Join the RDCRN 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. Participation is completely voluntary and you may choose to withdraw at any time. There is no cost to join the Contact Registry.
When you join the RDCRN Contact Registry, you will be asked to… ("You" means you, your child or the person for whom you are providing care)
Tell us about yourself
- Contribute to knowledge about rare diseases by answering questions about yourself, your health, and your quality of life. We may also ask you questions about your family history.
- It may take from 5 to 30 minutes to answer the questions.
Agree to let us contact you
We may contact you about:
- Opportunities to participate in studies that may lead to improved care and outcomes for patients with rare diseases
- Updating information you have already entered
- Providing more information
The RDCRN Contact Registry will…
Let you share your information
- You can choose to share your information directly with study doctors, research staff and patient organizations (PAGs).
- Your information will be stored in our secure database and kept confidential to the extent permitted by law.
Keep you informed
We may send you information about:
- New and ongoing research studies
- Clinical centers where you may be able to participate in studies
- What is being learned from studies
- Other announcements and activities
How to Join
Type your disease name in the box below, then click the disease link to join.
Already joined? Login Here