Actively Recruiting
Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
Led by Imagine Institute · Updated on 2026-04-14
300
Participants Needed
1
Research Sites
134 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Current age between 15 and 25 years, born between 1997 and 2007
- Diagnosis of a rare genetic disease confirmed by a genetic test, originating in childhood
- Followed at Necker in networks of disease reference centers for epilepsy without deficiency, genodermatosis, constitutional bone diseases, craniofacial malformations, or deafness
You will not qualify if you...
- Patient or parent opposes participation in the study
- Intellectual disability with IQ less than 70
- Patients with pathologies involving intellectual disability or clinical signs of intellectual disability
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Imagine Clinical Research
Paris, Île-de-France Region, France, 75015
Actively Recruiting
Research Team
F
Fatima clinical project manager, Medical doctor
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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