SL; Shapiro, S; Cunningham, C; Gourevitch, M

    2000-01-01

    PURPOSE AIDS continues to devastate urban communities, particularly among marginally-housed, ethnic minority, and drug-using populations. This study (1) describes access to comprehensive medical care, quality of HIV-related care, and attitudes regarding health among HIV-infected residents of single-room occupancy (SRO) hotels and (2) explores predictors of the use of pneumocystis carinii pneumonia (PCP) prophylaxis and highly-active antiretroviral therapy (HAART). METHODS We conducted a cross-sectional, community-based study of 69 Bronx SRO hotel residents during May 1998. Utilizing door-to-door recruitment, we administered a 41-item, anonymous questionnaire to assess participants' demographic characteristics, level of illness and health care utilization, use of HIV-related therapies, and perceptions of their own health and medical care. RESULTS Of respondents, 65% identified as African-American or Black, 22% as Puerto Rican, and 13% as White or Other. The median age was 42; 68% were male, and 38% were high school graduates. Most individuals were marginally-housed (median stay = 9 months). Almost all participants (96%) paid for medical services via Medicaid. Of the 93% with HIV infection, 44% had been hospitalized at least once in the past year, 72% reported a history of AIDS-defining opportunistic infections, and the median CD4 count was 214. Over two-thirds were actively using drugs and/or alcohol. Among HIV-infected residents, 81% had seen a doctor in the last three months. However, only 67% felt they had a "regular" physician, and 48% felt their access to medical care was average to very poor. Among eligible HIV-infected persons, only 39% had taken HAART and 73% had taken PCP prophylaxis in the last week. Predictors for the use of HAART included absence of active cocaine and/or crack use (RR = 3.91; 95% CI 1.03–14.8; p < .03), use of PCP prophylaxis (RR = 5.69; 95% CI .85–38.1; p < .03) and the belief that HAART "can help people with AIDS" (RR = 1.75; 95

  9. Establishing of National Birth Defects Registry in Thailand.

    PubMed

    Pangkanon, Suthipong; Sawasdivorn, Siraporn; Kuptanon, Chulaluck; Chotigeat, Uraiwan; Vandepitte, Warunee

    2014-06-01

    Deaths attributed to birth defects are a major cause of infant and under-five mortality as well as lifetime disabilities among those who survive. In Thailand, birth defects contribute to 21% of neonatal deaths. There is currently no systematic registry for congenital anomalies in Thailand. Queen Sirikit National Institute of Child Health has initiated a Thailand Birth Defects Registry to capture birth defects among newborn infants. To establish the national birth defects registry in order to determine the burden of birth defects in Thailand. The birth defects data come from four main sources: National Birth Registry Database; National Health Security Office's reimbursement database; Online Birth Defect Registry Database designed to capture new cases that were detected later; and birth defects data from 20 participated hospitals. All data are linked by unique 13-digit national identification number and International Classification of Diseases (ICD)-10 codes. This registry includes 19 common structural birth defects conditions and pilots in 20 hospitals. The registry is hospital-based, hybrid reporting system, including only live births whose information was collected up to 1 year of age. 3,696 infants out of 67,813 live births (8.28% of total live births in Thailand) were diagnosed with congenital anomalies. The prevalence rate of major anomalies was 26.12 per 1,000 live births. The five most common birth defects were congenital heart defects, limb anomalies, cleft lip/cleft palate, Down syndrome, and congenital hydrocephalus respectively. The present study established the Birth Defects Registry by collecting data from four databases in Thailand. Information obtained from this registry and surveillance is essential in the planning for effective intervention programs for birth defects. The authors suggest that this program should be integrated in the existing public health system to ensure sustainability.

  10. Clarifying the abstracts of systematic literature reviews*

    PubMed Central

    Hartley, James

    2000-01-01

    Background: There is a small body of research on improving the clarity of abstracts in general that is relevant to improving the clarity of abstracts of systematic reviews. Objectives: To summarize this earlier research and indicate its implications for writing the abstracts of systematic reviews. Method: Literature review with commentary on three main features affecting the clarity of abstracts: their language, structure, and typographical presentation. Conclusions: The abstracts of systematic reviews should be easier to read than the abstracts of medical research articles, as they are targeted at a wider audience. The aims, methods, results, and conclusions of systematic reviews need to be presented in a consistent way to help search and retrieval. The typographic detailing of the abstracts (type-sizes, spacing, and weights) should be planned to help, rather than confuse, the reader. PMID:11055300

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

    PubMed

    Lee, Tsung Dao

    2002-08-01

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

  12. A microcomputer-based transplantation registry.

    PubMed

    Anção, M S; Sesso, R; Draibe, S A; Sigulem, D

    1996-01-01

    We describe a microcomputer-based program developed for the Brazilian Kidney Transplant Registry. The system can construct life tables and survival curves online, without the need to export the database. From 1987 through 1993, 6069 kidney transplants were reported; 3485 (57.4%) were from living donors and 2584 from cadavers. The proportion of cadaveric transplants increased from 28.5% in 1987 to 58.1% in 1993. Overall kidney transplantation activity was 8.1 patients per million population per year. Sixty-four percent of the patients were male, and 71% were white. The mean age was 33.4 years. The primary renal diseases most frequently reported were glomerulonephritis (43.6%) and hypertensive renal disease (13.6%). Only 3.6% of the recipients were diabetic. Patient and graft survival rates have improved in recent years. We expect that cadaveric organ procurement programs will continue to develop in our country, increasing the number of organ transplantations and creating a more equal distribution of cadaveric organs.

  13. The transmyocardial laser revascularization international registry report.

    PubMed

    Burns, S M; Sharples, L D; Tait, S; Caine, N; Wallwork, J; Schofield, P M

    1999-01-01

    This report aimed to provide an analysis of the data submitted from Europe and Asia on transmyocardial laser revascularization. Prospective data was recorded on 967 patients with intractable angina not amenable to conventional revascularization in 21 European and Asian centres performing transmyocardial laser revascularization using the PLC Medical Systems CO2 laser. Patient characteristics, operative details and early complications following transmyocardial laser revascularization were recorded. The in-hospital death rate was 9.7% (95% confidence interval 7.8% to 11.6%). Other early complications were consistent with similar cardiothoracic surgical procedures. There was a decrease of two or more Canadian Cardiovascular Score angina classes in 47.3%, 45.4% and 34.0% of survivors at 3, 6 and 12 months follow-up, respectively (P=0.001 for each). Treadmill exercise time increased by 42 s at 3 months (P=0.008), 1 min 43 s at 6 months (P<0.001) and 1 min 50 s at 12 months (P<0.001) against pre-operative times of 6 min. Uncontrolled registry data suggest that transmyocardial laser revascularization may lead to a decrease in angina and improved exercise tolerance. It does, however, have a risk of peri-operative morbidity and mortality. Definitive results from randomized controlled trials are awaited.

  14. 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.

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

    PubMed

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

    2018-04-01

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

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

    PubMed

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

    2015-06-01

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

  17. Patient care outcomes of a tobacco use registry in an academic family practice.

    PubMed

    Ripley-Moffitt, Carol; Neutze, Dana; Gwynne, Mark; Goldstein, Adam O

    2015-01-01

    While the potential benefit of a chronic disease registry for tobacco use is great, outcome reports have not been generated. We examined the effect of implementing a tobacco use registry, including a decision support tool, on treatment outcomes within an academic family medicine clinic. A chart review of 200 patients who smoked and attended the clinic before and after registry implementation assessed the number of patients with clinic notes documenting (1) counseling for tobacco use, (2) recommendations for cessation medication, (3) a set quit date, (4) referrals to the on-site Nicotine Dependence Program (NDP) and/or QuitlineNC, and (5) pneumococcal vaccine. Data from the NDP, QuitlineNC, and clinic billing records before and after implementation compared the number of clinic-generated QuitlineNC fax referrals, new scheduled appointments for the NDP, and visits coded for tobacco counseling reimbursement. Significant increases in documentation occurred across most chart review variables. Significant increases in the number of clinic-generated fax referrals to QuitlineNC (from 27 to 96), initial scheduled appointments for the NDP (from 84 to 148), and coding for tobacco counseling (from 101 to 287) also occurred when compared with total patient visits during the same time periods. Patient attendance at the NDP (52%) and acceptance of QuitlineNC services (31%) remained constant. The tobacco use registry's decision support tool increased evidenced-based tobacco use treatment (referrals, medications, and counseling) for patients at an academic family medicine clinic. This novel tool offers standardized care for all patients who use tobacco, ensuring improved access to effective tobacco use counseling and medication treatments. © Copyright 2015 by the American Board of Family Medicine.

  18. End stage renal disease in Brunei Darussalam - report from the first Brunei Dialysis Transplant Registry (BDTR).

    PubMed

    Tan, Jackson

    2013-09-01

    The Brunei Dialysis and Transplant Registry (BDTR) was established in 2011 to collect data from patients undergoing renal replacement therapy (RRT) in Brunei Darussalam. The chief aims of the registry are to obtain general demographic data for RRT patients and to determine disease burden attributable to End Stage Renal Disease (ESRD). The registry population comprises of all ESRD patients treated in Brunei Darussalam. Data domains include general demographic data, medical history, ESRD etiological causes, laboratory investigations, dialysis treatment and outcomes. There were 545 prevalent RRT patients in Brunei at the end of 2011. The incidence and prevalence of ESRD were 265 and 1250 per million population. Hemodialysis (HD), Peritoneal Dialysis (PD) and Transplant comprised of 83%, 11% and 6% of the RRT population, respectively. Diabetes mellitus accounted for 57% of all new incident cases. The mean serum hemoglobin, phosphate, calcium and iPTH were 11.0 ± 1.6 g/dL, 1.9 ± 0.5 mmol/L, 2.3 ± 0.2 mmol/L and 202.5 ± 323.4 ng/mL. Dialysis adequacy for HD and PD were 65.1 (urea reduction ratio) and 2.0 ± 0.3 (Kt/v). 71 % of all prevalent HD had functioning AV fistulae and the peritonitis incidence was one in 24.5 patient-month/episode. The first BDTR has identified some deficiencies in the renal services in Brunei. However, it signals an important milestone for the establishment of benchmarked renal practice in the country. We hoped to maintain and improve our registry for years to come and will strive to align our standards to acceptable international practice.

  19. The Psoriatic Arthritis Registry of Turkey: results of a multicentre registry on 1081 patients.

    PubMed

    Kalyoncu, Umut; Bayindir, Özün; Ferhat Öksüz, Mustafa; Doğru, Atalay; Kimyon, Gezmiş; Tarhan, Emine Figen; Erden, Abdulsamet; Yavuz, Şule; Can, Meryem; Çetin, Gözde Yıldırım; Kılıç, Levent; Küçükşahin, Orhan; Omma, Ahmet; Ozisler, Cem; Solmaz, Dilek; Bozkirli, Emine Duygu Ersözlü; Akyol, Lütfi; Pehlevan, Seval Masatlıoğlu; Gunal, Esen Kasapoglu; Arslan, Fatos; Yılmazer, Barış; Atakan, Nilgun; Aydın, Sibel Zehra

    2017-02-01

    The aim was to assess the characteristics of PsA, find out how well the disease is controlled in real life, demonstrate the treatments and identify the unmet needs. The PsA registry of Turkey is a multicentre Web-based registry established in 2014 and including 32 rheumatology centres. Detailed data regarding demographics for skin and joint disease, disease activity assessments and treatment choices were collected. One thousand and eighty-one patients (64.7% women) with a mean (sd) PsA duration of 5.8 (6.7) years were enrolled. The most frequent type of PsA was polyarticular [437 (40.5%)], followed by oligoarticular [407 (37.7%)] and axial disease [372 (34.4%)]. The mean (sd) swollen and tender joint counts were 1.7 (3) and 3.6 (4.8), respectively. Of these patients, 38.6% were on conventional synthetic DMARD monotherapy, 7.1% were on anti-TNF monotherapy, and 22.5% were using anti-TNF plus conventional synthetic DMARD combinations. According to DAS28, 86 (12.4%) patients had high and 105 (15.2%) had moderate disease activity. Low disease activity was achieved in 317 (45.7%) patients, and 185 (26.7%) were in remission. Minimal disease activity data could be calculated in 247 patients, 105 of whom (42.5%) had minimal disease activity. The major differences among sexes were that women were older and had less frequent axial disease, more fatigue, higher HAQ scores and less remission. The PsA registry of Turkey had similarities with previously published registries, supporting its external validity. The finding that women had more fatigue and worse functioning as well as the high percentage of active disease state highlight the unmet need in treatment of PsA. © The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  20. 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

  1. Functional requirements regarding medical registries--preliminary results.

    PubMed

    Oberbichler, Stefan; Hörbst, Alexander

    2013-01-01

    The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

  2. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... retrieved using the System for Award Management (SAM) search tool, which can be accessed via https://www...”. Contractors are required to register with SAM in order to gain access to the Disaster Response Registry. [74...

  3. 48 CFR 26.205 - Disaster Response Registry.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... retrieved using the System for Award Management (SAM) search tool, which can be accessed via https://www...”. Contractors are required to register with SAM in order to gain access to the Disaster Response Registry. [74...

  4. Fire Technology Abstracts, volume 4, issue 1, August, 1981

    NASA Astrophysics Data System (ADS)

    Holtschlag, L. J.; Kuvshinoff, B. W.; Jernigan, J. B.

    This bibliography contains over 400 citations with abstracts addressing various aspects of fire technology. Subjects cover the dynamics of fire, behavior and properties of materials, fire modeling and test burns, fire protection, fire safety, fire service organization, apparatus and equipment, fire prevention, suppression, planning, human behavior, medical problems, codes and standards, hazard identification, safe handling of materials, insurance, economics of loss and prevention, and more.

  5. Architecture for Variable Data Entry into a National Registry.

    PubMed

    Goossen, William

    2017-01-01

    The Dutch perinatal registry required a new architecture due to the large variability of the submitted data from midwives and hospitals. The purpose of this article is to describe the healthcare information architecture for the Dutch perinatal registry. requirements analysis, design, development and testing. The architecture is depicted for its components and preliminary test results. The data entry and storage work well, the Data Marts are under preparation.

  6. Cancer registries in four provinces in Turkey: a case study

    PubMed Central

    2012-01-01

    Background The burden of cancer affects all countries; while high-income countries have the capacity and resources to establish comprehensive cancer control programs, low and middle-income countries have limited resources to develop such programs. This paper examines factors associated with the development of cancer registries in four provinces in Turkey. It looks at the progress made by these registries, the challenges they faced, and the lessons learned. Other countries with similar resources can benefit from the lessons identified in this case study. Methods A mix of qualitative case study methods including key informant interviews, document review and questionnaires was used. Results This case study showed that surveillance systems that accurately report current cancer-related data are essential components of a country’s comprehensive cancer control program. At the initial stages, Turkey established one cancer registry with international support, which was used as a model for other registries. The Ministry of Health recognized the value of the registry data and its contribution to the country’s cancer control program and is supporting sustainability of these registries as a result. Conclusions This study demonstrates how Turkey was able to use resources from multiple sources to enhance its population based cancer registry system in four provinces. With renewed international interest in non-communicable diseases and cancer following the 2011 UN high-level meeting on NCDs, low- and middle- income countries can benefit from Turkey’s experience. Other countries can utilize lessons learned from Turkey as they address cancer burden and establish their own registries. PMID:23110989

  7. 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.

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

    PubMed

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

    2017-12-01

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

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

    PubMed

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

    2012-12-01

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

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

    PubMed

    Ahern, Verity

    2014-12-01

    The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16 years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10-15 years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology. © 2014 The Royal Australian and New Zealand College of Radiologists.

  11. Australia and New Zealand Islets and Pancreas Transplant Registry Annual Report 2017—Pancreas Waiting List, Recipients, and Donors

    PubMed Central

    Webster, Angela C; Hedley, James; Patekar, Abhijit; Robertson, Paul; Kelly, Patrick J

    2017-01-01

    Abstract This is a registry report from the Australia and New Zealand Islet and Pancreas Transplant Registry. We report data for all solid organ pancreas transplant activity from inception in 1984 to end of 2016. Data analysis was performed using Stata Software version 14 (StataCorp, College Station, Tex). From 1984 to 2016 a total of 756 solid organ pancreas transplants have been performed in Australia and New Zealand, in 738 individuals. In 2016, 55 people received a pancreas transplant. These transplants were performed in Auckland (4), Monash (22), and Westmead (29). In 2016, 50 transplants were simultaneous pancreas kidney, 4 were pancreas after kidney, and 1 was a pancreas transplant alone. PMID:29026874

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

    PubMed

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

    2016-01-01

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

  13. 16th IHIW: Global analysis of registry HLA haplotypes from 20 Million individuals: Report from the IHIW Registry Diversity Group

    PubMed Central

    Maiers, M; Gragert, L; Madbouly, A; Steiner, D; Marsh, S G E; Gourraud, P-A; Oudshoorn, M; Zanden, H; Schmidt, A H; Pingel, J; Hofmann, J; Müller, C; Eberhard, H-P

    2013-01-01

    This project has the goal to validate bioinformatics methods and tools for HLA haplotype frequency analysis specifically addressing unique issues of haematopoietic stem cell registry data sets. In addition to generating new methods and tools for the analysis of registry data sets, the intent is to produce a comprehensive analysis of HLA data from 20 million donors from the Bone Marrow Donors Worldwide (BMDW) database. This report summarizes the activity on this project as of the 16IHIW meeting in Liverpool. PMID:23280139

  14. Chronic disease management systems registries in rural health care.

    PubMed

    Skinner, Anne; Fraser-Maginn, Roslyn; Mueller, Keith J

    2006-05-01

    Health care quality is being addressed from a variety of policy perspectives. The 2001 Institute of Medicine report, Crossing the Quality Chasm, calls for sweeping action involving a five-part strategy for change in the U.S. health care system. This agenda for change includes use of evidence-based approaches to address common conditions, the majority of which are chronic. A Chronic Disease Management System (CDMS), or registry, is a tool that helps providers efficiently collect and analyze patient information to promote quality care for the rural population. CDMSs can provide a technological entry point for the impending use of Electronic Medical Records. A CDMS is a patient-centered electronic database tool that helps providers diagnose, treat, and manage chronic diseases. The purpose of this brief is to discuss the different types of CDMSs used by a sample of 14 state organizations and 19 local rural clinics in Maine, Nebraska, New Mexico, South Carolina, Washington, and Wisconsin. As part of a larger study examining the challenges and innovations in implementing disease management programs in rural areas, we conducted interviews with national, state, and local contacts. During interviews, respondents helped us understand the usefulness and functionalities of commonly used CDMSs in rural facilities. Our focus was on the use of CDMSs in the management of diabetes, a disease prevalent in rural populations. (1) CDMSs are readily available to rural clinics and are being implemented and maintained by clinic staff with minimal expenditures for technology. (2) Use of a standardized system in a collaborative helps provide data comparisons and share costs involved with technical assistance services across the group.

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

    PubMed

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

    2014-12-01

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

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

    PubMed

    Asadi, Farkhondeh; Paydar, Somayeh

    2018-04-01

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

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

    PubMed

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

    2017-09-01

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

  18. Abstraction in Mathematics and Mathematics Learning

    ERIC Educational Resources Information Center

    Mitchelmore, Michael; White, Paul

    2004-01-01

    It is claimed that, since mathematics is essentially a self-contained system, mathematical objects may best be described as "abstract-apart." On the other hand, fundamental mathematical ideas are closely related to the real world and their learning involves empirical concepts. These concepts may be called "abstract-general" because they embody…

  19. Dissertation Abstracts in Mathematics Education, 1983.

    ERIC Educational Resources Information Center

    Suydam, Marilyn N., Comp.

    The dissertation abstracts in this compilation all appeared in "Dissertation Abstracts International" in 1983. The 300 dissertations cited in the annual listing of research in the July 1984 issue of the "Journal for Research in Mathematics Education" are included, as well as 55 dissertations which were located but could not be…

  20. Third LDEF Post-Retrieval Symposium Abstracts

    NASA Technical Reports Server (NTRS)

    Levine, Arlene S. (Compiler)

    1993-01-01

    This volume is a compilation of abstracts submitted to the Third Long Duration Exposure Facility (LDEF) Post-Retrieval Symposium. The abstracts represent the data analysis of the 57 experiments flown on the LDEF. The experiments include materials, coatings, thermal systems, power and propulsion, science (cosmic ray, interstellar gas, heavy ions, micrometeoroid, etc.), electronics, optics, and life science.

  1. User-Extensible Graphics Using Abstract Structure,

    DTIC Science & Technology

    1987-08-01

    Flex 6 The Algol68 model of the graphical abstract structure 5 The creation of a PictureDefinition 6 The making of a picture from a PictureDefinition 7...data together with the operations that can be performed on that data. i 7! ś I _ § 4, The Alqol68 model of the graphical abstract structure Every

  2. Title I, Higher Education Act Program Abstracts.

    ERIC Educational Resources Information Center

    Miller, Lorna M., Ed.

    The 1979 edition of the Title I, Higher Education Act Program Abstracts is presented. Directed toward state Title I, HEA administrators, the program abstracts are made available in order to encourage nationwide program replication of those tested and evaluated programs that have been conducted with Title I support by institutions of higher…

  3. National Workplace Literacy Program. 1993 Abstracts.

    ERIC Educational Resources Information Center

    Office of Vocational and Adult Education (ED), Washington, DC. National Workplace Literacy Program.

    This publication presents the abstracts of the 57 National Workplace Literacy Program 1993 projects. Each abstract provides the following information: project title; award number; project director; awardee; address; telephone and fax numbers; funds by fiscal year (federal and nonfederal); award period; federal project officer; objectives;…

  4. Interactional Metadiscourse in Research Article Abstracts

    ERIC Educational Resources Information Center

    Gillaerts, Paul; Van de Velde, Freek

    2010-01-01

    This paper deals with interpersonality in research article abstracts analysed in terms of interactional metadiscourse. The evolution in the distribution of three prominent interactional markers comprised in Hyland's (2005a) model, viz. hedges, boosters and attitude markers, is investigated in three decades of abstract writing in the field of…

  5. Developing Creativity and Abstraction in Representing Data

    ERIC Educational Resources Information Center

    South, Andy

    2012-01-01

    Creating charts and graphs is all about visual abstraction: the process of representing aspects of data with imagery that can be interpreted by the reader. Children may need help making the link between the "real" and the image. This abstraction can be achieved using symbols, size, colour and position. Where the representation is close to what…

  6. Foundations of the Bandera Abstraction Tools

    NASA Technical Reports Server (NTRS)

    Hatcliff, John; Dwyer, Matthew B.; Pasareanu, Corina S.; Robby

    2003-01-01

    Current research is demonstrating that model-checking and other forms of automated finite-state verification can be effective for checking properties of software systems. Due to the exponential costs associated with model-checking, multiple forms of abstraction are often necessary to obtain system models that are tractable for automated checking. The Bandera Tool Set provides multiple forms of automated support for compiling concurrent Java software systems to models that can be supplied to several different model-checking tools. In this paper, we describe the foundations of Bandera's data abstraction mechanism which is used to reduce the cardinality (and the program's state-space) of data domains in software to be model-checked. From a technical standpoint, the form of data abstraction used in Bandera is simple, and it is based on classical presentations of abstract interpretation. We describe the mechanisms that Bandera provides for declaring abstractions, for attaching abstractions to programs, and for generating abstracted programs and properties. The contributions of this work are the design and implementation of various forms of tool support required for effective application of data abstraction to software components written in a programming language like Java which has a rich set of linguistic features.

  7. SEER Abstracting Tool (SEER*Abs)

    Cancer.gov

    With this customizable tool, registrars can collect and store data abstracted from medical records. Download the software and find technical support and reference manuals. SEER*Abs has features for creating records, managing abstracting work and data, accessing reference data, and integrating edits.

  8. Interpreting Abstract Interpretations in Membership Equational Logic

    NASA Technical Reports Server (NTRS)

    Fischer, Bernd; Rosu, Grigore

    2001-01-01

    We present a logical framework in which abstract interpretations can be naturally specified and then verified. Our approach is based on membership equational logic which extends equational logics by membership axioms, asserting that a term has a certain sort. We represent an abstract interpretation as a membership equational logic specification, usually as an overloaded order-sorted signature with membership axioms. It turns out that, for any term, its least sort over this specification corresponds to its most concrete abstract value. Maude implements membership equational logic and provides mechanisms to calculate the least sort of a term efficiently. We first show how Maude can be used to get prototyping of abstract interpretations "for free." Building on the meta-logic facilities of Maude, we further develop a tool that automatically checks and abstract interpretation against a set of user-defined properties. This can be used to select an appropriate abstract interpretation, to characterize the specified loss of information during abstraction, and to compare different abstractions with each other.

  9. Abstracts of BESRL Research Publications, FY 1969.

    ERIC Educational Resources Information Center

    Brown, Emma E.

    Publications abstracted include Technical Research Reports 1156 and 1157, Technical Research Notes 199 through 210, Research Studies 68-4 through 68-6 and 69-1 through 6910, and Research Memorandums 68-8 through 68-13. Included are descriptions of 19 Work Units covering activities reported in the 33 abstracted publications, a list of regular…

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

    PubMed

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

    2010-01-01

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

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

    PubMed

    Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

    2018-04-01

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

  12. National registry of patients with systemic lupus erythematosus of the Spanish Society of Rheumatology: objectives and methodology.

    PubMed

    Rúa-Figueroa, Iñigo; López-Longo, Francisco Javier; Calvo-Alén, Jaime; Galindo-Izquierdo, María; Loza, Estíbaliz; García de Yebenes, M Jesús; Pego-Reigosa, José M

    2014-01-01

    To describe the objectives, design and methods of the Spanish Society of Rheumatology systemic lupus erythematosus (SLE) registry (RELESSER). Multicenter, hospital-based registry, with retrospective collection of data from a large representative sample of adult patients with SLE (1997 ACR criteria) attending Spanish rheumatology services. The registry includes demographic data, frequent and infrequent (<1%) clinical manifestations, information about activity, damage, severity, comorbidity, treatments and mortality, collecting 359 variables per patient, with highly standardized definitions. We performed a preliminary descriptive analysis of the data. Forty-five centers were involved and 4,024 SLE patients (91% with ≥ 4 ACR criteria) have been included; 90% are women and 93% caucasians, with a median age at diagnosis of 33 years, median disease duration: 120 months, median follow-up duration: 104 months; 3,222 (81%) of the patients are in active follow-up and 591 (14%) were lost to follow-up. The median values of the SELENA-SLEDAI score, SLICC/ACR damage index and Katz severity index have been 2, 1 and 2, respectively. A total of 211 patients (6%) died. RELESSER represents the largest European SLE registry built to date, providing comprehensive and reliable information on SLE manifestations, disease status, comorbid conditions and treatments in daily clinical practice. RELESSER is constituted as a tool of great potential for multicenter clinical research in SLE. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  13. Ten years and 100,000 participants later: occupational and other factors influencing participation in US Gulf War health registries.

    PubMed

    Smith, Tyler C; Smith, Besa; Ryan, Margaret A K; Gray, Gregory C; Hooper, Tomoko I; Heller, Jack M; Dalager, Nancy A; Kang, Han K; Gackstetter, Gary D

    2002-08-01

    For more than a decade after the Gulf War, there has been concern that wartime exposures have resulted in significant morbidity among Gulf War veterans. After the end of the war, the Department of Veterans Affairs (VA) and the Department of Defense (DoD) initiated health registries to provide systematic clinical evaluations of Gulf War veterans who chose to participate. By September 1999, there were 32,876 participants in the DoD Comprehensive Clinical Evaluation Program and 70,385 participants in the VA Gulf War Registry Health Examination Program. We identified demographic and military service factors, as well as potential war-related exposures associated with subsequent registry participation after 10 years of observation. Veterans potentially exposed to oil well fire smoke, those near Khamisiyah, Reserve and National Guard, Army veterans, and veterans in the theater of operations during intense combat periods were most likely to elect to participate in a registry. These findings support the hypothesis that certain occupational factors and wartime exposures may influence subsequent health care-seeking behavior.

  14. 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

  15. The Burden and Impact of Vertigo: Findings from the REVERT Patient Registry

    PubMed Central

    Benecke, Heike; Agus, Sam; Kuessner, Daniel; Goodall, Gordon; Strupp, Michael

    2013-01-01

    Objective: Despite the high prevalence of vertigo globally and an acknowledged, but under-reported, effect on an individual’s wellbeing, few studies have evaluated the burden on healthcare systems and society. This study was aimed to quantitatively determine the impact of vertigo on healthcare resource use and work productivity. Methods: The economic burden of vertigo was assessed through a multi-country, non-interventional, observational registry of vertigo patients: the Registry to Evaluate the Burden of Disease in Vertigo. Patients included were those with a new diagnosis of Meniere’s disease, benign paroxysmal positional vertigo, other vertigo of peripheral vestibular origin, or peripheral vestibular vertigo of unknown origin. Results: A total of 4,294 patients at 618 centers in 13 countries were included during the registry. Of the 4,105 patients analyzed, only half were in employment. Among this working patient population, 69.8% had reduced their workload, 63.3% had lost working days, and 4.6% had changed and 5.7% had quit their jobs, due to vertigo symptoms. Use of healthcare services among patients was high. In the 3 months preceding Visit 1, patients used emergency services 0.4 ± 0.9 times, primary care consultations 1.6 ± 1.8 times, and specialist consultations 1.4 ± 2.0 times (all mean ± SD). A mean of 2.0 ± 5.4 days/patient was also spent in hospital due to vertigo. Conclusion: In addition to the negative impact on the patient from a humanistic perspective, vertigo has considerable impact on work productivity and healthcare resource use. PMID:24106487

  16. 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

  17. The University of Texas Houston Stroke Registry (UTHSR): implementation of enhanced data quality assurance procedures improves data quality

    PubMed Central

    2013-01-01

    Background Limited information has been published regarding standard quality assurance (QA) procedures for stroke registries. We share our experience regarding the establishment of enhanced QA procedures for the University of Texas Houston Stroke Registry (UTHSR) and evaluate whether these QA procedures have improved data quality in UTHSR. Methods All 5093 patient records that were abstracted and entered in UTHSR, between January 1, 2008 and December 31, 2011, were considered in this study. We conducted reliability and validity studies. For reliability and validity of data captured by abstractors, a random subset of 30 records was used for re-abstraction of select key variables by two abstractors. These 30 records were re-abstracted by a team of experts that included a vascular neurologist clinician as the “gold standard”. We assessed inter-rater reliability (IRR) between the two abstractors as well as validity of each abstractor with the “gold standard”. Depending on the scale of variables, IRR was assessed with Kappa or intra-class correlations (ICC) using a 2-way, random effects ANOVA. For assessment of validity of data in UTHSR we re-abstracted another set of 85 patient records for which all discrepant entries were adjudicated by a vascular neurology fellow clinician and added to the set of our “gold standard”. We assessed level of agreement between the registry data and the “gold standard” as well as sensitivity and specificity. We used logistic regression to compare error rates for different years to assess whether a significant improvement in data quality has been achieved during 2008–2011. Results The error rate dropped significantly, from 4.8% in 2008 to 2.2% in 2011 (P < 0.001). The two abstractors had an excellent IRR (Kappa or ICC ≥ 0.75) on almost all key variables checked. Agreement between data in UTHSR and the “gold standard” was excellent for almost all categorical and continuous variables. Conclusions Establishment of a

  18. RENAC: National Registry of Congenital Anomalies of Argentina.

    PubMed

    Groisman, Boris; Bidondo, María Paz; Barbero, Pablo; Gili, Juan A; Liascovich, Rosa

    2013-12-01

    The National Registry of Congenital Anomalies (Registro Nacional de Anomalías Congénitas, RENAC) is a hospital-based surveillance system for newborn infants with major morphological congenital anomalies (CAs). The objective of this study was to describe the characteristics and operation of the RENAC registry and the prevalence at birth of 56 specifc selected CAs, compared to other registries. The organization of the RENAC registry was initiated in public hospitals with 1000 or more births per year or which are the referral hospitals in a determined health region. Neonatologists are in charge of data collection, and a central coordination department is in charge of encoding, statistical analyses and regular reports. The RENAC registry uses an online forum for data submission and for guidance and interaction regarding the initial management of cases. Between November 1st, 2009 and June 30th, 2012, 98 hospitals were included in the registry, the annual coverage of these hospitals is 65% in the public sector and 35% of births in Argentina. In this period, 294 005 newborn infants were examined, and 5165 cases with major CAs were detected (1.76%; 95% CI: 1.71-1.80). The most frequent CAs were septal heart defects (prevalence per 10 000: 28.6), Down's syndrome (prevalence per 10 000: 19.2), cleft lip +/- palate (prevalence per 10 000: 12), and a set of neural tube defects (prevalence per 10 000: 11.9). The RENAC has reached a high coverage in the public sector and the differences in prevalence with other registries can be related to operational aspects or actual differences, depending on the case. The RENAC deals with the collection, analysis and dissemination of information about CAs in Argentina, and also contributes with local interventions.

  19. An Evaluation of References to Indexes and Abstracts in Ulrich's 17th Edition.

    ERIC Educational Resources Information Center

    Wyndham, Diana

    1980-01-01

    Ulrich's performance in listing references to indexes was tested by comparing its statement of where a journal is indexed with the list of the indexed journals in the indexing/abstracting services themselves. (Author)

  20. Inter-rater reliability of data elements from a prototype of the Paul Coverdell National Acute Stroke Registry

    PubMed Central

    Reeves, Mathew J; Mullard, Andrew J; Wehner, Susan

    2008-01-01

    Background The Paul Coverdell National Acute Stroke Registry (PCNASR) is a U.S. based national registry designed to monitor and improve the quality of acute stroke care delivered by hospitals. The registry monitors care through specific performance measures, the accuracy of which depends in part on the reliability of the individual data elements used to construct them. This study describes the inter-rater reliability of data elements collected in Michigan's state-based prototype of the PCNASR. Methods Over a 6-month period, 15 hospitals participating in the Michigan PCNASR prototype submitted data on 2566 acute stroke admissions. Trained hospital staff prospectively identified acute stroke admissions, abstracted chart information, and submitted data to the registry. At each hospital 8 randomly selected cases were re-abstracted by an experienced research nurse. Inter-rater reliability was estimated by the kappa statistic for nominal variables, and intraclass correlation coefficient (ICC) for ordinal and continuous variables. Factors that can negatively impact the kappa statistic (i.e., trait prevalence and rater bias) were also evaluated. Results A total of 104 charts were available for re-abstraction. Excellent reliability (kappa or ICC > 0.75) was observed for many registry variables including age, gender, black race, hemorrhagic stroke, discharge medications, and modified Rankin Score. Agreement was at least moderate (i.e., 0.75 > kappa ≥; 0.40) for ischemic stroke, TIA, white race, non-ambulance arrival, hospital transfer and direct admit. However, several variables had poor reliability (kappa < 0.40) including stroke onset time, stroke team consultation, time of initial brain imaging, and discharge destination. There were marked systematic differences between hospital abstractors and the audit abstractor (i.e., rater bias) for many of the data elements recorded in the emergency department. Conclusion The excellent reliability of many of the data elements

  1. Arthroplasty Implant Registries Over the Past Five Decades: Development, Current, and Future Impact.

    PubMed

    Malchau, Henrik; Garellick, Göran; Berry, Daniel; Harris, William H; Robertson, Otto; Kärrlholm, Johan; Lewallen, David; Bragdon, Charles R; Lidgren, Lars; Herberts, Peter

    2018-04-16

    Local, regional and national registries have played an important role the development of hip and knee arthroplasty and the treatment of patients with various maladies of these joints. Four arthroplasty registries stand out as leading forces behind the drive to popularize the use of registries and pursue the concept of evidence based medicine. The Mayo registry, started by Mark Coventry, is recognized as the oldest continuing registry for arthroplasty. The Harris Registry at Massachusetts General Hospital, along with the Mayo Registry, has greatly contributed to the advancement of arthroplasty surgery and have served an important role of identifying poorly performing implants and techniques in the United States. The Swedish Knee Arthroplasty Registry is the oldest national registry dedicated to joint arthroplasty and along with the Swedish Hip Arthroplasty Registry have established the infrastructure, analysis and reporting mechanisms and leadership that has enabled other countries to subsequently develop national registries around the world. As more countries have adopted the concept of national registries, a new area of research is possible by pooling the resources of large registries as is now occurring with the Nordic countries. Several international organizations have been formed to promote future collaboration and develop international standards. The process of globalization of registries is a result of continued efforts over the past 50 years in improving and disseminating the knowledge gained from the early registries. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  2. Pediatric Intestinal Rehabilitation and Transplantation Registry: Initial Report from a European Collaborative Registry.

    PubMed

    Totonelli, Giorgia; Tambucci, Roberto; Boscarelli, Alessandro; Hermans, Dominique; Dall'Oglio, Luigi; Diamanti, Antonella; d'Aische, Aloys du Bois; Pakarinen, Mikko; Reding, Raymond; Morini, Francesco; Bagolan, Pietro; Fusaro, Fabio

    2018-02-01

     Short bowel syndrome (SBS) is the main cause of intestinal failure (IF) in the pediatric population. To promote the standardization of care of these patients, the registry of Pediatric Intestinal Rehabilitation and Transplantation (PIRAT) has been established. The aim of this study is to describe patients with IF using PIRAT database.  Data from two tertiary care European referral Centers registered in PIRAT (https://www.studeon.eu/pirat) were analyzed (1994-2015). Neonatal SBS-related IF was defined as need for parenteral nutrition (PN) to sustain life and growth for more than 75 days, after extensive bowel resection during neonatal period. Data included patient demographics, disease at birth, residual small intestine, and intestinal autonomy (PN on/off).  In this study, 114 children with SBS-related IF were identified (male 60%). Median gestational age was 35.3 weeks (interquartile range [IQR]: 33.0-38.0); median birth weight was 2,440 g (IQR: 1,700-2,990). The main causes of SBS were intestinal atresia in 31 (27%), midgut volvulus in 29 (25%), necrotizing enterocolitis in 23 (20%), and gastroschisis in 12 (11%). Nine (7.9%) patients died on PN (six sepsis, two IF-associated liver disease, and one multiorgan failure). Median residual small bowel length was 46 cm (IQR: 13.0-92.5). Ileocecal valve was resected in 48 patients (42%). Intestinal autonomy was achieved in 68% patients.  We present the web-based registry PIRAT and the first results of patients with IF registered from two European Centers. PIRAT could give the opportunity to create a dedicated international network (IF-net) to standardize, improve, and spread the therapeutic paths for the rare and heterogeneous condition of SBS-related IF. Georg Thieme Verlag KG Stuttgart · New York.

  3. Abstract Spatial Reasoning as an Autistic Strength

    PubMed Central

    Stevenson, Jennifer L.; Gernsbacher, Morton Ann

    2013-01-01

    Autistic individuals typically excel on spatial tests that measure abstract reasoning, such as the Block Design subtest on intelligence test batteries and the Raven’s Progressive Matrices nonverbal test of intelligence. Such well-replicated findings suggest that abstract spatial processing is a relative and perhaps absolute strength of autistic individuals. However, previous studies have not systematically varied reasoning level – concrete vs. abstract – and test domain – spatial vs. numerical vs. verbal, which the current study did. Autistic participants (N = 72) and non-autistic participants (N = 72) completed a battery of 12 tests that varied by reasoning level (concrete vs. abstract) and domain (spatial vs. numerical vs. verbal). Autistic participants outperformed non-autistic participants on abstract spatial tests. Non-autistic participants did not outperform autistic participants on any of the three domains (spatial, numerical, and verbal) or at either of the two reasoning levels (concrete and abstract), suggesting similarity in abilities between autistic and non-autistic individuals, with abstract spatial reasoning as an autistic strength. PMID:23533615

  4. Abstraction and model evaluation in category learning.

    PubMed

    Vanpaemel, Wolf; Storms, Gert

    2010-05-01

    Thirty previously published data sets, from seminal category learning tasks, are reanalyzed using the varying abstraction model (VAM). Unlike a prototype-versus-exemplar analysis, which focuses on extreme levels of abstraction only, a VAM analysis also considers the possibility of partial abstraction. Whereas most data sets support no abstraction when only the extreme possibilities are considered, we show that evidence for abstraction can be provided using the broader view on abstraction provided by the VAM. The present results generalize earlier demonstrations of partial abstraction (Vanpaemel & Storms, 2008), in which only a small number of data sets was analyzed. Following the dominant modus operandi in category learning research, Vanpaemel and Storms evaluated the models on their best fit, a practice known to ignore the complexity of the models under consideration. In the present study, in contrast, model evaluation not only relies on the maximal likelihood, but also on the marginal likelihood, which is sensitive to model complexity. Finally, using a large recovery study, it is demonstrated that, across the 30 data sets, complexity differences between the models in the VAM family are small. This indicates that a (computationally challenging) complexity-sensitive model evaluation method is uncalled for, and that the use of a (computationally straightforward) complexity-insensitive model evaluation method is justified.

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

    Treesearch

    Jessica Call; Jennifer Hayes

    2007-01-01

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

  6. Hereditary colorectal cancer registries in Canada: report from the Colorectal Cancer Association of Canada consensus meeting; Montreal, Quebec; October 28, 2011

    PubMed Central

    Rothenmund, H.; Singh, H.; Candas, B.; Chodirker, B.N.; Serfas, K.; Aronson, M.; Holter, S.; Volenik, A.; Green, J.; Dicks, E.; Woods, M.O.; Gilchrist, D.; Gryfe, R.; Cohen, Z.; Foulkes, W.D.

    2013-01-01

    At a consensus meeting held in Montreal, October 28, 2011, a multidisciplinary group of Canadian experts in the fields of genetics, gastroenterology, surgery, oncology, pathology, and health care services participated in presentation and discussion sessions for the purpose of developing consensus statements pertaining to the development and maintenance of hereditary colorectal cancer registries in Canada. Five statements were approved by all participants. PMID:24155632

  7. Chronic myelogenous leukemia in eastern Pennsylvania: an assessment of registry reporting.

    PubMed

    Mertz, Kristen J; Buchanich, Jeanine M; Washington, Terri L; Irvin-Barnwell, Elizabeth A; Woytowitz, Donald V; Smith, Roy E

    2015-01-01

    Chronic myelogenous leukemia (CML) has been reportable to the Pennsylvania Cancer Registry (PCR) since the 1980s, but the completeness of reporting is unknown. This study assessed CML reporting in eastern Pennsylvania where a cluster of another myeloproliferative neoplasm was previously identified. Cases were identified from 2 sources: 1) PCR case reports for residents of Carbon, Luzerne, or Schuylkill County with International Classification of Diseases for Oncology, Third Edition (ICD-O-3) codes 9875 (CML, BCR-ABL+), 9863 (CML, NOS), and 9860 (myeloid leukemia) and date of diagnosis 2001-2009, and 2) review of billing records at hematology practices. Participants were interviewed and their medical records were reviewed by board-certified hematologists. PCR reports included 99 cases coded 9875 or 9863 and 9 cases coded 9860; 2 additional cases were identified by review of billing records. Of the 110 identified cases, 93 were mailed consent forms, 23 consented, and 12 medical records were reviewed. Hematologists confirmed 11 of 12 reviewed cases as CML cases; all 11 confirmed cases were BCR/ABL positive, but only 1 was coded as positive (code 9875). Very few unreported CML cases were identified, suggesting relatively complete reporting to the PCR. Cases reviewed were accurately diagnosed, but ICD-0-3 coding often did not reflect BCR-ABL-positive tests. Cancer registry abstracters should look for these test results and code accordingly.

  8. Construction of a US Fibromyalgia Registry Using the Fibromyalgia Research Survey Criteria

    PubMed Central

    McAllister, Samantha J.; Oh, Terry H.; Luedtke, Connie A.; Toussaint, Loren L.; Vincent, Ann

    2013-01-01

    Abstract Utilizing billing records, we identified patients seen at Mayo Clinic with a diagnosis or history of fibromyalgia who were then contacted for enrollment in a fibromyalgia research registry. Fibromyalgia was confirmed through medical record review. Eligible patients were mailed an invitation that included a demographic questionnaire and the Fibromyalgia Research Survey. The Fibromyalgia Research Survey yields a widespread pain score (scale range 0–19) and a symptom severity score (scale range 0–12). A total of 4,034 patients returned the completed survey; 92.8% were female, their mean age was 57.4 (±13.4), and 83.7% were from the Midwest region of the United States. The mean widespread pain score for all participants was 11.3 (±4.5) and the mean symptom severity score was 8.2 (±2.4), indicating moderate‐to‐severe fibromyalgia symptoms, which is not unusual for patients presenting to a tertiary care center. Using a systematic process, we describe the creation of a fibromyalgia registry for future research. PMID:24127929

  9. A UK medical devices regulator's perspective on registries.

    PubMed

    Wilkinson, John; Crosbie, Andy

    2016-04-01

    Registries are powerful tools to support manufacturers in the fulfilment of their obligations to perform post-market surveillance and post-market clinical follow-up of implantable medical devices. They are also a valuable resource for regulators in support of regulatory action as well as in providing information around the safety of new and innovative technologies. Registries can provide valuable information on the relative performance of both generic types and manufacturer's individual products and they complement other sources of information about device performance such as post-market clinical studies and adverse incident reporting. This paper describes the experience of the UK medical device regulator - the Medicines and Healthcare Products Regulatory Agency (MHRA) - of working with registries to monitor the safety and performance of medical devices. Based upon this experience, the authors identify a number of attributes for a registry which they consider to be key if the registry is to contribute effectively to the work of regulators on patient safety monitoring and medical device regulation.

  10. 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

  11. Demographics of US pediatric contact dermatitis registry providers.

    PubMed

    Goldenberg, Alina; Jacob, Sharon E

    2015-01-01

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

  12. Childhood Vesicoureteral Reflux Studies: Registries and Repositories Sources and Nosology

    PubMed Central

    Chesney, Russell W.; Patters, Andrea B.

    2012-01-01

    Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. PMID:23044377

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

    PubMed

    Chesney, Russell W; Patters, Andrea B

    2013-12-01

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

  14. Epidemiology of hypospadias in Europe: a registry-based study.

    PubMed

    Bergman, Jorieke E H; Loane, Maria; Vrijheid, Martine; Pierini, Anna; Nijman, Rien J M; Addor, Marie-Claude; Barisic, Ingeborg; Béres, Judit; Braz, Paula; Budd, Judith; Delaney, Virginia; Gatt, Miriam; Khoshnood, Babak; Klungsøyr, Kari; Martos, Carmen; Mullaney, Carmel; Nelen, Vera; Neville, Amanda J; O'Mahony, Mary; Queisser-Luft, Annette; Randrianaivo, Hanitra; Rissmann, Anke; Rounding, Catherine; Tucker, David; Wellesley, Diana; Zymak-Zakutnia, Natalya; Bakker, Marian K; de Walle, Hermien E K

    2015-12-01

    Hypospadias is a common congenital malformation. The prevalence of hypospadias has a large geographical variation, and recent studies have reported both increasing and decreasing temporal trends. It is unclear whether hypospadias prevalence is associated with maternal age. To analyze the prevalence and trends of total hypospadias, isolated hypospadias, hypospadias with multiple congenital anomalies, hypospadias with a known cause, and hypospadias severity subtypes in Europe over a 10-year period and to investigate whether maternal age is associated with hypospadias. We included all children with hypospadias born from 2001 to 2010 who were registered in 23 EUROCAT registries. Information on the total number of births and maternal age distribution for the registry population was also provided. We analyzed the total prevalence of hypospadias and relative risks by maternal age. From 2001 to 2010, 10,929 hypospadias cases were registered in 5,871,855 births, yielding a total prevalence of 18.61 per 10,000 births. Prevalence varied considerably between different registries, probably due to differences in ascertainment of hypospadias cases. No significant temporal trends were observed with the exceptions of an increasing trend for anterior and posterior hypospadias and a decreasing trend for unspecified hypospadias. After adjusting for registry effects, maternal age was not significantly associated with hypospadias. Total hypospadias prevalence was stable in 23 EUROCAT registries from 2001 to 2010 and was not significantly influenced by maternal age.

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

    PubMed

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

    2014-09-01

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

  16. Big Data in Organ Transplantation: Registries and Administrative Claims

    PubMed Central

    Massie, Allan B.; Kucirka, Lauren; Segev, Dorry L.

    2015-01-01

    The field of organ transplantation benefits from large, comprehensive, transplant-specific national datasets available to researchers. In addition to the widely-used OPTN-based registries (the UNOS and SRTR datasets) and USRDS datasets, there are other publicly available national datasets, not specific to transplantation, which have historically been underutilized in the field of transplantation. Of particular interest are the Nationwide Inpatient Sample (NIS) and State Inpatient Databases (SID), produced by the Agency for Healthcare Research and Quality (AHRQ). The United States Renal Data System (USRDS) database provides extensive data relevant to studies of kidney transplantation. Linkage of publicly available datasets to external data sources such as private claims or pharmacy data provides further resources for registry-based research. Although these resources can transcend some limitations of OPTN-based registry data, they come with their own limitations, which must be understood to avoid biased inference. This review discusses different registry-based data sources available in the United States, as well as the proper design and conduct of registry-based research. PMID:25040084

  17. The EMBRACE web service collection

    PubMed Central

    Pettifer, Steve; Ison, Jon; Kalaš, Matúš; Thorne, Dave; McDermott, Philip; Jonassen, Inge; Liaquat, Ali; Fernández, José M.; Rodriguez, Jose M.; Partners, INB-; Pisano, David G.; Blanchet, Christophe; Uludag, Mahmut; Rice, Peter; Bartaseviciute, Edita; Rapacki, Kristoffer; Hekkelman, Maarten; Sand, Olivier; Stockinger, Heinz; Clegg, Andrew B.; Bongcam-Rudloff, Erik; Salzemann, Jean; Breton, Vincent; Attwood, Teresa K.; Cameron, Graham; Vriend, Gert

    2010-01-01

    The EMBRACE (European Model for Bioinformatics Research and Community Education) web service collection is the culmination of a 5-year project that set out to investigate issues involved in developing and deploying web services for use in the life sciences. The project concluded that in order for web services to achieve widespread adoption, standards must be defined for the choice of web service technology, for semantically annotating both service function and the data exchanged, and a mechanism for discovering services must be provided. Building on this, the project developed: EDAM, an ontology for describing life science web services; BioXSD, a schema for exchanging data between services; and a centralized registry (http://www.embraceregistry.net) that collects together around 1000 services developed by the consortium partners. This article presents the current status of the collection and its associated recommendations and standards definitions. PMID:20462862

  18. ASTRONAUTICS INFORMATION. ABSTRACTS, VOL. V, NO. 3. Abstracts 5,201- 5,330

    SciTech Connect

    Hardgrove, B.J.; Warren, F.L. comps.

    1962-03-01

    Abstracts of astronautics information covering the period March 1962 are presented. The 129 abstracts cover the subject of spaceflight and applicable data and techniques. Author, subject, and source indexes are included. (M.C.G.)

  19. ASTRONAUTICS INFORMATION. Abstracts Vol. III, No. 1. Abstracts 3,082- 3,184

    SciTech Connect

    None

    1961-01-01

    Abstracts are presented on astronautics. The abstracts are generally restricted to spaceflight and to applicable techniques and data. The publication covers the period of January 1961. 102 references. (J.R.D.)

  20. Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

    PubMed

    Morales-Asencio, Jose M; Kaknani-Uttumchandani, Shakira; Cuevas-Fernández-Gallego, Magdalena; Palacios-Gómez, Leopoldo; Gutiérrez-Sequera, José L; Silvano-Arranz, Agustina; Batres-Sicilia, Juan Pedro; Delgado-Romero, Ascensión; Cejudo-Lopez, Ángela; Trabado-Herrera, Manuel; García-Lara, Esteban L; Martin-Santos, Francisco J; Morilla-Herrera, Juan C

    2015-10-01

    Complex chronic diseases are a challenge for the current configuration of health services. Case management is a service frequently provided for people with chronic conditions, and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers and services used. The study was divided into three phases, covering the detection of information needs, the design and its implementation in the health care system, using literature review and expert consensus methods to select variables that would be included in the registry. A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. A web-based registry with modular and layered architecture was designed. The framework follows a pattern based on the model-view-controller approach. In its first 6 months after the implementation, 102 case managers have introduced an average number of 6.49 patients each one. The registry permits a complete and in-depth analysis of the characteristics of the patients who receive case management, the interventions delivered and some major outcomes as mortality, readmissions or adverse events. © 2015 John Wiley & Sons, Ltd.