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The Fibrodysplasia Ossificans Progressiva (FOP) Registry

StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Primary completion date: Jul 2025 to Jul 31, 2035v3 Show 4 more changesShow less
    • Study completion date: Dec 2025 to Dec 31, 2040
    • Study site revised
    • Study description shortened, about 1 word
    • Study title shortened, about 1 word
  2. Re-verified, no change to tracked fieldsv2
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT02745158
Lead Sponsor The International FOP Association
Conditions
(from sponsor)		 Fibrodysplasia Ossificans Progressiva (FOP)
Related terms Hallux Valgus, Myositis Ossificans, Ossification, Heterotopic, Osteochondroma
Enrollment 800 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov