Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

Rare disease survey aims to unlock job barriers for young adults

NCT ID NCT07527624

Knowledge-focused Sponsor: Imagine Institute Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study surveys 300 young adults aged 15-25 with rare genetic diseases to understand the difficulties they face in getting education, internships, and stable jobs. Participants fill out a short form about their experiences. The goal is to find what helps or hinders their path to work and training, so better support can be offered.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could identify key barriers and effective tools to help young people with rare genetic disabilities find training and jobs.
What could go wrong
This is an observational survey, not a treatment trial, so it won't directly change health outcomes. Results may not apply to all rare diseases.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 300 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2024

Expected to finish

Aug 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

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;

Ages

15 to 25 years

Sex

Anyone

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Rare diseases are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Rare diseases

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Imagine Clinical Research

    RECRUITING

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

More trials for these conditions

Other studies related to the condition(s) this trial covers.