Goals & Mission
Overall Goals
ACT will organize and collect multi-center data to enhance our understanding of syndromic craniosynostosis (CS) natural history and inform treatment approaches of these rare conditions.
Clinical Project 1 Goals
Clinical Project 1 (CP1) will perform a prospective longitudinal observational natural history study for syndromic CS.
Clinical Project 2 Goals
Clinical Project 2 will perform prospective longitudinal observation studies investigating surgical treatment outcomes, both for the initial cranial vault remodeling operation and subsequent midface surgeries.
Pilot/Feasibility Governance Core Goals
The Pilot Core will recruit and enable future innovative single or multi-site pilot studies aimed at advancing the diagnosis, clinical trial readiness, management, and/or treatment of syndromic CS.
Career Enhancement Core Goals
The Career Enhancement Core will identify and nurture early career healthcare professionals to successful craniofacial research investigation.
Mission
The Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium's mission is significantly improving the health of children with syndromic craniosynostosis though establishing best clinical practices, patient advocacy, novel pilot studies, and training the next generation of craniofacial clinicians. ACT will assemble the infrastructure and personnel to carry out the prospective multi-site studies that will yield the highest-level clinical evidence to inform future comparative studies and clinical treatment standards for syndromic CS.