Welcome to the FOP Registry!
A disease registry owned and operated by the FOP community through the IFOPA.
The FOP Registry is the largest and most comprehensive database of medical information about fibrodysplasia ossificans progressiva (FOP) and the people living with it. Anyone with FOP can participate—regardless of age, location, or stage of progression. By sharing your experience, you help build a clearer picture of the FOP journey for everyone. Each update strengthens the collective knowledge of FOP, ensuring every voice contributes to advancing science, improving care, and moving closer to meaningful treatments. By completing simple surveys every six months, you provide critical insights into how FOP changes over time—information essential for researchers, clinicians, and the community. Participating is easy, meaningful, and a powerful way to make a difference.
Have Questions?
Visit our FAQ page- WHY SHOULD I PARTICIPATE?
- The FOP Registry was started in 2015, and since then, it has already become a tool that has helped doctors and researchers better recognize the complexities of the condition and improve care. By taking part in the FOP Registry, you help grow the knowledge about FOP, contribute to helping find effective treatments and possibly a cure, help doctors better understand FOP and improve care, and take part in something that directly benefits the entire FOP community. Learn more
- WHO CAN PARTICIPATE?
- The FOP Registry is open to anyone living with FOP. Information can be provided by the individual or a caregiver who knows their diagnosis, symptoms, flare-ups, progression, and quality of life. The Registry is available in English, French, German, Italian, Polish, Portuguese, Russian, and Spanish, making it accessible to participants worldwide. Learn more
- IS MY INFORMATION SECURE?
- Registry surveys are completed every six months on a secure, easy-to-use website via computer or smartphone. Participant information is tightly protected—any data shared for research is de-identified to ensure privacy. The FOP Registry Advisory Boards guide the Registry’s development, oversight, and help with research publications, ensuring your data is used responsibly to advance understanding and care for the FOP community. Learn more
Capturing shared experiences over time generates consistent insights that advance research, improve care, and deepen understanding of the FOP journey.
To our family, the Registry represents hope. It’s a place where our son’s journey—his progress, his setbacks, his story—is counted. It means his experience matters, and that his life is helping shape the science that could one day lead to a medicine, or even a cure.
The FOP Registry (NCT02745158) is made possible by
