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Fibrodysplasia ossificans progressiva
MONDO:0007606Fibrodysplasia ossificans progressiva (FOP) is a severely disabling heritable disorder of connective tissue characterized by congenital malformations of the great toes and progressive heterotopic ossification that forms qualitatively normal bone in characteristic extraskeletal sites.
Also known as: FOP, Stone Man syndrome, Stone man syndrome, fibrodysplasia ossificans progressiva, fop, progressive myositis ossificans, myositis ossificans progressiva
10 clinical trials for this condition and its sub-types, 10 tagged with Fibrodysplasia ossificans progressiva itself.
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Promising drug combo may stop painful flare-ups in rare bone disease
Disease control Recruiting nowThis study looks at whether anti-inflammatory drugs (like anakinra or canakinumab) can reduce painful flare-ups and prevent extra bone growth in people with a rare genetic condition called fibrodysplasia ossificans progressiva (FOP). Eleven people with severe FOP will be tracked …
Sponsor: University of California, San Francisco • Aim: Disease control
Last updated Aug 08, 2026 00:03 UTC
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New drug aims to stop extra bone formation in rare disease
Disease control Recruiting nowThis Phase 2 trial tests an experimental drug called INCB000928 (zilurgisertib) in people with fibrodysplasia ossificans progressiva (FOP), a rare genetic condition where soft tissues turn into bone. About 98 participants aged 2 and older will receive either the drug or a placebo…
Phase 2 • Sponsor: Incyte Corporation • Aim: Disease control
Last updated Jun 27, 2026 12:36 UTC
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New registry tracks Real-World safety of FOP drug palovarotene
Knowledge-focused Recruiting nowThis registry study follows about 100 people with FOP, a rare disease where soft tissue turns to bone. Some participants take palovarotene (an approved treatment), while others do not. Researchers will track side effects, flare-ups, and daily function over time to see how well th…
Sponsor: Ipsen • Aim: Knowledge-focused
Last updated Sep 02, 2026 00:00 UTC
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Worldwide FOP database launches to unlock secrets of rare bone disease
Knowledge-focused Recruiting nowThis global registry collects information from people with Fibrodysplasia Ossificans Progressiva (FOP), a rare condition where soft tissues turn into bone. Up to 800 patients worldwide can report their symptoms, flare-ups, and mobility changes through a secure online portal. The …
Sponsor: The International FOP Association • Aim: Knowledge-focused
Last updated Jun 27, 2026 12:05 UTC