Registries for Evaluating Patient Outcomes: A User's Guide: 3rd Edition

Overview Feb 21, 2012


The AHRQ publication, "Registries for Evaluating Patient Outcomes: A User's Guide" 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 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.

  • 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.

An addendum consisting of an eBook, "21st Century Patient Registries," and five white papers was published in 2018. A second addendum, "Tools and Technologies for Registry Interoperability," is now available.

This new project is one of four secondary goals of a larger project, Developing a Registry of Patient Registries. In that project the primary goal is to engage stakeholders in the design and development of a searchable database of existing patient registries in the United States with a number of important features that will enable searching, sharing and patient recruiting. Learn more about this project and its other secondary goals designed to support the efficient use of high-quality registries for clinical research.

Project Timeline

Registries for Evaluating Patient Outcomes: A User's Guide: 3rd Edition

Feb 21, 2012
Topic Initiated
Feb 21, 2012
Apr 30, 2014
Page last reviewed December 2019
Page originally created November 2017

Internet Citation: Overview: Registries for Evaluating Patient Outcomes: A User's Guide: 3rd Edition. Content last reviewed December 2019. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.

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