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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

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.
  • 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.
idr group history
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
quick points from 2012 paper
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
next survey design process
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?
idr group future
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!