Global registry for patients with Fibrodysplasia Ossificans Progressiva
Official title: FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
Run by The International FOP Association · NCT02745158 · Data updated 2026-11-12
This study is creating a global registry to collect information from people with Fibrodysplasia Ossificans Progressiva and their caregivers to help improve understanding and treatment of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 800 (estimated) |
| Sponsor | The International FOP Association Academic / other |
| Locations | 1 site (North Kansas City, Missouri) |
| Status | Recruiting |
| Started | July 2015 |
| Main results expected | July 31, 2035 |
| Study ends | December 31, 2040 |
| Registry record updated | April 8, 2026 |
| Trial ID | NCT02745158 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals with a confirmed diagnosis of Fibrodysplasia Ossificans Progressiva.
✕Probably not a fit
Patients without a confirmed diagnosis of FOP will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is a global, non-interventional database that collects demographic and disease data from FOP patients and their caregivers through a secure web-based portal. The registry aims to organize the international FOP community for clinical trial participation, facilitate data sharing among patients, and enhance the understanding of FOP's natural history and treatment outcomes. A physician portal is also being developed to allow healthcare providers to contribute clinical data, linking it to patient-reported information for comprehensive insights.
Why it matters
Potential benefit: If successful, this registry could significantly improve the understanding of FOP and enhance patient care and treatment options.
How similar studies have gone: Other patient registries have shown success in improving disease understanding and facilitating clinical trials, indicating a positive precedent for this approach.
Who can join: the full rules
Show full inclusion / exclusion 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.
Where it's running
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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
North Kansas City, Missouri, United States Recruiting
Study contacts
- Study coordinator: Mark S Hamilton, PhD
- Email: mark.hamilton@ifopa.org
- Phone: 1-203-605-2122
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Observing the effects of anti-IL1 therapies on flare activity in FOP patients
This study is testing if using certain anti-inflammatory medications can help kids and teens with Fibrodysplasia Ossificans Progressiva manage their flare-ups and bone growth issues.
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Evaluating INCB000928 for treating Fibrodysplasia Ossificans Progressiva
This study is testing a new drug called INCB000928 to see if it can help people with Fibrodysplasia Ossificans Progressiva manage their symptoms better.
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Documenting long-term safety and effectiveness of palovarotene in patients with fibrodysplasia ossificans progressiva
This study is trying to see how safe and effective the medication palovarotene is for children and adults with fibrodysplasia ossificans progressiva who are already using it.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.