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21st Century Patient Registries

Registries for Evaluating Patient Outcomes: A User’s Guide: 3rd Edition, Addendum

Editor: Richard E Gliklich, MD; Editor: Nancy A Dreyer, PhD, MPH, FISPE; Editor: Michelle B Leavy, MPH; Editor: Jennifer B Christian, PharmD, MPH, PhD, FISPE.

Editor Information
Rockville (MD): Agency for Healthcare Research and Quality (US); .
Report No.: 17(18)-EHC013-EF


This Addendum to the Third Edition of the Registries for Evaluating Patient Outcomes: A User’s Guide was performed under a contract from the Agency for Healthcare Research and Quality (AHRQ) with the purpose of presenting new, emerging themes related to designing and conducting registries. First published in 2007, the User’s Guide, with translations available in Chinese and Korean, serves as a reference for planning, developing, maintaining, and evaluating registries developed to collect data about patient outcomes. The second (2010) and third (2014) editions incorporated updates to existing topics and included new chapters on methodological and technological advances in registry science.

We are pleased to present 5 new chapters that address emerging topics in registries, including increasing the focus on patients in registries including engaging with patients throughout the design and conduct of registries, methodological considerations for using digital health technologies, designing patient-centric studies, and building registry networks.


Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services1 Contract No. 290-2014-00004-C. Prepared by: L&M Policy Research, LLC, with partners OM1 and IQVIA, Washington, DC

Suggested citation:

Gliklich RE, Dreyer NA, Leavy MB, Christian JB (eds). 21st Century Patient Registries. EBook addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, 3rd Edition. (Prepared by L&M Policy Research, LLC under Contract No. 290-2014-00004-C.) AHRQ Publication No. 17(18)-EHC013-EF. Rockville, MD: Agency for Healthcare Research and Quality; March 2018.

The Effective Health Care Program of the Agency for Healthcare Research and Quality (AHRQ) conducts and supports research focused on the outcomes, effectiveness, comparative clinical effectiveness, and appropriateness of pharmaceuticals, devices, and health care services. More information on the Effective Health Care Program can be found at

This report is based on research conducted by the L&M Policy Research, LLC, and partners OM1 and IQVIA, under contract to the Agency for Healthcare Research and Quality, Rockville, MD (Contract No. 290-2014-00004-C). The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ. Therefore, no statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. All statements in this report, including its findings and conclusions, are solely those of the authors and do not represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its board of Governors, or Methodology Committee.

None of the authors have any affiliations or financial involvement that conflicts with the material presented in this report.

This report may be used and reprinted without permission except those copyrighted materials that are clearly noted in the report. Further reproduction of those copyrighted materials is prohibited without the express permission of copyright holders.


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Bookshelf ID: NBK493818PMID: 29708678


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