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IDR affinity group

IDR affinity group. IKFC update April 6, 2012. Motivations/principles . A forum and community of interest for building, enhancing and using Integrated Data Repositories (IDRs) for Biomedical Research.

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IDR affinity group

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  1. IDR affinity group IKFC update April 6, 2012

  2. Motivations/principles • A forum and community of interest for building, enhancing and using Integrated Data Repositories (IDRs) for Biomedical Research. • Defining “Integrated Data Repository” as a large-scale data resource making available data from the full array of systems in a biomedical enterprise, including clinical systems, life sciences (genomics / proteomics), research, billing, registries, clinical trial systems, and more – for secondary use. • Focused on practice, problems and progress in advancing range of research uses cases for IDR’s, including but not limited to hypothesis testing, cohort development, genome / phenome matching, genome-wide association studies (GWAS), development of quality measures, and general population based studies.

  3. IDR group history • Active history 2006 to-date • Developed and distributed 3 surveys for IDR activity at CTSA’s (2007/2008/2010) • Monthly/bi-monthly discussion/dissemination (formerly archived on wiki) ~ 40-50 members • Affiliated with DIAG/*omics and CRE groups • Regular f2f at CTSA/AMIA • Recent JAMIA publication • Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey, Mackenzie, S, Wyatt, M, Schuff, R, Tenenbaum, J, Anderson, N, JAMIA March 21, 2012

  4. Quick points from 2012 paper • 35 organizations (28 CTSAs) (2010) • Regular movement away from “home-grown” solutions to more commonly used systems • Increase in “self-serve” for both id and deid data • Small but increasing genomic data integration • Growing coordination of governance-based access processes • Average number of technical FTE’s supporting has decreased

  5. Next survey design process • Some to tee off… • What sustainable approaches (data access, economic, governance) are evolving, and how are they being tested? • What are standard metrics of an IDR? • How are these resources being “marketed” or included into education/translational resource environments? • What are the evolving models of larger data sharing?

  6. IDR group future • Unique environment in which to highlight local and national efforts • Evolving into an unique opportunity to share pragmatic approaches, technologies and models • 2012 survey (in the works) will seek to hit all 60 CTSA sites • Need new facilitators/coordinators for both survey and support of group – Nominate yourself!

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