Patient registries are observational studies that focus on understanding how the treatments, tests, and services that are used in routine clinical care and by specialists affect patient health outcomes. A registry that is appropriately designed, conducted, and analyzed will provide unique scientific information about the effectiveness, safety, and quality of the health-care service or intervention that is being studied. In recent years, the use of registries as a method for generating new scientific evidence has grown considerably. This trend is likely to continue in the future, particularly as manufacturers, regulators, and other decisionmakers seek objective information to augment what is known from clinical trials and other research studies about the harms and benefits of tests and therapies.
In response to these advancements, Registries for Evaluating Patient Outcomes: A User’s Guide was updated with new information from researchers, professionals, and recent publications, as well as more in-depth discussions of some topics covered in the original Guide. New sections were added on emerging challenges and controversies in registry planning, design, ethics, management, analysis, and evaluation that were informed by a series of expert meetings and working papers.
This Webcast reviews the updated sections and new chapters of this 2nd edition and and includes a discussion of potential topics for future editions. The 2nd edition can be viewed and downloaded at: http://www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=531.