The HHS Agency for Healthcare Research and Quality is seeking industry input on the design and development of a Registry of Patient Registries, which would be modeled after the ClinicalTrials.gov Web site.
ClinicalTrials.gov is a centralized resource for collecting and accessing data on more than 90,500 trials since its rollout in 2000. Patient registries, with patient-reported outcome measures, support observing the natural history of disease and examining comparative effectiveness, among other uses. But the registries are far-flung and findings from them are insufficiently disseminated.
“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 AHRQ’s goals by making information regarding quality, appropriateness, and effectiveness of health services (and patient registries in particular) more readily available and centralized,” according to an agency notice published April 26.
The notice, including specific issues on which AHRQ seeks comment, is available here.
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