Actively Recruiting
The Fibrodysplasia Ossificans Progressiva (FOP) Registry
Led by The International FOP Association · Updated on 2026-04-08
800
Participants Needed
1
Research Sites
1330 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
The Fibrodysplasia Ossificans Progressiva (FOP) Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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.
You will not qualify if you...
- There are no exclusion criteria.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
North Kansas City, Missouri, United States, 064116
Actively Recruiting
Research Team
M
Mark S Hamilton, PhD
CONTACT
S
Sammi Kile, MS
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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