The federal Registry of Patient Registries (RoPR) has had ups and downs in its brief history but today complements the federal 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.

Then it shut down for almost a year as the initial contract expired and it took time to award a new contract, says Michelle Leavy, manager of health policy in the Real World Late Phase Research unit of Quintiles. Operational again last fall and having added about 50 more registries, Quintiles now is raising awareness of the scope and benefits of RoPR.

Disease-specific registries within the Registry of Patient Registries contain de-identified data about the medical conditions and treatments of patients participating in clinical trials to use for research, or to collect post-marketing data when the Food and Drug Administration wants more studies on a drug or device already approved. Registries also may collect de-identified data to use for secondary research such as identifying treatment patterns, geographical variations and outcomes.

Registries also can help patients connect with researchers conducting clinical trials or other studies, as well as patient advocacy groups, Leavy says. Increasingly, registries covering rare diseases are joining RoPR, bringing new hope to those afflicted.

The Coordination of Rare Diseases (CoRDS) registry at Sanford Health system in the Dakotas, for instance, is a central resource for connecting researchers and patients. Other registries specifically focusing on rare diseases and linking researchers and patients include Alpha-1 Foundation Research Registry, Enroll-HD (Huntington’s disease) and the National Amyotrophic Lateral Sclerosis (ALS) Registry, among others. “It has been encouraging to see the different types of registries that have emerged since the site was brought back up,” Leavy says.

To get information on more rare diseases online, RoPR is starting a new outreach program to reach patients and advocates and educate them on the services that registries and the national site offer.

Quality improvement registries also are available on the Registry of Patient Registries. These collect data on diseases, services or procedures to aid in development of quality measures.

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