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Study seeks to improve how doctors share craniosynostosis news with families

NCT ID NCT02287805

First seen Apr 06, 2026 · Last updated Apr 29, 2026 · Updated 4 times

Summary

This study looked at how families experience being told their child has craniosynostosis, a condition where skull bones fuse too early. Researchers surveyed and interviewed 574 parents and older children to understand the emotional impact and care journey. The goal is to improve how this diagnosis is communicated and supported.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.