Award
National Institute of Dental and Craniofacial Research 5U54DE035976-02
Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot/Feasibility Governance Core
Recipient
Children's Hospital of Philadelphia, Philadelphia, PA, United States
Award Amount
$147,494.00
Ceiling
$147,494.00
Awarded
July 23, 2026
Identifier
5U54DE035976-02
This award funds the ACT Rare Diseases Consortium Pilot/Feasibility Governance Core to improve care for syndromic craniosynostosis by advancing pilot clinical projects towards clinical trial development through research, collaboration, and clinical translation.
Description
The Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium will advance high impact ideas through the Pilot/Feasibility Governance Core, focused on a mission to improve care for patients and families affected by syndromic craniosynostosis (CS). The Pilot Core will identify and overcome key barriers that impede clinical translation through establishing clinical priorities, recruiting and funding projects aligned with clinical priorities, vetting pilot projects for compliance with NIH policies, and developing clinical trial readiness. The expected deliverable is to launch and accelerate pilot clinical projects towards clinical trial development, ultimately improving diagnosis, management, and treatment of syndromic CS.