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RecruitingNCT06691048NeuroDevADUpdated Nov 15, 2024

Neurodevelopmental Disorder Diagnosis During Adulthood

An observational study in Neurodevelopmental Disorders, sponsored by Hospices Civils de Lyon. Recruiting at 1 site in France. Open to participants aged 18 Years to 55 Years. Per ClinicalTrials.gov, last updated 2024-11-15.

Sponsored by Hospices Civils de Lyon · Observational

From the registry’s dates

  • Started Jan 2024; still recruiting 2 years 9 months later.
Study type
Observational
Model
Cohort
Time perspective
Retrospective
Enrollment
300
Ages
18 Years to 55 Years
Sex
All
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Study summary

The prevalence of neurodevelopmental disorders (specific learning disorders: dyslexia, dysorthographia, dysgraphia and dyscalculia; communication disorders; developmental coordination disorders; attention deficit disorder with or without hyperactivity (ADHD); intellectual disability (ID) and autism spectrum disorders) in the general population is very high, representing over 15% of the paediatric population. Among this population, between 40% and 90% remain symptomatic into adulthood. In addition to the part of the population diagnosed in childhood and lost to the transition to adulthood, a significant part of this population remains unidentified and therefore untreated (up to 60%). It is in adulthood that the diagnosis of neurodevelopmental disorders must be identified as being at the origin of at least some of the cognitive dysfunctions observed: failure at school, difficulties in socio-professional integration... Thus, the lifelong care diagnostic pathway needs to be developed both from an organizational point of view and in terms of the scientific knowledge required to best organize a personalized health pathway for this population. The current challenge for this population is to offer a structured care pathway, from diagnosis to care and medico-social integration.

This project will provide comprehensive, homogeneous data for cohorts of patients requiring diagnostic advice and lifelong management of their disorders. Thesecomprehensive data will contribute to scientific publications on patient cohorts. At present, very few centers have complete, homogeneous data on late-diagnosis adults, so our project will have a scientific and academic impact in its own right.

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Conditions studied

  • Neurodevelopmental Disorders

Keywords

  • Neurodevelopmental Disorders
  • Late diagnosis
  • Adult
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In context

Neurodevelopmental Disorders

332 studies on the registry are indexed under Neurodevelopmental Disorders; 143 are open to participants now.

This study's planned enrollment of 300 is above the median of 200 across 124 observational studies indexed under Neurodevelopmental Disorders.

Browse Neurodevelopmental Disorders studies →

Lead sponsor

Hospices Civils de Lyon is the lead sponsor of 1,826 studies on the registry; 439 are open to participants now.

Counted across the registry records on this site, refreshed daily.

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Who can participate

Ages eligible
18 Years to 55 Years
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

300 subjects with one or more neurodevelopmental disorders of late diagnosis (i.e. diagnosed in adulthood), with access to a diagnostic opinion in the neurological hospital's functional neurology and epileptology department, between January 2022 and the end of 2024.

Inclusion criteria

  • Men or women aged 18 or over
  • Men or women under 55 years of age
  • Patients with a neurodevelopmental disorder according to the latest DSM5 criteria diagnosed after age 18
  • Patient with sufficient visual and auditory skills, oral and written language in French accessible to clinical and neuropsychological evaluation.

Exclusion criteria

Exclusion Criteria:

  • Patients with intellectual disabilities
  • Patients with serious addictive and/or psychiatric comorbidities
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Study design

Observational model
Cohort
Time perspective
Retrospective
Enrollment
300 participants (estimated)
Patient registry
No

Groups and cohorts

  • Adults with late diagnosis neurodevelopmental disorder

    Adults with late access to diagnosis of neurodevelopmental disorder

    Other: Description of an adult population diagnosed late with a neurodevelopmental disorder

Interventions

  • OtherDescription of an adult population diagnosed late with a neurodevelopmental disorder

    Clinical description during diagnostic interview

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What researchers measure

Primary outcomes

  1. Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders

    Social Data: Number of participants with specified social characteristics (e.g., employment status, living arrangements, education level).

    Time frame: At the inclusion

  2. Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders

    Environmental Data: Number of participants with specified environmental factors (e.g., access to care, socioeconomic status).

    Time frame: At the inclusion

  3. Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders

    Health Data: Number of participants with specific health characteristics (e.g., comorbid conditions, history of mental health support, medication use).

    Time frame: At the inclusion

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Study locations

1 of 1 sites recruiting
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References and documents

Individual participant data

Plan to share: No

No publications or documents are linked to this record.

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Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Nov 15, 2024, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
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Registry details

Key details

Study ID
NCT06691048
Lead sponsor
Hospices Civils de Lyon
Responsible party
Sponsor
First posted
Nov 15, 2024
Start date
Jan 8, 2024
Primary completion
May 15, 2024
Completion
Dec 1, 2024 (estimated)
Last update
Nov 15, 2024

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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No contact was published for this record. The registry link below has the sponsor’s details.

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