Advancing Craniosynostosis Care: Pilot/Feasibility Governance Core
Official title: Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot/Feasibility Governance Core
Funded at Children's Hosp of Philadelphia · NIH-11397558 · Data updated 2026-11-12
A pilot and governance program to speed up practical ideas for better care for children with syndromic craniosynostosis.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project start | August 19, 2025 |
| Project end | May 31, 2030 |
| Funding year | 2026 |
| Award (this year) | $147,494 |
| NIH project number | 5U54DE035976-02 |
| Project ID | NIH-11397558 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and families affected by syndromic craniosynostosis who may participate in future pilots, trials, or related studies through the consortium.
✕Less likely to help
Participants would not directly benefit from the Pilot Core unless their project is selected for development or trial readiness.
What this research studies
This grant supports a Pilot Core that collaborates with patients, families, doctors, and advocates to set key clinical priorities and identify projects with real potential to improve care. It will establish processes to recruit and fund promising pilot studies, ensure they meet NIH rules, and prepare projects for possible clinical trials. By leveraging the ACT Rare Diseases Consortium, it aims to accelerate translation from ideas to tangible improvements in diagnosis, treatment, and outcomes for affected children and their families.
Why it matters
Potential benefit: If successful, it could shorten the time to bring new diagnostics and treatments to patients with syndromic craniosynostosis.
How similar studies have gone: Other rare-disease consortia have shown that pilot funding and governance cores can catalyze translational progress, though success is variable.
Where this research is happening
-
Children's Hosp of Philadelphia
Philadelphia, United States Active
Researchers
- Principal investigator: Chai, Yang — Children's Hosp of Philadelphia
- Study coordinator: Chai, Yang
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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.