Socio‑professional inclusion for young people (15–25) with childhood-onset rare genetic disabilities

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This is an observational survey-based project recruiting 15–25‑year‑olds with childhood-onset rare genetic conditions who are followed at Necker’s reference centers. Participants complete questionnaires about their experiences seeking vocational training, university places, internships, or employment. The study excludes individuals with intellectual disability (IQ < 70) and focuses on five reference networks: epilepsy without deficiency, genodermatoses, constitutional bone diseases, craniofacial malformations, and deafness. Data will be used to describe barriers and facilitators to socio‑professional inclusion in this population.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Current age 15-25 years born between 1997 and 2007
* Rare genetic disease confirmed by a genetic test, originating in childhood and followed at Necker in the networks of the following disease reference centers:

  * epilepsy without deficiency ;
  * genodermatosis ;
  * constitutional bone diseases ;
  * craniofacial malformations;
  * deafness;

Exclusion Criteria:

* Patient or parent's opposition to study participation
* Patient with intellectual disability (IQ \< 70)
* Patients with pathologies involving intellectual disability and patients with a clinical sign of intellectual disability.

Where it's running

• Imagine Clinical Research
  Paris, Île-de-France Region, France Recruiting

Study contacts

• Study coordinator: Fatima clinical project manager, Medical doctor
• Email: recherche-clinique@institutimagine.org
• Phone: +33 (0)1 42 75 45 65

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.