Clinical trial NCT06691048: Neurodevelopmental Disorder Diagnosis During Adulthood
Official title: Descriptive Study of Adult Patients Diagnosed Later with a Neurodevelopmental Disorder and Their Management
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Neurodevelopmental Disorders
Keywords: Neurodevelopmental Disorders
Late diagnosis
Adult
Lead sponsor: Hospices Civils de Lyon
Sponsor class: OTHER
First posted: 2024-11-15
Enrollment: 300
Sex: ALL
Minimum age (years): 18
Maximum age (years): 55
Standard ages: ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: RETROSPECTIVE
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.

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.


Eligibility criteria: 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

Primary outcomes:
measure: Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders
timeFrame: At the inclusion
measure: Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders
timeFrame: At the inclusion
measure: Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders
timeFrame: At the inclusion
Secondary outcomes:
Other outcomes:
Locations:
city: Bron
country: France
facility: Hospices Civils de Lyon
Study officials:
References: