Families of Children with Syndromic Craniosynostosis – We Need You!
We’re helping researchers with the ACT Clinical Project connect with families whose children have one of the five syndromic craniosynostosis syndromes (Apert, Crouzon, Pfeiffer, Saethre-Chotzen, or Muenke).
This study does NOT test new treatments.
No changes will be made to the care your child already receives.
Researchers will only collect information during your child’s regular clinic visits.
Caregivers will be compensated for their time.
Why Your Participation Matters
Every child’s journey helps move the medical community one step closer to understanding syndromic craniosynostosis. Research like this has already led to:
Better guidelines for early diagnosis
Improved understanding of growth, development, and surgical outcomes
Data that helps surgeons and specialists personalize treatment plans
Stronger support resources for families and caregivers
By sharing information you’re already giving at appointments, you’re helping build knowledge that will support future families facing these diagnoses.
Want to Learn More or See If You Qualify?
Send us a message or comment below, and we’ll connect you with the ACT Clinical Project team.
Together, we can advance understanding, improve care, and support the craniosynostosis community.
