Medicine:RDCRN Contact Registry
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry will be a patient contact registry sponsored by the National Institutes of Health. Residents of the United States who are not a citizen of any European Union member state or the United Kingdom, and are 18 years of age and older, are eligible to participate in the contact registry. This registry will collect 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. The data will be used for the purpose of providing targeted information regarding a specific rare disease. Registrant information will not be shared with anyone without the registrant’s permission.
Function
The purpose of the contact registry is to collect and maintain data about individuals who are interested in receiving information about rare disease research and opportunities for research participation. It will also provide a platform for disseminating information relevant to the RDCRN community and conducting Institutional Review Board (IRB)-approved research about patients with rare diseases, including surveys.
Funding
The RDCRN Contact Registry will be operated by the Rare Diseases Clinical Research Network which is funded by the National Institutes of Health and the Office of Rare Diseases Research. It will be governed by the RDCRN Steering Committee, which is advised by a network-wide Oversight Committee. The Oversight Committee will be composed of principal investigators from network consortia, representatives from patient advocacy and support groups affiliated with consortia, members of the Office of Rare Diseases Research, as well as members of the RDCRN Data Management and Coordinating Center. The contact registry will be designed, hosted, and maintained by the RDCRN's Data Management and Coordinating Center at Cincinnati Children's Hospital Medical Center.
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