The AHRQ publication "Registries for Evaluating Patient Outcomes: A User's Guide" (PDF, 1.2 MB) was published in 2007 by AHRQ as a reference handbook with practical information on the design, operation, and analysis of patient registries. In 2010, the User's Guide was updated with a focus on collecting information to assess patient outcomes.
This third edition (PDF, 2.1 MB) expands the User's Guide to address 11 new topics in registry methodology and update the existing chapters to cover new legislation and other changes in registry science. 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. Addendums were added in 2018 and 2019 to address contemporary issues in patient registries.
- Volume 1 includes sections on creating registries, legal and ethical considerations for registries, and operating registries.
- Volume 2 includes sections on technical, legal, and analytical considerations for combining registry data with other data sources, and special applications in patient registries.
- Addendum: 21st Century Patient Registries (PDF, 1.4 MB)
- Addendum: Tools and Technologies for Registry Interoperability (PDF, 1.2 MB)
- Addendum: Patient Registries and Biorepositories (PDF, 352.1 KB)
- Addendum: Managing Missing Data in Patient Registries (PDF, 293.1 KB)
- Addendum: Multinational Registries: Challenges and Opportunities (PDF, 413.1 KB)
- Addendum: Patient- or Participant-Generated Registries (PDF, 340 KB)
- Addendum: Accountable Care Organizations & Registries (PDF, 372.1 KB)