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NCT Number: NCT07527624

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

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.

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Key information

Conditions

Rare Diseases Disease Attributes Pathologic Processes Pathological Conditions, Signs and Symptoms

Age range

15 year–25 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Imagine Clinical Research

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

Location status: Recruiting

Location contact

Fatima MADANI ALAOUI, Medical Doctor

CONTACT

[email protected]

+33 (0)1 42 75 45 65

Who can participate

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Survey

Other

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

Primary outcomes

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

    Time frame: 18 Months

Secondary outcomes

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

    Time frame: 18 Months

  2. Use of tools to facilitate socio-professional inclusion

    Time frame: 18 Months

  3. Number of HR company representatives made aware of rare diseases

    Time frame: 18 Months

Study contacts

Contact information is provided by the study sponsor or research team.

Fatima clinical project manager, Medical doctor

CONTACT

[email protected]

+33 (0)1 42 75 45 65

Sponsors and collaborators

Lead sponsor

Imagine Institute

Other

Registry information

Acronym: ImagineLaSuite

Important dates

Study start
2024
Primary completion
2026
Study completion
2026
First posted
Apr 14, 2026
Registry last updated
Apr 14, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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