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- The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a patient contact registry sponsored by the National Institutes of Health (NIH). The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about RDCRN research. It connects patients with researchers in order to advance rare diseases research. The Rare Diseases Clinical Research Network (RDCRN) is a U.S.-based research network funded by the NIH. It fosters research to better understand, diagnose, and treat rare diseases. Its 20 consortia—teams of scientists, physicians, and patients—each study a group of related rare diseases. Established by Congress under the Rare Diseases Act of 2002, the RDCRN is an initiative of the Office of Rare Diseases Research at the NIH's National Center for Advancing Translational Sciences. Future research may produce helpful information for those with rare diseases. Individuals who are18 years of age and older and have a rare disease, are a caregiver for someone with a rare disease, or an unaffected individual can join the RDCRN registry. The contact registry collects basic data (i.e. contact information, diagnosis, medical history) to be stored in a secure, computerized database hosted by the RDCRN's Data Management and Coordinating Center based at Cincinnati Children's Hospital Medical Center. (en)
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- The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a patient contact registry sponsored by the National Institutes of Health (NIH). The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about RDCRN research. It connects patients with researchers in order to advance rare diseases research. (en)
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- Rare Diseases Clinical Research Network Contact Registry (en)
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