Working Groups

	Patient Registry Classification, Strategy & Design Goal: to establish consensus on the definition and classification of patient registries within the overall rubric of “evidence-based medicine” and to establish good research practices related to choices of registry strategy and consequent design.
	Patient Registry Design & Operations Goal: to establish good practices on how to design, implement and operate a patient registry to meet the sponsor’s desired goals regardless of geographic location.
	Communicating Patient Registry Information for Health Care Decision-making Working Group Goal: to establish good research practices on the use of registry evidence in disease management and health care decision-making.
	13 Annual International Meeting Presentation Patient Registry Forum: Registry Design, Operations, Data & Taxonomy Forum presentation Forum program

Activities and Accomplishments 2004 - 2006

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…