The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to connect rare disease patients with researchers and advance rare disease research. The registry will collect and maintain the contact information of people who want to receive information about rare diseases research. It will also inform participants about opportunities to participate in research.
A contact registry is a database that collects and stores information about patients diagnosed with specific diseases. A registry can help connect patients to clinical trials (research studies) as well as connect researchers to patients interested in furthering research. It allows researchers in academia and industry to identify people willing to be involved in clinical trials.
The registry is hosted by the Rare Diseases Clinical Research Network (RDCRN), a network of 20 consortia (research groups) and a Data Management and Coordinating Center (DMCC) funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS). The RDCRN’s 20 consortia—teams of researchers, patients, and clinicians—each focus on a group of rare disorders. The network fosters collaborative research to better understand, diagnose, and treat rare diseases.
The RDCRN Contact Registry will support the dissemination of information relevant to the RDCRN community. It will also offer RDCRN investigators and patient advocacy groups access to data that will help them assess the feasibility of conducting a proposed study.
To join the registry, individuals must be 18 years of age or older. It is open to those who have a rare disease, are a caregiver for someone with a rare disease, and unaffected individuals. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. The NIH’s Genetic and Rare Diseases Information Center, hosted by NCATS, offers information on nearly 7,000 rare diseases.
The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). Now in its fourth five-year funding cycle, RDCRN is a partnership with funding and programmatic support provided by Institutes, Centers, and Offices across NIH, including the National Institute of Neurological Disorders and Stroke, the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Heart, Lung, and Blood Institute, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health, and the Office of Dietary Supplements.