Study aims to improve how doctors share craniosynostosis diagnosis with families

NCT ID NCT02287805

First seen Apr 06, 2026 · Last updated May 15, 2026 · Updated 7 times

Summary

This study looked at how families experience the moment they learn their child has craniosynostosis, a condition where skull bones fuse too early. Researchers surveyed and interviewed 574 parents and older children to understand their feelings and needs. The goal is to improve how doctors deliver this news and support families through treatment.

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Contacts and locations

Locations

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

    Paris, 75015, France

Conditions

Explore the condition pages connected to this study.