The Fibrodysplasia Ossificans Progressiva (FOP) Registry

Part of paid clinical trials in North Kansas City, Missouri.

Sponsor
The International FOP Association
Study ID
NCT02745158
Status
Recruiting
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Conditions

  • Fibrodysplasia Ossificans Progressiva (FOP)

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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 Dates

Start date
Jul 31, 2015
Status verified
Apr 2026
Primary completion
Jul 31, 2035
Completion
Dec 31, 2040

Study Design

Enrollment
800 participants (estimated)

Arms

  • Arm: FOP Patients
    None. IFOPA-REG-001 is a FOP patient observational registry study.

Primary Outcome Measure

Patient Reported Changes in New Bone Growth Using a Patient-Directed Survey Developed by the IFOPA [ Time Frame: Baseline, then every six months for up to 10 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)North Kansas CityMissouri064116
Mark S Hamilton, PhD
[email protected]
1-203-605=2122
Sammi Kile, MS
[email protected]
1-720-341-6999

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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)· North Kansas City, MO

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