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

NCT07527624 | Recruiting

• 1 other identifier: HJ2023Imagine La Suite
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

Brief Summary

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

Rare Diseases

Outcome Measures

Primary Outcomes (1)

• Entry into a training program, validation of a diploma, obtaining a 1st stable job

  18 Months

Secondary Outcomes (3)

• Characterize the pathology components of the care pathway, barriers/ strengths to inclusion

  18 Months

• Use of tools to facilitate socio-professional inclusion

  18 Months

• Number of HR company representatives made aware of rare diseases

  18 Months

Interventions

survey OTHER

Patients take part in a survey, completing a form in less than 30 minutes

Eligibility Criteria

• Age: 15 Years - 25 Years
• Sex: all
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Patients currently aged 15-25 born between 1997 and 2007 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 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.

Sponsors & Collaborators

• Imagine Institute: lead

Study Sites (1)

Imagine Clinical Research

Paris, Île-de-France Region, 75015, France

RECRUITING

MeSH Terms

Conditions

Rare Diseases

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Central Study Contacts

Fatima clinical project manager, Medical doctor

CONTACT

+33 (0)1 42 75 45 65; recherche-clinique@institutimagine.org

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 7, 2026
• First Posted: April 14, 2026
• Study Start: January 8, 2024
• Primary Completion (Estimated): June 8, 2026
• Study Completion (Estimated): August 8, 2026
• Last Updated: April 14, 2026

Record last verified: 2026-04

Locations

FR (1)