IL‑1 blockade to reduce flares and extra bone in fibrodysplasia ossificans progressiva
An Observational Study of IL1 Inhibition for Blocking ACVR1-Induced Flare Activity and Heterotopic Ossification in Fibrodysplasia Ossificans Progressiva
This project follows children and teens with FOP who start IL‑1 blocking medication to reduce painful flares and new extra bone growth.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of California, San Francisco NIH-funded |
| Lab location | 1 site (San Francisco, United States) |
| Project ID | NIH-11161515 on NIH RePORTER |
What this research studies
You would join an observational program for people with severe FOP who are being started on anti‑IL‑1 therapy by their own doctor. The team will collect flare counts and patient‑reported outcomes before treatment and then continue remote monitoring after treatment starts. Eleven participants aged about 6–18 years with frequent flares (at least six per year) will be enrolled. The study uses the patients' routine clinical care decisions rather than assigning treatments, and data are captured remotely to limit travel.
Who could benefit from this research
Good fit: Children and adolescents (approximately 6–18 years old) with genetically confirmed FOP who experience frequent flares (about six or more per year) and whose clinician plans to start anti‑IL‑1 therapy are ideal candidates.
Not a fit: People who are not starting anti‑IL‑1 therapy, have mild FOP with few flares, or are outside the study age range may not benefit from participating.
Why it matters
Potential benefit: If the findings hold up, they could support using IL‑1 blocking drugs to lower flare frequency and reduce new heterotopic bone in people with FOP.
How similar studies have performed: Small preliminary reports from four FOP patients treated with anti‑IL‑1 showed large (60–90%) reductions in flare activity, but larger observational and controlled studies are still needed.
Where this research is happening
San Francisco, United States
- University of California, San Francisco — San Francisco, United States (Active)
Researchers
- Principal investigator: Hsiao, Edward C — University of California, San Francisco
- Study coordinator: Hsiao, Edward C
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.