Neurodevelopmental Disorder Diagnosis During Adulthood (NeuroDevAD)

Descriptive Study of Adult Patients Diagnosed Later with a Neurodevelopmental Disorder and Their Management

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.

Study Overview

• Status: Recruiting
• Conditions: Neurodevelopmental Disorders
• Intervention / Treatment: Other: Description of an adult population diagnosed late with a neurodevelopmental disorder

• Study Type: Observational
• Enrollment (Estimated): 300

Contacts and Locations

Study Locations

• France
  • Bron, France, 69500
    • Recruiting
    • Hospices Civils de Lyon
    • Contact: Aurélie RICHARD-MORNAS, MD; Phone Number: +33 4 72 35 70 44; Email: aurelie.richard-mornas@chu-lyon.fr

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult
• 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.

Description

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:

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

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
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; Clinical description during diagnostic interview

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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

Collaborators and Investigators

• Sponsor: Hospices Civils de Lyon

Study record dates

Study Major Dates

• Study Start (Actual): January 8, 2024
• Primary Completion (Actual): May 15, 2024
• Study Completion (Estimated): December 1, 2024

Study Registration Dates

• First Submitted: May 17, 2024
• First Submitted That Met QC Criteria: November 14, 2024
• First Posted (Actual): November 15, 2024

Study Record Updates

• Last Update Posted (Actual): November 15, 2024
• Last Update Submitted That Met QC Criteria: November 14, 2024
• Last Verified: November 1, 2024

More Information

Terms related to this study

• Keywords: Adult; Neurodevelopmental Disorders; Late diagnosis
• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders
• Other Study ID Numbers: 69HCL23_5397

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No