Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: survey.
- Who it may be relevant to
- Registry conditions: Rare Diseases. Basic parameters: 15 years — 25 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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.
Interventions
- Other survey
Patients take part in a survey, completing a form in less than 30 minutes
Primary outcome measures
- Entry into a training program, validation of a diploma, obtaining a 1st stable job [Time frame: 18 Months]
Secondary outcome measures (3)
- Characterize the pathology components of the care pathway, barriers/ strengths to inclusion [Time frame: 18 Months]
- Use of tools to facilitate socio-professional inclusion [Time frame: 18 Months]
- Number of HR company representatives made aware of rare diseases [Time frame: 18 Months]
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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Study design
- Observational model
- Other
Study locations
France · 1 center
- Imagine Clinical Research — Paris
Identifiers
NCT: NCT07527624 · HJ2023Imagine La Suite