A patient registry is a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care. The data may originate from multiple sources, including hospitals, pharmacy systems, physician practices, and insurance companies. Some registries include patients who have the same disease. Others are comprised of patients who have undergone a common surgical procedure or received a newly approved medication.

An analysis of patient registry data may offer insights that can improve health care and public health. For example, doctors may use a registry database to monitor disease patterns or identify unexpected adverse events in specific populations. Physician groups may analyze treatments to identify opportunities for quality improvement. Health insurers may review treatment trends before making coverage decisions. Researchers from academia, industry, and government may use registries to monitor the long-term comparative benefits, safety, and harms of medications or medical devices.

"This Registries Guide is a milestone in our growing efforts to draw from medical practice and learn which treatments really work best," said HHS Secretary Michael O. Leavitt. "If we can learn more systematically from the experience of millions of patients and clinicians in day-to-day practice, then we can discover more quickly which treatments are truly most effective, and for whom."

The new 219-page document, Registries for Evaluating Patient Outcomes: A User's Guide, is the first government-supported handbook for establishing, managing, and analyzing patient registries. Development of the handbook was co-funded by AHRQ and HHS' Centers for Medicare & Medicaid Services (CMS). Thirty-nine contributors from industry, academia, and government collaborated to create the handbook.

The patient registry guide is a product of the DEcIDE (Developing Evidence to Inform Decisions about Effectiveness) network, an arm of AHRQ's Effective Health Care (EHC) Program. Development and editing of the document was led by Outcome Sciences of Cambridge, Mass., a member of the DEcIDE network. The project's principal investigators were Richard Gliklich, M.D., and Nancy Dreyer, Ph.D., of Outcome Sciences.

The guide is downloadable from the EHC Web site, http://www.effectivehealthcare.ahrq.gov, and soon will be available in two printed forms—as the full-length document and as a 13-page summary that includes the best practices checklist. Copies may be ordered from the AHRQ Publications Clearinghouse by sending an E-mail to This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or calling 1-800-358-9295.

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