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The Fibrodysplasia Ossificans Progressiva (FOP) Registry

NCT02745158 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 800

Last updated 2026-04-08

No results posted yet for this study

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.

Conditions

  • Fibrodysplasia Ossificans Progressiva (FOP)

Sponsors & Collaborators

  • The International FOP Association

    lead OTHER

Principal Investigators

  • Mark Hamilton, PhD · International Fibrodysplasia Ossificans Progressiva Association

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2015-07-31
Primary Completion
2035-07-31
Completion
2040-12-31

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02745158 on ClinicalTrials.gov