The federal Registry of Patient Registries (RoPR) has had ups and downs in its brief history but today complements the federal ClinicalTrials.gov Web site by hosting information for patients, physicians and researchers on about 120 diseases.
The Agency for Healthcare Research and Quality owns RoPR, which Quintiles, a biopharmaceutical research firm and conductor of clinical trials, designed and operates under a contract. The registry went live in December 2012 for a protracted pilot period that lasted through September 2013, and by that time had grown to host about 70 disease-specific registries.
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