Join the RDCRN Prader-Willi Contact Registry

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.

When you join the RDCRN Prader-Willi 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

Icon
  • 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

Icon
  • We plan to give you opportunities to participate in studies that may lead to improved care and outcomes for patients

The RDCRN Contact Registry will…

Let you share your information

Icon
  • You can 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.

Keep you informed

Icon
  • 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 send you information about rare disease.
  • We may provide you with study results.

Privacy Information
The only risk of joining the RDCRN Prader-Willi Contact Registry is risk to your privacy, similar to that encountered through everyday use of the internet. Click on each link below and read the information before you decide to join.

Icon
  • The RDCRN Contact Registry will collect protected health information about you (or your family member) such as name, date of birth, address, email address, and disease and treatment information.
    • We collect information about your identity and your health to conduct research that might help us identify ways to improve care for rare diseases. All information will be used for research purposes only and all responses will be kept private and confidential.
    • We may use information you provide to assign a unique universal identification number known as a GUID that will allow researchers to share your data with other researchers, without revealing your identity.
    • You may revoke your authorization at any time. If you choose to withdraw your authorization, you will no longer be a participant in the RDCRN Contact Registry. We will stop collecting new information about you, but will still use the information we have collected about you before you withdrew your authorization.
    • To revoke your authorization, contact the RDCRN DMCC at: RDCRNContactRegistry@epi.usf.edu.
    • All information collected about you as part of the RDCRN Contact Registry will be kept confidential to the extent permitted by law.
    • Your protected health information may be shared with the researchers or patient advocacy groups that you choose to share your information with, members of the RDCRN team, USF IRB and staff and local, state, and federal regulatory bodies that oversee the safety of the network, as required by law.
    • Once your information is shared with others, it may no longer be protected by the HIPAA Privacy Rule.

Join

By clicking "Join" you consent to participate in the RDCRN Prader-Willi Contact Registry and authorize use and disclosure of protected health information.

Already Registered? Login

Contact the RDCRN at RDCRNContactRegistry@epi.usf.edu if you have questions about the RDCRN 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

Patients with rare diseases and their family members living in any country are encouraged to join.

You may choose to share your contact information with researchers in and/or with patient advocacy groups. Sharing your information is completely optional.

If you agree to share your contact information, the information you enter into the RDCRN Contact Registry Enrollment Form will be sent to the researchers and/or patient advocacy groups that you choose so that they may contact you directly.

When you share your contact information with researchers, they may use your information to match you with current studies. They may also contact you to ask you for additional information in order to determine whether you can join a study.

If you do not want any of your contact information to be sent to researchers or patient advocacy groups, you can choose "Please do not share my information with anyone". Choosing not to share your information will not affect your ability to join the RDCRN Contact Registry or research studies.

No, joining the RDCRN Contact Registry is not the same thing as joining a clinical research study. The RDCRN Contact Registry notifies you of research studies you may be interested in joining.

Once you join the RDCRN Contact Registry, you will receive emails with information about current research studies for your disease. In these emails, you will be given information about how to join the research study. You will also be able to contact the researchers to ask any questions about the study.

Yes. Choosing to join the RDCRN Contact Registry does not affect your ability to join other registries.