Clinical trial · Observational
The Fibrodysplasia Ossificans Progressiva (FOP) Registry
FOP Registry: A Global Registry for the Fibrodysplasia Ossificans Progressiva Community
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Fibrodysplasia Ossificans Progressiva (FOP) | — | UNRESOLVED | — |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (1)
- label
- FOP Patients
- description
- None. IFOPA-REG-001 is a FOP patient observational registry study.
Primary outcomes (3)
- measure
- Patient Reported Changes in New Bone Growth Using a Patient-Directed Survey Developed by the IFOPA
- timeFrame
- Baseline, then every six months for up to 10 years
- description
- The patient is able to report changes in new bone growth among 27 joints and body locations.
- measure
- Patient Reported Changes in Episodic Flare-Ups Using a Patient-Directed Survey Developed by the IFOPA
- timeFrame
- Baseline, then every six months for up to 10 years
- description
- The patient is able to report changes in episodic flare-ups among 27 joints and body locations.
- measure
- Patient Reported Changes in Mobility Using a Patient-Directed Survey Developed by the IFOPA
Eligibility
Eligibility (as posted)
- Sex
- All
Show eligibility criteria text
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.
References
Publications (1)
- DERIVEDPignolo RJ, Kimel M, Whalen J, Kawata AK, Artyomenko A, Kaplan FS. The Fibrodysplasia Ossificans Progressiva Physical Function Questionnaire (FOP-PFQ): A patient-reported, disease-specific measure. Bone. 2023 Mar;168:116642. doi: 10.1016/j.bone.2022.116642. Epub 2022 Dec 13. PMID 36526263