About Fibrodysplasia Ossificans Progressiva
Fibrodysplasia ossificans progressiva is an ultra-rare and severely disabling disorder caused by a gain-of-function mutation in ACVR1 (encoding ALK2), a BMP type I receptor, leading to progressive and irreversible heterotopic ossification of skeletal muscle, fascia, tendons, and ligaments. The condition is characterised by episodic inflammatory flares that trigger the formation of ectopic bone, ultimately encasing the skeleton and causing profound loss of mobility. A malformed first toe (hallux valgus or monophalangism) present at birth is a pathognomonic clinical sign that permits early diagnosis before ossification begins.
Common Clinical Features
Clinical Trial Eligibility Tips
What to know before applying to Fibrodysplasia Ossificans Progressiva trials.
Avoid biopsies, intramuscular injections, or surgical procedures unless absolutely life-threatening — these can trigger catastrophic flare and new bone formation; disclose this history to trial staff immediately.
Baseline whole-body 18F-NaF PET-CT or nuclear bone scan documenting extent of heterotopic ossification is standard for clinical trial enrolment; ensure imaging is current.
Active flare at time of enrolment may be an exclusion criterion — document current flare status, recent flare history, and any corticosteroid use prescribed for flare management.
Patient Resources
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