The Agency for Healthcare Research and Quality wants to develop a searchable Registry of Patient Registries, which are databases that track the experience of individuals with diseases and conditions, to encourage collaboration and information sharing.
The registry will catalog patient registries in a model similar to ClinicalTrials.gov, which lists trials of new therapies for research but does not require listing of patient long-term observational studies. By aligning with ClinicalTrials.gov, the new registry will reduce duplication and foster transparency.
Patient registries may be designed for various purposes, such as to observe the natural history of disease, examine comparative effectiveness or fulfill post-approval drug approval commitments, according to AHRQ in a Feb. 22 announcement in the preview section of the Federal Register. The public can comment on the proposal for 60 days.
By creating a central point of collection for data about all patient registries in the U.S., the registry of registries will make information about quality, appropriateness and effectiveness of health services readily available.
“Patient registry research has become more prevalent and, based on stakeholder feedback, is not adequately served by ClinicalTrials.gov at present,” said Dr. Carolyn Clancy, AHRQ director, in the notice.
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In 2010, ClinicalTrials.gov entered 3,800 newly registered records designated as observational studies. Only a subset of that number would qualify as patient registries that would likely be entered into the registry of registries, AHQR said.
The Web-based registry will also encourage the use of common data fields and definitions in similar health conditions so they can more easily be compared.
The super registry will also offer a search tool to locate existing data that researchers will be able to request for use in new studies. AHRQ hopes that capability will serve to recruit researchers and patients interested in participating in patient registries.
