The AHRQ publication, “Registries for Evaluating Patient Outcomes: A User’s Guide” provides practical information on the design, operation, and analysis of patient registries. It also includes real-world contemporary case examples to illustrate key principles of registry design, operation, and evaluation and to demonstrate different strategies and perspectives to address common challenges. The third edition was published in 2014. Learn more and access the third edition.
To remain relevant, the User’s Guide is updated periodically to address emerging issues in registry science and methodology. Work is now underway on the fourth edition. This new edition will update existing chapters and include new chapters focusing on emerging issues. As part of creating the fourth edition, a series of white papers and an eBook are being developed and published as they are completed, with the goal of providing timely information to support efficient registry development and use.
Completed white papers and the eBook are listed below:
- Managing Missing Data in Patient Registries
- Multi-national Registries: Challenges and Opportunities
- Patient- or Participant-Generated Registries
- Accountable Care Organizations & Registries