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Next-generation registries: fusion of data for care, and research.

Authors
  • Mandl, Kenneth D
  • Edge, Stephen
  • Malone, Chad
  • Marsolo, Keith
  • Natter, Marc D
Type
Published Article
Journal
AMIA Joint Summits on Translational Science proceedings AMIA Summit on Translational Science
Publication Date
Jan 01, 2013
Volume
2013
Pages
164–167
Identifiers
PMID: 24303257
Source
Medline
License
Unknown

Abstract

Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

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