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OUTCOME-Led Handbook for Patient Registry Development Published By Agency for Healthcare Research and Quality

Posted on: Wednesday, 16 May 2007, 09:00 CDT

Outcome Sciences, Inc. (OUTCOME), leading provider of patient registries, studies and technologies, today announced that the Agency for Healthcare Research and Quality (AHRQ) has published the handbook, "Registries for Evaluating Patient Outcomes: A User's Guide". This landmark federal publication provides registry developers key information on how to create and operate patient registries and the public and the government with tools by which to evaluate the quality of a registry and how registry data can be used to conduct valid scientific research.

"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," said AHRQ Director Carolyn M. Clancy, MD. "Databases that depict outcomes in patient populations over time carry great potential for advancing the quality, safety and effectiveness of health care."

OUTCOME was selected by AHRQ in 2005 to lead the effort to create the patient registries handbook. Outcome's Drs. Richard Gliklich and Nancy Dreyer served as the handbook's senior editors as well as authors. The final product was developed in collaboration with 39 authors, and 35 reviewers and includes 28 case studies which illustrate real-life challenges in the design and conduct of registries. Handbook contributors came from industry, academia and government, with representation from various agencies in the U.S. as well as the National Institute for Health and Clinical Excellence in the U.K. 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.

"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" said Richard Gliklich, MD, president and CEO of OUTCOME. "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."

The handbook is organized into three sections, creating, operating and evaluating registries, which lay out the basic information on key areas of registry development and operations, and highlight the spectrum of practices in each of these areas, including their potential strengths and weaknesses. The final chapter lays out the basic elements of good registry practice and potential enhancement that can be used to strengthen the rigor of registries.

The handbook will be available in machine-readable form on AHRQ's website (www.effectivehealthcare.ahrq.gov) and will also be available in print. Upcoming presentations on the handbook will be posted on the Outcome website (www.outcome.com).

About OUTCOME

OUTCOME is recognized for setting the standard in evaluating real-world outcomes through patient registries, post-approval studies and integrated technologies. OUTCOME provides services and technologies focused on evaluating the safety, effectiveness, and quality of healthcare products and services. OUTCOME has designed, developed and managed an industry-leading number of patient registries including many of the largest and most well-recognized programs for disease outcomes and safety/risk management. Outcome is also an AHRQ DEcIDE Research Center. For more information, please visit www.outcome.com.

Source: Business Wire

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