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

Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability

This project will try to see what makes it hard for 15–25‑year‑olds with childhood-onset rare genetic conditions to access higher education, internships, or work.

Quick facts

• Study type: Observational
• Enrollment: 300 (estimated)
• Ages: 15 Years to 25 Years
• Sex: All
• Sponsor: Imagine Institute (Academic / other)
• Locations: 1 site (Paris, Île-de-France Region)
• Trial ID: NCT07527624 on ClinicalTrials.gov

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.

Who should consider this trial

Good fit: Young people aged 15–25 (born 1997–2007) with a childhood-onset rare genetic disease confirmed by genetic testing and followed at Necker’s listed reference centers, without intellectual disability (IQ ≥ 70), are the ideal candidates.

Not a fit: Patients with intellectual disability (IQ < 70), those not followed at Necker, or those outside the 15–25 age range are unlikely to be eligible or to benefit from this project.

Why it matters

Potential benefit: If successful, the findings could identify specific barriers and inform programs or policies to improve access to education and employment for affected young people.

How similar studies have performed: Previous survey-based work in rare disease populations has documented educational and employment barriers, but few studies have produced tested interventions to solve them.

Eligibility criteria

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 this trial is running

Paris, Île-de-France Region

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

Study contacts

• Study coordinator: Fatima clinical project manager, Medical doctor

Conditions Rare Diseases