AHRQ outlines plans for master patient registry

A master patient registry could be made available to researchers if an Agency for Healthcare Research and Quality (AHRQ) request to create such a database is approved by the Office of Management and Budget.

“By creating a central point of collection for information about all patient registries in the United States, the registry of patient registries helps to further the AHRQ’s goals by making information regarding quality, appropriateness and effectiveness of health services (and patient registries in particular) more readily available,” read an AHRQ notice published in the Federal Register.

While many patient registries are currently collected by the FDA and stored at clinicaltrials.gov, the clinical trial database does not capture all of the information contained within patient registries. A master patient registry would provide a searchable database and facilitate the use of common data fields.   

The AHRQ would create the “registry of patient registries” using American Recovery and Reinvestment Act funds and estimates the project would cost a total of approximately $3 million.

Originally published Feb. 23, the Federal Register notice was republished July 11 to allow an additional 30 days for public comment. The complete notice is available here.