Global registry for patients with Fibrodysplasia Ossificans Progressiva
FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
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 |
|---|---|
| Enrollment | 800 (estimated) |
| Sex | All |
| Sponsor | The International FOP Association Academic / other |
| Locations | 1 site (North Kansas City, Missouri) |
| Trial ID | NCT02745158 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals with a confirmed diagnosis of Fibrodysplasia Ossificans Progressiva.
Not a fit: Patients without a confirmed diagnosis of FOP will not benefit from this registry.
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 performed: Other patient registries have shown success in improving disease understanding and facilitating clinical trials, indicating a positive precedent for this approach.
Eligibility criteria
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 this trial is running
North Kansas City, Missouri
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.