Background / Overview
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…

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

Activities:
2009

12th Annual European Congress in Paris, France:
The Role of Patient Registries In Evidence Development: Similarities And Differences Between Europe and North America
    » Workshop Description AND Workshop Presentation

14th International Meeting in Orlando, Florida:
Design, Development & Implementation Issues in the Patient Registry Taxonomy
    » Workshop Description AND Workshop Presentation

14th International Meeting in Orlando, Florida:
Analysis of Effectiveness and Cost-Effectiveness in Patient Registries
    » Workshop Description AND Workshop Presentation

11th European Congress in Athens, Greece
Use of Real World Data: Challenges in the Analysis of Patient Registry Data
    » Workshop Description AND Workshop Presentation

11th European Congress in Athens, Greece:
Patient Registry Design, Operations, Data & Taxonomy Forum

13th International Meeting in Toronto, Canada:
Recommendations for the Use of Patient Registry Data as a Complement for Randomized Clinical Trial
    » Workshop Description AND Workshop Presentation