Advancing Craniosynostosis Care Through a Coordinated Administrative Core
Official title: Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Administrative Core
Funded at Children's Hosp of Philadelphia · NIH-11397537 · Data updated 2026-11-12
A national consortium of craniofacial centers and a patient data network is coordinating administrative and regulatory activities to support research on five craniosynostosis syndromes in children.
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) | $327,921 |
| NIH project number | 5U54DE035976-02 |
| Project ID | NIH-11397537 on NIH RePORTER |
Who could benefit from this research
✓Could help
Families and children affected by Apert, Pfeiffer, Crouzon, Muenke, or Saethre-Chotzen syndromes who may participate in consortium activities or related studies through RDCRN sites.
✕Less likely to help
This core is primarily administrative; individual patients may not directly benefit from participation in core activities alone, but may benefit from improved research infrastructure in the long term.
What this research studies
This grant funds an Administrative Core to unite four craniofacial centers and the PEDSnet data network, streamline operations, and ensure compliance across sites studying Apert, Pfeiffer, Crouzon, Muenke, and Saethre-Chotzen syndromes. It focuses on governance, communication, data management, and collaboration with the RDCRN to enable multi-site studies. The core also partners with patient groups to engage families and supports other cores that pilot new ideas and career development within the consortium. By establishing standardized procedures and oversight, the ACT Rare Diseases Consortium aims to accelerate research while protecting participants and their data. The work is centered on improving coordination and infrastructure to ultimately benefit affected children and their families.
Why it matters
Potential benefit: Improved coordination and access to high-quality data could speed up future research and clinical advances for children with craniosynostosis.
How similar studies have gone: Previous RDCRN and consortium-based administrative cores have successfully streamlined multi-site research and facilitated patient-centered studies.
Where this research is happening
-
Children's Hosp of Philadelphia
Philadelphia, United States Active
Researchers
- Principal investigator: Liao, Eric Chien-Wei — Children's Hosp of Philadelphia
- Study coordinator: Liao, Eric Chien-Wei
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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.