The Rare Diseases Clinical Research Network (RDCRN) Prader-Willi Contact Registry is a way for patients with Prader-Willi and their family members to learn about Prader-Willi 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.
- 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.
- We plan to give you opportunities to participate in studies that may lead to improved care and outcomes for patients
- You can choose to share your information directly with Prader-Willi study doctors, research staff and patient advocacy groups (PAGs).
- Your information will be stored in our secure database and kept confidential to the extent permitted by law.
- We will contact you when new Prader-Willi research studies are available.
- We will contact you when new Prader-Willi clinical sites are available.
- We may provide you with study results.
Click “Join” to begin enrolling in the RDCRN Prader-Willi Contact Registry. You will be asked to provide consent and authorize use and disclosure of protected health information during enrollment.
Already joined? Login here
Contact the RDCRN at RDCRNContactRegistry@epi.usf.edu if you have questions about the RDCRN Contact Registry.