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.

Patient Registry Analysis & Data Management Working Group
Goal: to establish good research practices on the analysis of patient registry data.
Recent Activities and Accomplishments

Future Activities

 

An Annotated Patient Registry Bibliography

  1. Background articles on patient registries
  2. Peer-reviewed journal articles on registries and use of registry data

Development of a Patient Registry Directory

  1. Review clinical trial directories
  2. 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).]

Background continued…

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