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The Fibrodysplasia Ossificans Progressiva (FOP) Registry
FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Participants must have a confirmed diagnosis of FOP. * Participants (or a parent or legal guardian) must be willing and able to provide written informed consent. Exclusion Criteria: * There are no exclusion criteria.
About the study
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.
Sponsor: The International FOP Association · Participants: 800 · Started: 2015-07
Contact the study team
- Mark S Hamilton, PhD · Phone: 1-203-605-2122
- Sammi Kile, MS · Phone: 1-720-341-6999
Official record on ClinicalTrials.gov — NCT02745158
Locations in the U.S.
| Missouri | The International Fibrodysplasia Ossificans Progressiva Association (IFOPA), North Kansas City |
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.