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. 2012 Jun;19(e1):e119-24.
doi: 10.1136/amiajnl-2011-000508. Epub 2012 Mar 21.

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

Sandra L MacKenzie  1 , Matt C Wyatt, Robert Schuff, Jessica D Tenenbaum, Nick Anderson
Affiliations

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

Sandra L MacKenzie et al. J Am Med Inform Assoc. 2012 Jun.

Abstract

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.

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Conflict of interest statement

Competing interests: None.

Figures

Figure 1
Figure 1
Does your organization have an integrated data repository (IDR)?
Figure 2
Figure 2
Percentage of integrated data repositories (IDRs) that incorporate these data areas. Extl, external; LIMS, laboratory information management system; Soc sec, social security.
Figure 3
Figure 3
Obstacles, challenges, and enhancements to integrated data repository (IDR) development. BI, business intelligence; HIPAA, Health Insurance Portability and Accountability Act.
See this image and copyright information in PMC

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