Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
Recruiting now
Conditions studied: Rare Diseases
In brief
Rare diseases are often synonymous with difficulties for sufferers, whether physical, mental or social. Patients suffering from rare diseases face specific problems, such as the long wait for a diagnosis, the geographical distance between the rare disease reference center and home, and the isolation created by this very disabling disease... Children suffering from rare genetic diseases have difficulty accessing higher education, but above all in finding an internship or work-study placement, due to the rarity of their disability. The aim of this study, entitled "Imagine La Suite", is to assess the difficulties encountered by young people with rare genetic diseases and disabilities in their search for vocational and university training or employment.
Key facts
- Study ID
- NCT07527624
- Run by
- Imagine Institute
- People needed
- 300
- Starts
- 2024-01-08
- Expected to finish
- 2026-08-08
- Last updated by the study team
- 2026-04-14
Who can join
Age: 15 and older, up to 25. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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;
You may not qualify if…
- 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 is running
- Imagine Clinical Research — Paris, Île-de-France Region, France (enrolling)
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.