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Study reveals family experiences with craniosynostosis diagnosis

NCT ID NCT02287805

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris Source: ClinicalTrials.gov ↗

What the study statuses mean

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Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at how families are told their child has craniosynostosis, a condition where skull bones fuse too early. Researchers interviewed and surveyed 574 parents and children to understand the emotional impact and improve the diagnosis process. The goal is to make the announcement easier for families and tailor support to their needs.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

574 people

The number who actually took part.

Start date

Oct 2014

Finished

Jul 2016

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

children with craniosynostosis who are followed by the Reference Center "Dysostoses craniofaciales" and their parents.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

craniosynostosis disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Craniosynostosis

Contacts and locations

Locations

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

    Paris, 75015, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.