My Consent

Please review the consent form below and click "Join" to participate.
("You" means you, your child or the person for whom you are providing care)
Key Information
  • The purpose of the Rare Diseases (RD) Registry is to provide information about rare disease studies in which you may be able to participate.
  • Participation in the RD Registry is voluntary, and there is no cost to join.
  • The RD Registry will collect personal information and protected health information about you such as name, date of birth, address, email address, disease and treatment information. You can view and edit the information you provide by logging into your RD Registry account. We collect this information to conduct research that might help identify ways to improve care for patients with rare diseases.
  • Your information will be stored at the Health Informatics Institute (HII) at the University of South Florida (USF) located in the United States, for the duration of the RD Registry.
  • All information collected about you as part of the RD Registry will be used for research purposes only and will be kept confidential to the extent permitted by law.
  • The only risk of joining the RD Registry is risk to your privacy, similar to the risk through everyday use of the internet. Participating in the RD Registry will not affect your ability to seek medical care and treatment.
  • Your information may be shared with the researchers or patient advocacy groups with whom you choose to share your information, members of the RD team in the US or other countries, USF Institutional Review Board (IRB) and staff, and local, state, and federal regulatory bodies that provide oversight, as required by law. Any of your information may be shared with the aforementioned entities without any additional informed consent from you.
  • Once your information is shared with others, it may no longer be protected by the HIPAA Privacy Rule.
  • We may use information you provide to assign a globally unique identifier (GUID) that will allow researchers to share your data with other researchers, without revealing your identity.
  • You may withdraw or take away your authorization at any time by writing to the USF HII at cra@hiidatacenter.org.
  • If you choose to withdraw your authorization, you will no longer be a participant in the RD Registry. We will stop collecting new information about you and will no longer share your information with researchers or patient advocacy groups.
When you join the RD Registry, you will be asked to...
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 that will help researchers who study and treat rare diseases
The RD Registry will...
Let you share your information
  • You can choose to share your information directly with 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.
  • If you are enrolled in another one of our partnering registries or studies, we may link your information previously collected in those registries or studies with the data obtained in this registry.
Keep you informed
We may send you information about:
  • Rare diseases
  • 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
Privacy Information
Who do I contact if I have questions about the collection and storage of my information?
  • You have the right to access, edit, erase, restrict processing or object to processing of your information as well as the right to data portability. To exercise your rights or if you have any questions about the collection and storage of your information, please contact the Health Informatics Institute at the University of South Florida at cra@hiidatacenter.org.
  • If you are a European Economic Area resident and have a complaint about the collection or storage of your personal information, you may contact your data supervisory authority.

By clicking "Join" you consent to participate in the RD Registry

and authorize use and disclosure of personal information and protected health information as described herein.