The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry
Launched by THE INTERNATIONAL FOP ASSOCIATION · Apr 15, 2016
Trial Information
Current as of July 09, 2025
Recruiting
Keywords
ClinConnect Summary
The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is a worldwide program designed to collect important information from patients with FOP and their caregivers. This is a voluntary and secure online database where participants can share details about their condition. The main goals of the registry are to bring together the FOP community, help organize clinical trials, and improve our understanding of how FOP affects patients over time and how different treatments work.
To be eligible for this registry, you need to have a confirmed diagnosis of FOP, and either you or a parent or legal guardian must be willing to provide written consent to participate. There are no specific exclusion criteria, which means that most patients with FOP can join. By participating, you will be contributing valuable information that may help researchers and doctors better understand FOP and improve care for everyone affected by this rare condition.
Gender
ALL
Eligibility criteria
- 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.
About The International Fop Association
The International FOP Association (IFOPA) is a leading non-profit organization dedicated to supporting individuals affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare and debilitating genetic condition characterized by abnormal bone growth in muscles and connective tissues. Committed to advancing research, fostering collaboration among researchers, and raising awareness about FOP, IFOPA plays a pivotal role in advocating for patients and their families. By sponsoring clinical trials and initiatives, the organization seeks to improve treatment options and enhance the quality of life for those impacted by this challenging condition, while also promoting education and resources to empower the global FOP community.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Casselberry, Florida, United States
Patients applied
Trial Officials
Betsy Bogard, BS, MS
Study Director
The International FOP Association
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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