Investigating the effects of IL1 inhibition on flare activity and bone growth in a rare disease.
Official title: An Observational Study of IL1 Inhibition for Blocking ACVR1-Induced Flare Activity and Heterotopic Ossification in Fibrodysplasia Ossificans Progressiva
Funded at University of California, San Francisco · NIH-10801458 · Data updated 2026-11-12
This study is looking at how a new treatment might help kids and teens with fibrodysplasia ossificans progressiva (FOP) by reducing painful flare-ups that can cause more bone growth, and we want to see how it affects their health over time.
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 start | August 5, 2024 |
| Project end | July 31, 2028 |
| Funding year | 2024 |
| Award (this year) | $177,650 |
| NIH project number | 1R01AR083628-01 |
| Project ID | NIH-10801458 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are children and adolescents aged 6 to 18 years with fibrodysplasia ossificans progressiva who experience frequent flare-ups.
✕Less likely to help
Patients who do not have fibrodysplasia ossificans progressiva or those who do not experience frequent flare activity may not benefit from this research.
What this research studies
This research focuses on patients with fibrodysplasia ossificans progressiva (FOP), a rare condition that causes abnormal bone growth and severe loss of mobility. The study aims to observe the effects of anti-IL1 therapy on reducing flare activity, which are painful swellings that can lead to further bone growth. Patients aged 6 to 18 years who experience frequent flares will be monitored before and after starting the treatment to assess changes in flare rates and overall health outcomes. The goal is to gather important data that could support future larger studies on this therapy.
Why it matters
Potential benefit: If successful, this research could lead to improved management of flare activity and reduced bone growth in patients with FOP, enhancing their quality of life.
How similar studies have gone: Preliminary data from previous cases have shown promising results with anti-IL1 therapy in reducing flare activity, indicating potential for success in this approach.
Where this research is happening
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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.