Fibrodysplasia Ossificans Progressiva clinical trials at UCSF

2 in progress, 1 open to eligible people

Fibrodysplasia ossificans progressiva is a rare inherited disorder where muscle and soft tissue slowly become bone. UCSF is studying people who take off-label anti-IL1 drugs and is recording flares and extra bone formation. UCSF is collecting clinical exams, scans, and blood tests during the study.

Showing trials for

  • IL1 Inhibition in FOP

    open to eligible people ages 6-30

    This is an observational pre-post study to observe if the off label use of anti-IL1 therapies, such as anakinra or canakinumab, can block ACVR1-induced flare activity and heterotopic ossification in FOP. It will also generate key tools and preliminary data that are needed to design a future Phase II study. This study specifically focuses on patients with severe FOP who are being considered by their medical team for rescue therapy with anti-IL1 therapy. Preliminary data suggests patients experience significant decreases in flare frequency when taking anti-IL1 therapy, but other measures of efficacy remain unassessed, such as changes in heterotopic ossification formation, changes in pain medication use, and changes in functionality.

    San Francisco, California

  • Andecaliximab in Participants With Fibrodysplasia Ossificans Progressiva (FOP)

    Sorry, in progress, not accepting new patients

    This study is researching an experimental drug called andecaliximab. The study will include pediatric and adult patients with fibrodysplasia ossificans progressiva (FOP). The study will evaluate how safe and effective andecaliximab is in patients with FOP. The study is looking at several research questions, including: - Safety of andecaliximab in participants with FOP - Whether andecaliximab reduces the number of new heterotopic bone lesions (Heterotopic Ossification; HO) - Whether andecaliximab reduces the number or severity of flare-ups - Pharmacokinetics/pharmacodynamics (PK/PD): How much study drug is in your blood at different times and its impact on blood biomarker(s) - Whether the body makes antibodies against the study drug (which could make the drug less effective or could lead to side effects)

    San Francisco, California and other locations

Our lead scientists for Fibrodysplasia Ossificans Progressiva research studies include .

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