Rare DiseasesImagineLaSuiteNCT07527624
Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
An observational study of Rare Diseases, run by Imagine Institute at 1 site in France.
Trial 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… Read more about this study
- Who is it for?
- Ages 15 to 25 years
- Conditions the study is for
- Rare Diseases
- What is being tested?
- survey
- How many people
- 300 participants
- Where
- 1 siteFrance
- Study dates
- 8 Jan 2024to 8 Aug 2026
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 15 to 25 years
- All sexes
- Child, Adult
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;
Who may be able to join
- 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;
Who cannot join
- 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.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Fatima clinical project manager, Medical doctor contact
France1 site, 1 recruiting
- Recruiting
Imagine Clinical Research
Paris, Île-de-France Region, 75015
Fatima MADANI ALAOUI, Medical Doctor, +33 (0)1 42 75 45 65, recherche-clinique@institutimagine.org
About this study
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
- Being tested
- survey
- Medical subject headings
- Rare Diseases
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
surveyOther
Patients take part in a survey, completing a form in less than 30 minutes
What is being measured
The primary outcome is the main question the study is designed to answer.
Entry into a training program, validation of a diploma, obtaining a 1st stable job
Measured: 18 Months
Secondary outcomes (3)
Characterize the pathology components of the care pathway, barriers/ strengths to inclusion
Measured: 18 Months
Use of tools to facilitate socio-professional inclusion
Measured: 18 Months
Number of HR company representatives made aware of rare diseases
Measured: 18 Months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted14 Apr 2026
- Study start8 Jan 2024
- Primary completion8 Jun 2026 (estimated)
- Study completion8 Aug 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Rare DiseasesStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 300 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Imagine Institute
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07527624
- Sponsor's protocol ID
- HJ2023Imagine La Suite
- Acronym
- ImagineLaSuite
- Status last verified
- Apr 2026
- First submitted
- 7 Apr 2026
- Last updated
- 14 Apr 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 14 Apr 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Evaluation of Socio-professional Inclusion for Young Adults Aged 15-25 Living With a Rare Genetic Disability
- ClinicalTrials.gov ID
- NCT07527624
- Acronym / sponsor ID
- ImagineLaSuite / HJ2023Imagine La Suite
- Conditions
- Rare Diseases
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 300 participants (estimated)
- Lead sponsor
- Imagine InstituteUniversity, hospital or other
- Study start
- 8 Jan 2024 (actual)
- Primary completion
- 8 Jun 2026 (estimated)
- Study completion
- 8 Aug 2026 (estimated)
- First posted
- 14 Apr 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Other
- Time perspective
- Prospective
Who may qualify
- Ages
- 15 to 25 years
- Sex
- All
- Age groups
- Child, Adult
- 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;
Key inclusion criteria (7 listed)
- 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:
Key exclusion criteria (3 listed)
- 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.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| surveyPatients take part in a survey, completing a form in less than 30 minutes | Other | – |
Primary outcome
Entry into a training program, validation of a diploma, obtaining a 1st stable job
Time frame: 18 Months
3 secondary outcomes
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 14 Apr 2026.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Fatima clinical project manager, Medical doctor contact
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Rare Diseases, run by Imagine Institute at 1 site in France.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 7 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 14 Apr 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in France. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Fatima clinical project manager, Medical doctor (+33 (0)1 42 75 45 65, recherche-clinique@institutimagine.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Entry into a training program, validation of a diploma, obtaining a 1st stable job (time frame: 18 Months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 14 Apr 2026.