Join the RDCRN Porphyrias Contact Registry
The Rare Diseases Clinical Research Network (RDCRN) Porphyrias Contact Registry is a way for patients with porphyrias and their family members to learn about Porphyrias Consortium 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 Porphyrias 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 plan to contact you about opportunities to participate in studies that may lead to improved care and outcomes for patients with rare diseases.
- We may also contact you to ask you more questions or to update information you have already entered.
The RDCRN Porphyrias Consortium Contact Registry will…
Let you share your information
- You can share your information directly with Porphyrias Consortium 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
- We will contact you when new Porphyrias Consortium research studies are available.
- We will contact you when new Porphyrias Consortium clinical sites are available.
- We may send you information about rare diseases.
- We may provide you with study results.
The only risk of joining the RDCRN Porphyrias 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.
What information will be collected?
- 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.
How will my information be used?
- 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.
Can I change my mind later?
- 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.
Will my information be shared?
- 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.
By clicking "Join" you consent to participate in the RDCRN Porphyrias Consortium Contact Registry and authorize use and disclosure of protected health information.
Already joined? Contact Registry Login
Contact the RDCRN at RDCRNContactRegistry@epi.usf.edu if you have questions about the RDCRN Contact Registry.