Purpose of the Rare Diseases Clinical Research Network:
The Rare Diseases Clinical Research Network (RDCRN) was created to facilitate collaboration among experts in many different types of rare diseases. Its goal is to contribute to the research and treatment of rare diseases.
The types of research the RDCRN facilitates:
The RDCRN facilitates basic research about a rare disease, such as:
- how to identify people at risk for the disease
- how the disease progresses over time
- what are the symptoms of the disease
- when does the disease begin, and does it change life expectancy
The RDCRN also encourages research into the development of new approaches to diagnosis, prevention, and treatment of rare diseases.
The RDCRN is part of a government agency:
The RDCRN is part of the U.S. National Institutes of Health's Office of Rare Diseases.
The RDCRN has research consortia:
Researchers, experts, and organizations are grouped into disease-based clinical research consortia within the RDCRN. The consortia are:
- Angelman, Rett, and Prader-Willi Syndromes Consortium
- Urea Cycle Disorders Consortium
- Vasculitis Clinical Research Consortium
- Consortium for Clinical Investigation of Neurological Channelopathies (CINCH)
- Genetic Diseases of Mucociliary Clearance Consortium
How the RDCRN can help you:
Once you have found the correct research consortium for your disease, you will be able to join the contact registry for clinical research trials. You will also find several helpful resources that include participating clinical center information, support and advocacy group information and other useful links.
For more information:
Rare Diseases Clinical Research Network
NIH Office of Rare Diseases
