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Effective Health Care Program

Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples

The Agency for Healthcare Research and Quality (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 2014.1

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, to be published in 2019.  This new edition will update existing chapters and include new content focusing on emerging issues.  As part of creating the fourth edition, the editors are seeking new case examples to provide timely, practical examples of the types of challenges facing registry developers and strategies that may be used to overcome these challenges.

Case examples should describe an existing patient registry or a registry currently under development.  While case examples on any topic of relevance to patient registries may be submitted, the editors are particularly interested in submissions that focus on the following topics:

  • Patient engagement in registry design and operation
  • Registry governance
  • Use of registries for new purposes, including:
    • Support of learning health systems
    • Integration into national health research infrastructure projects
    • Support of value-based care programs
    • Generation of real-world evidence (RWE) for regulatory purposes
  • Use of standardized outcome measures and/or common data elements
  • Incorporation of patient-reported outcomes (PROs) into registries
  • Novel registry designs, such direct-to-patient designs and designs that nest studies within a registry infrastructure
  • Registries that routinely link primary data collection with existing data such as electronic health records and/or health insurance claims.

The project team will work with authors of selected submissions to develop complete case examples following the format in the third edition.

For more information or to submit a case example, please contact Michelle Leavy at michelle@om1.comThe deadline for submitting case examples is July 13, 2018.


[1] See https://effectivehealthcare.ahrq.gov/topics/registry-of-patient-registries/advancing-registry-methodology-and-transparency for more information.