title: Next-generation registries: fusion of data for care, and research.
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.
authors.affiliation: Harvard Medical School, Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Kenneth D
authors.initials: KD
authors.lastname: Mandl
authors.forename: Stephen
authors.initials: S
authors.lastname: Edge
authors.forename: Chad
authors.initials: C
authors.lastname: Malone
authors.forename: Keith
authors.initials: K
authors.lastname: Marsolo
authors.forename: Marc D
authors.initials: MD
authors.lastname: Natter