Rare Diseases Clinical Research Network Contact Registry


The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a way for patients with rare diseases and their family members to learn about research studies they may be able to join. The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physicians, scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

What are the benefits of joining the Contact Registry?
You will:

  • Receive news about new or ongoing studies for your disease
  • Receive information about your disease
  • Receive information on activities from patient advocacy groups
  • Have the opportunity to share information about yourself with researchers and patient advocacy groups
  • Have a chance to be contacted directly by researchers to join studies
Registry Location International - available to Australians
Registry Participation Voluntary
Registry Contact

RDCRN NCATS Program Director
E: urvtiin@mail.nih.gov

Adding New Patients to Registry

How to Join
The Rare Diseases Clinical Research Network studies over 190 diseases. To determine if a specific rare disease has a related registry, search for the disease under the “How to Join” heading – if there is a registry, a link to join that registry will be displayed. Click on the link to complete the online registration.

Please see the website for more information