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.
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