Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey

Clinical integrated data repositories (IDRs) are poised to become a foundational element of biomedical and translational research by providing the coordinated data sources necessary to conduct retrospective analytic research and to identify and recruit prospective research subjects. The Clinical and...

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Bibliographic Details
Published in:Journal of the American Medical Informatics Association : JAMIA 2012-06, Vol.19 (e1), p.e119-e124
Main Authors: MacKenzie, Sandra L, Wyatt, Matt C, Schuff, Robert, Tenenbaum, Jessica D, Anderson, Nick
Format: Article
Language:English
Subjects:
Data Collection
Medical Informatics
Medical Record Linkage
Medical Records Systems, Computerized - organization & administration
Medical Records Systems, Computerized - trends
Research and Applications
Translational Medical Research
United States
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Summary:Clinical integrated data repositories (IDRs) are poised to become a foundational element of biomedical and translational research by providing the coordinated data sources necessary to conduct retrospective analytic research and to identify and recruit prospective research subjects. The Clinical and Translational Science Award (CTSA) consortium's Informatics IDR Group conducted a survey of 2010 consortium members to evaluate recent trends in IDR implementation and use to support research between 2008 and 2010. A web-based survey based in part on a prior 2008 survey was developed and deployed to 46 national CTSA centers. A total of 35 separate organizations completed the survey (74%), representing 28 CTSAs and the National Institutes of Health Clinical Center. Survey results suggest that individual organizations are progressing in their approaches to the development, management, and use of IDRs as a means to support a broad array of research. We describe the major trends and emerging practices below.
ISSN:1067-5027
1527-974X
DOI:10.1136/amiajnl-2011-000508