Study reveals family experiences with craniosynostosis diagnosis

NCT ID NCT02287805

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at how families are told their child has craniosynostosis, a condition where skull bones fuse too early. Researchers interviewed and surveyed 574 parents and children to understand the emotional impact and improve the diagnosis process. The goal is to make the announcement easier for families and tailor support to their needs.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • Centre de référence des dysostoses craniofaciales, Hôpital Necker Enfants Malades

    Paris, 75015, France

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Other studies related to the condition(s) this trial covers.