The Fibrodysplasia Ossificans Progressiva (FOP) Registry (NCT02745158)
FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
🩺 Plain-English Summary (8th-Grade Level)
The Fibrodysplasia Ossificans Progressiva (FOP) Registry is a global, non-interventional, voluntary database that captures demographic and disease data directly from FOP patients and their caregivers via a secure, web-based patient portal. A physician portal (in development) will allow physicians to enter clinical data about their patients. The objectives are to organize the international FOP community for participation in clinical trials; to enable FOP patients worldwide to report data in a shared forum; to improve the collective understanding of FOP natural history; and to advance the understanding of FOP treatment outcomes.
Who can join: Review the eligibility criteria below.
Location: The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) — North Kansas City, Missouri
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) — North Kansas City, Missouri
📞 Contact the Study Coordinator
Phone: (203) 605-2122
Email: mark.hamilton@ifopa.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Fibrodysplasia Ossificans Progressiva (FOP)
- To Assess the Efficacy, Safety, and Tolerability of INCB000928 in Participants With Fibrodysplasia Ossificans Progressiva — Rochester, Minnesota
- IL1 Inhibition in FOP — San Francisco, California
Explore by condition: All Fibrodysplasia Ossificans Progressiva (FOP) clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.