Network Of Clinical Research Studies On Craniosynostosis, Skull Malformations With Premature Fusion Of Skull Bones

This study is looking for people to take part, including children. We are mainly interested in children who have been diagnosed with coronal craniosynostosis. We also want to include their close family members, like their parents and siblings, who don't have the condition.

We're also looking for control participants, who are people without craniosynostosis. These might include individuals who have had skull surgery for reasons like an injury, but not for craniosynostosis itself or other bone diseases.

Anyone of any racial or ethnic background can take part if they meet the criteria. The study specifically excludes certain vulnerable adults, like those with intellectual impairments or prisoners, but children with craniosynostosis are included. If someone meets the criteria but decides not to participate, that's also an exclusion.

If you decide to take part, you might be asked to provide some samples. This could include a buccal swab, which is a simple and painless way to collect cells from inside your cheek. You might also be asked for a blood sample, and in some cases, a small skin biopsy, which is a tiny piece of skin taken for study. If a child is already having surgery for craniosynostosis, we might also ask to use a small piece of tissue that would normally be discarded during the operation. We might also collect information from pre-existing CT scans of the skull. The study is a one-off collection of information and samples, and there are no ongoing visits or medications involved. The total duration of participation for an individual would be limited to the time taken for these collections.