About the Handbook

"Registries for Evaluating Patient Outcomes: A User's Guide" published by the Agency for Healthcare Research and Quality (AHRQ) is a landmark federal publication providing key information on developing, operating and evaluating registries. The handbook provides tools intended to help evaluate the quality of a registry.

Outcome led the development of the handbook. Outcome's Drs. Richard Gliklich and Nancy Dreyer served as the project's principal investigators and senior editors. The work was performed under contract to Outcome through its role as an AHRQ DEcIDE Research Center, a component of AHRQ's Effective Health Care initiative. Please refer to the resources below for more information and for opportunities to hear the senior editors, authors, and contributors speak on the handbook.

Read the press release.

Request a Handbook

If you would like to receive a copy of the AHRQ handbook for you or your team, email us your request at grp@outcome.com. The handbook is also available as a pdf on the AHRQ's website www.ahrq.gov.

GRP Newsletter

Learn best practices of designing, implementing, and managing patient registries with our focused newsletter. Email us at grp@outcome.com to join our distribution list.

Outcome DEcIDE Research Center

Outcome is an AHRQ DEcIDE (Developing Evidence to Inform Decisions about Effectiveness) Research Center, one of 13 research centers selected to conduct accelerated practiced studies about the outcomes, comparative clinical effectiveness, safety, and appropriateness of healthcare items and services, a component of AHRQ's Effective Health Care initiative. Learn more.

Conferences and Presentations

Visit the Outcome booth at the following conferences to learn more about the AHRQ handbook:

ISPOR European Congress                                                                                                                              November 8-11, 2008 - Athens, Greece

Podcasts

Dr. Nancy Dreyer Speaks to PharmaVoice on the Importance of Registries and the AHRQ Handbook

Publications

"Designing and Assessing Registries to Evaluate the Safety of Medical Products"                                   Nancy Dreyer, MPH, PhD, Richard Gliklich, MD and Michelle Bertagna, The Monitor, August 2007 

The Emerging Role of the Patient Registry
Richard Gliklich, MD and Michelle Bertagna, GCPj, December 2006

Registering Results in the Real World
Richard Gliklich, MD, GCPj, August 2006

Post-Approval Research: Safety Net or Power Tool?
Nancy Dreyer, MPH, PhD, BioExecutive International, February 2006

"This new reference will be a tremendous resource to researchers, patient groups, health insurers, pharmaceutical companies and others who are eager to investigate which treatments work best...databases that depict outcomes in patient populations over time carry great potential for advancing the quality, safety and effectiveness of health care."

AHRQ Director, Carolyn M. Clancy, MD.

"Patient registries are a powerful tool to evaluate the safety, effectiveness, and quality of healthcare products and services. They are becoming increasingly important for clinical, scientific and policy purposes in an era where the focus of patients, clinicians, regulators and payers have turned to these critical real-world outcomes. The User's Guide is a tremendous achievement in providing a how-to handbook for patient registries and for defining key attributes of good practice for all stakeholders. We thank all of those who have contributed and AHRQ and CMS for supporting it."

Richard Gliklich, MD, president and CEO of Outcome
Join Our List

This page will continually be updated with the latest information on the handbook and patient registries. If you would like to be notified with any updates, please email us at grp@outcome.com to be added to our distribution list.

2009 Post-Approval Summit