FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
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.
Description
The 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. No experimental intervention is involved. 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. The Registry collects data through two sources. First, the Patien…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * 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. Exclusion Criteria: * There are no exclusion criteria.
Location
- The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)North Kansas City, Missouri