The Fibrodysplasia Ossificans Progressiva (FOP) Registry
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorThe International FOP Association
About this trial
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.
Eligibility criteria
Qualifiers
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.
Disqualifiers
There are no exclusion criteria.
Trial design
Treatments tested in this trial
- Not listed
Trial groups
800 Participants
are grouped into 1 trial groupSponsors and collaborators
Source ClinicalTrials.gov