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. A series of white papers and two eBooks were published in 2018 and 2019, with the goal of providing timely information to support efficient registry development and use.
The white papers and eBooks are listed below:
- Managing Missing Data in Patient Registries
- Multinational Registries: Challenges and Opportunities
- Patient- or Participant-Generated Registries
- Accountable Care Organizations & Registries