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," will be published in late 2019.
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.