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.

 

GRACE Principles: Good ReseArch for Comparative Effectiveness

The GRACE Initiative is being spearheaded by Outcome with seed funding from the National Pharmaceutical Council (NPC). The GRACE principles address good practice for the design, conduct, analysis, and reporting of observational studies of comparative effectiveness. The principles are intended to meet the needs of both those who conduct such studies and those who need to evaluate the rigor of such studies to inform decision-making regarding therapeutic alternatives. Learn more.

Conferences and Presentations

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

CBI 6th Annual Summit on Post-Marketing Studies
February 25-26, 2010, London, UK

DIA EuroMeeting
March 7-10, 2010, Monaco

ISPE Mid-Year Symposium
April 10-12, 2010, Raleigh, NC


Podcasts

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

 

Publications

Registries for Robust Evidence
Nancy Dreyer, MPH, PhD, JAMA, August 2009

When Clinical Trials Aren't Enough
Richard Gliklich, MD, Applied Clinical Trials, March 2008

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

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.