“Participating in the Registry is one critical way we can change our world.” – Fred Kaplan, MD, University of Pennsylvania
The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the most important research projects into Fibrodysplasia Ossificans Progressiva, and is open to all individuals with FOP. It is available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish. Every person living with FOP has unique and important information to contribute, and FOP Australia encourage everyone with FOP to participate.
Goals:
- Improves the collective understanding of FOP natural history and its functional, emotional, and physiological impact over time
- Advances the understanding of FOP treatment outcomes (when treatments are available)
- Organises information from the international FOP community for potential participation in clinical trials or other research (when treatments are available)
- Enables FOP patients worldwide to report data on the course of their disease in a single place
What has been learnt from the registry so far?
Check out the 2021 FOP Registry Annual Report to see some of the information that is already emerging to change the world’s understanding of this disease. There will be ongoing reports and publications of the data gained from the FOP Registry.
How people with FOP can contribute to the FOP registry:
People with FOP may complete the surveys directly, or they can be completed by a parent, relative or caregiver on your behalf (whatever is most convenient for you!).
- Visit fopregistry.org and select “Join” to register and complete your Enrolment Survey. This important step takes 1 to 2 hours because the Enrollment Survey requests the most historical information about your FOP. You don’t have to complete this step all at once. You can start entering data, save it, and come back and finish it at your convenience. You will receive reminder emails to encourage you to complete your Enrollment Survey. You only have to do this step one time.
- After completing your Enrolment Survey, you will receive a reminder email every six months from fopregistry@fopregistry.org asking you to complete a follow-up survey to update the Registry on any new information about your FOP. This information is important since it allows researchers to understand how FOP changes over time. Depending on how much new information you have to report, follow-up surveys take approximately 15 to 30 minutes.
Educational and training videos for people with FOP:
Can clinicians contribute to the registry?
There is work underway to expand the registry to incorporate data from clinicians, but this has not yet commenced in Australia or New Zealand. FOP Australia will notify clinicians when this occurs. Interested clinicians are encouraged to contact info@fopaustralia.org to make sure you receive updates about the FOP Registry, research and updates to treatment guidelines.
