AHRQ Looking to Establish Registry of Patient Registries

The US Agency for Healthcare Research and Quality (AHRQ), the federal agency charged with improving how healthcare dollars are spent, is announcing its intention to launch a registry of patient registries modeled after of its ClinicalTrials.gov website.

AHRQ explains in its Federal Register posting that patient registries, typically run by disease-specific foundations, have "specific characteristics" that the ClinicalTrials.gov website has not been able to adequately capture.

As a result, stakeholders "have noted that the system does not fully meet their needs" which has impeded the sharing of registry data.

The agency also notes the increasing use of patient registries in driving product development, even as several issues have emerged with the patient registry model, including the duplication of efforts, privacy concerns and "insufficient dissemination of findings that are not published in the peer-reviewed literature."

To solve these issues, AHRQ is proposing to establish a registry for patient registries modeled after the ClinicalTrials.gov program.

The registry, dubbed the Registry of Patient Registries (RoPR), is intended to help "further AHRQ's goals by making information regarding quality, appropriateness and effectiveness of health services (and patient registries in particular) more readily available and centralized."

AHRQ notes the RoPR will have four objectives: provide a searchable database of patient registries, improve data sharing through standardization, provide registry-run study results to the public and act as a patient-recruitment tool.

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AHRQ - Agency Information Collection Activities: Proposed Collection; Comment Request