The Perthes Contact Registry
Sponsored by Legg Calve Perthes Foundation
Help researchers learn more about Perthes disease and the people it impacts by joining the Perthes Contact Registry (PCR). When you agree to participate in the PCR you agree to contribute to knowledge about Perthes by answering a few questions about yourself, your health, and your quality of life. If you are filling this out as a parent or guardian, you will answer these questions for your child. We may also ask about family history.
Your participation in the registry authorizes us to contact you about:
- Opportunities to participate in studies that may lead to improved care and outcomes for patients with Perthes disease.
- Updating information you have already entered.
- Providing more information.
In addition to benefiting the research and rare disease communities, participation in the registry allows us to contact you with information about new and ongoing research studies as well as results, and clinical centers where you may be able to participate in studies.
Privacy information for the Perthes Contact Registry
By continuing, you provide consent and authorize use, storage, and disclosure of protected health information. You also agree to be contacted by LCPF regarding this registry. Enrollment is voluntary and can be withdrawn at anytime by emailing us at Registry@perthes.org
What information is collected?
The Perthes Contact Registry 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.
Who can join the Perthes Contact Registry?
Patients with Perthes disease and their family members living in any country are encouraged to join. Parents or guardians may fill out the registry for minors. Survivors are also encouraged to join.
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 Perthes 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 us at Registry@perthes.org
How the information will 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 that will allow researchers to share your data with other researchers, without revealing your identity.
Do you share my information?
All information collected about you as part of the Perthes 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 LCPF team, staff, and local, state, and federal regulatory bodies as required by law.
- Once your information is shared with others, it may no longer be protected by the HIPAA Privacy Rule.
What are the benefits of joining the registry?
- Receive news and information about new or ongoing studies for Perthes
- 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 in clinic or online
Is the PCR a clinical research study?
No, joining the Perthes Contact Registry is not the same thing as joining a clinical research study. The Perthes Contact Registry notifies you of research studies you may be interested in joining. Participating in the registry does not preclude you from participating in clinical research nor does it preclude you from joining another registry.