Status:

COMPLETED

Qualitative and Quantitative Study Which Aims to Determine the Specifics of the Announcement for the Diagnosis of Patients With Craniosynostosis and Their Parents to Better Support Them in Their Care

Lead Sponsor:

Assistance Publique - Hôpitaux de Paris

Collaborating Sponsors:

Université de Cergy Pontoise

Conditions:

Craniosynostosis

Eligibility:

All Genders

Brief Summary

The purposes of this study are: * to better understand the experience of the announcement for the diagnostic of craniosynostosis to patients and their families to improve the understanding of it and ...

Detailed Description

The supported hypothesis is that the diagnosis of craniosynostosis disturbs the initial family pattern. The different forms of the disease will have different repercussions on intra-family relationshi...

Eligibility Criteria

Inclusion

  • Inclusion Criteria :
  • Group 1 :
  • Parents of operated children with a clinical diagnosis of craniosynostosis
  • Group 2 :
  • Parents of newly diagnosed children for a craniosynostosis who will be operated
  • Children aged 15 who were operated for a craniosynostosis at least 10 years ago
  • Group 3 :
  • Parents of newly diagnosed children for a craniosynostosis who will be operated
  • Children aged 15 who were operated for a craniosynostosis at least 10 years ago
  • Exclusion Criteria:
  • nothing to declare

Exclusion

    Key Trial Info

    Start Date :

    October 1 2014

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ACTUAL

    End Date :

    July 1 2016

    Estimated Enrollment :

    574 Patients enrolled

    Trial Details

    Trial ID

    NCT02287805

    Start Date

    October 1 2014

    End Date

    July 1 2016

    Last Update

    August 26 2016

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    Centre de référence des dysostoses craniofaciales, Hôpital Necker Enfants Malades

    Paris, France, 75015