The Agency for Healthcare Research and Quality will build the Registry of Patient Registries, the central collection point for information from all patient registries in the nation.
The national patient registry, authorized in the 2009 economic stimulus law, will follow the model of the national clinical trials registry at ClinicalTrials.gov, according to an AHRQ notice published in the Federal Register. Attempts have been made to use the trials registry to also house patient registry data, but the system hasn’t meet stakeholders’ needs, the agency notes. The trials registry launched in 2000 and now holds information on nearly 129,000 trials in 179 nations.
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“To ensure that resources are used in the most efficient manner, registries need to be listed in a manner similar to that of trials in ClinicalTrials.gov,” the AHRQ notice states. “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.”
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