The Fibrodysplasia Ossificans Progressiva (FOP) Registry

Recruiting now

Conditions studied: Fibrodysplasia Ossificans Progressiva (FOP)

In brief

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.

Key facts

Study ID

NCT02745158

Run by

The International FOP Association

People needed

800

Starts

2015-07-01

Expected to finish

2040-12-31

Last updated by the study team

2026-04-08

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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 may not qualify if…

• There are no exclusion criteria.

Where it is running

• The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) — North Kansas City, Missouri, United States (enrolling)

Full record on ClinicalTrials.gov

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