Study aims to improve how doctors share craniosynostosis diagnosis with families
NCT ID NCT02287805
First seen Apr 06, 2026 · Last updated Jun 12, 2026 · Updated 15 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 improve the process. The goal is to make the diagnosis announcement clearer and more supportive for families.
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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.
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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Locations
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Centre de référence des dysostoses craniofaciales, Hôpital Necker Enfants Malades
Paris, 75015, France
Conditions
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