- Contact Registry
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The RDCRN Contact Registry is a registry operated by the NIH Rare Diseases Clinical Research Network (RDCRN). This registry collects basic data (contact information, diagnosis). This data is typically reported by patients or family members and it is used for the purpose of providing targeted information (in form of e-mail) regarding a specific rare disease and relevant clinical research studies. The RDCRN Contact Registry is governed by the RDCRN Steering Committee which is advised by a network wide Registry (Advisory) Committee. The Contact Registry was designed and is hosted and maintained by the University of South Florida.
Contents
What The RDCRN Contact Registry Does
The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of research projects done by the RDCRN, National Institutes of Health, and ClinicalTrials.gov.
Funding
The Contact Registry is funded by the Rare Diseases Clinical Research Network which is funded by the National Institutes of Health and Office of Rare Diseases Research.
References
External links
Categories:- Rare diseases
- National Institutes of Health
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