FOP Connection: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community

Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY

The Fibrodysplasia Ossificans Progressiva (FOP) Connection 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
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• 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.

Locations
United States
Florida
The International FOP Association
RECRUITING
Casselberry
Contact Information
Primary
Neal S Mantick, BS, MS
registry@fopconnection.org
1-617-910-8508
Backup
Betsy Bogard, BS, MS
registry@fopconnection.org
1-407-365-4194
Time Frame
Start Date: 2015-07
Estimated Completion Date: 2025-12
Participants
Target number of participants: 800
Treatments
FOP Patients
Related Therapeutic Areas
Sponsors
Leads: The International FOP Association

This content was sourced from clinicaltrials.gov