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The Fibrodysplasia Ossificans Progressiva (FOP) Registry

RECRUITINGSponsored by The International FOP Association
Actively Recruiting
SponsorThe International FOP Association
Started2015-07
Est. completion2035-07-31
Eligibility
Healthy vol.Accepted
Locations1 site
View on ClinicalTrials.gov →

NCT02745158

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

Healthy volunteers accepted
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.

Conditions2

CancerFibrodysplasia Ossificans Progressiva (FOP)

Locations1 site

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
North Kansas City, Missouri, 064116
Mark S Hamilton, PhD1-203-605=2122mark.hamilton@ifopa.org

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