ISPOR PATIENT REGISTRY SPECIAL INTEREST GROUP (PR)
Goal: to develop good research practices on characterization, classification, strategy, design, analysis, and application of patient registries and the data they generate in health care decisions.
Working Groups
Patient Registry Classification, Strategy & Design Goal: to establish consensus on the definition and classification of patient registries through the ISPOR Taxonomy of Patient Registries: Classification, Characteristics & Terms and to establish good research practices related to choices of registry strategy and consequent design.
Peer-reviewed journal articles on registries and use of registry data
Development of a Patient Registry Directory
Review clinical trial directories
Research & compile entries for directory
Background on Patient Registries:
Patient registries are prospective, observational cohort studies of patients with or at risk for a particular disease and/or receiving a particular treatment/intervention. They can be used for understanding natural history, assessing or monitoring real-world safety and effectiveness, assessing quality of care and provider performance, and assessing cost-effectiveness. [See Using Real World Data for Coverage and Payment Decisions: The ISPOR Real World Data Task Force Report at: RWTFManuscript.pdf or Garrison LP, Jr., Neumann PJ, Erickson P, et al. Using real world data for coverage and payment decisions: the ISPOR real world data task force report. Value in Health 2007; 10 (Sept/Oct 2007).]
