An observational study in Craniosynostosis, sponsored by Assistance Publique - Hôpitaux de Paris. Completed at 1 site in France. Per ClinicalTrials.gov, last updated 2026-04-06.
Sponsored by Assistance Publique - Hôpitaux de Paris · Observational
The purposes of this study are:
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 relationships.
The quality of the announcement done by the doctor influences the way how the subjects (parents and patients themselves) appropriate and incorporate it at short, medium and long term.
This research will contribute to the knowledge of this rare disease by different scientific communities: social sciences, medicine and neuropsychology. The originality of this research lies in interdisciplinary teams involved and the cross looks between professional and associative fields.
To better understand the impact of congenital malformations and specifically those related to craniosynostosis, the experiences of children and their families at short, medium and long term, the research will take place in the center of reference "Dysostoses craniofacial", Pediatric Neurosurgery Service at the Necker Hospital in Paris.
Prior to fieldwork, a thorough literature search will be conducted on issues related to our subject: the announcement, psychological, identity, family and social impacts, as well as the specifics of the disease and its manifestations.
The fieldwork will be included in a longitudinal approach which will be located at the intersection of quantitative and qualitative methods.
51 studies on the registry are indexed under Craniosynostoses; 14 are open to participants now.
This study's enrollment of 574 is above the median of 43 across 26 observational studies indexed under Craniosynostoses.
Browse Craniosynostoses studies →Assistance Publique - Hôpitaux de Paris is the lead sponsor of 3,592 studies on the registry; 1,033 are open to participants now.
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children with craniosynostosis who are followed by the Reference Center "Dysostoses craniofaciales" and their parents.
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Group 1 :
Parents of operated children with a clinical diagnosis of craniosynostosis
Group 2 :
Group 3 :
Exclusion Criteria:
parents of 300 patients with craniosynostosis diagnostic
Other: quantitative survey
* parents of 12 newly diagnosed patients, they will be seen 3 times (after the diagnosis, 3 months after surgery, 1 year after surgery * 12 patients aged over 15 years, operated more than 10 years before
Other: qualitative survey
* 100 parents of patients 1 year after surgery * 100 parents of patients, 5 years after the operation * 100 patients aged over 15 years and operated over 10 years ago
Other: quantitative survey
measure by questionnaire the conditions and experiences of the announcement concerning craniosynostosis (simple or complex)
Analysis of the questionnaires will permit us to learn more about the conditions and experiences of the announcement concerning different profiles families whose experience has been received differently depending on the type of craniosynostosis (simple or complex), the medical history or sociodemographic characteristics.
Time frame: 5 months
measure by interview the conditions and experiences of the announcement concerning craniosynostosis (simple or complex) interview
In a longitudinal perspective, we will develop interview guides. For conducting interviews, we will use the life story method. The interest of the life story is that it provides a method to study the modes of appropriation of the announcement and the way in which subjects incorporate it into their life history.
Time frame: 16 months
measure by an other questionnaire the conditions and experiences of the announcement concerning craniosynostosis (simple or complex)
From the results of all the interviews (from qualitative survey) and the analysis of questionnaires from the quantitative survey 1, we will develop questionnaires for themes and issues that have emerged from those analyses (accompanying the announcement of genetic mutation in the family, aesthetics, education ...). It will then develop targeted questionnaires, based on the analysis of interviews and questionnaires from the quantitative survey. The goal will be a deepening of themes.
Time frame: 6 months
The record gives a start of Oct 2014, a primary completion of Jan 2016 and a completion of Jul 2016. It does not say whether these dates are actual or estimated.
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This study is completed, as verified in Mar 2026. You cannot join it, but the record below documents what was studied.
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