The Fibrodysplasia Ossificans Progressiva (FOP) Registry
FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
The International FOP Association
800 participants
Jul 1, 2015
OBSERVATIONAL
Conditions
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.
Eligibility
Inclusion Criteria2
- 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.
Interested in this trial?
Get notified about updates and connect with the research team.
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT02745158