FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
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.
• 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.