Condition: Fibrodysplasia Ossificans Progressiva (FOP) · Sponsor: The International FOP Association
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.
This description comes directly from the study's public registry record.
Mark S Hamilton, PhD · 1-203-605-2122 · mark.hamilton@ifopa.org
Sammi Kile, MS · 1-720-341-6999 · registry@ifopa.org
Always discuss trial participation with your own doctor first.
| The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) | North Kansas City, Missouri, United States | Recruiting |
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Source record: clinicaltrials.gov/study/NCT02745158