Neurodevelopmental Disorder Diagnosis During Adulthood

NCT06691048 | Recruiting

• 1 other identifier: 69HCL23_5397
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Neurodevelopmental Disorders

Keywords

Neurodevelopmental Disorders; Late diagnosis; Adult

Outcome Measures

Primary Outcomes (3)

• 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).

  At the inclusion

• 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).

  At the inclusion

• 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).

  At the inclusion

Study Arms (1)

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

Description of an adult population diagnosed late with a neurodevelopmental disorder OTHER

Clinical description during diagnostic interview

Adults with late diagnosis neurodevelopmental disorder

Eligibility Criteria

• Age: 18 Years - 55 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64)
• 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.

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• Hospices Civils de Lyon: lead

Study Sites (1)

Hospices Civils de Lyon

Bron, 69500, France

RECRUITING

MeSH Terms

Conditions

Neurodevelopmental Disorders

Condition Hierarchy (Ancestors)

Mental Disorders

Study Design

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

Study Record Dates

• First Submitted: May 17, 2024
• First Posted: November 15, 2024
• Study Start: January 8, 2024
• Primary Completion: May 15, 2024
• Study Completion: December 1, 2024
• Last Updated: November 15, 2024

Record last verified: 2024-11

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)