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The Fibrodysplasia Ossificans Progressiva (FOP) Registry
Sponsor: The International FOP Association
Summary
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.
Official title: FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
800
Start Date
2015-07
Completion Date
2040-12-31
Last Updated
2026-04-08
Healthy Volunteers
No
Locations (1)
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
North Kansas City, Missouri, United States