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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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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Adults with late diagnosis neurodevelopmental disorder | Adults with late access to diagnosis of neurodevelopmental disorder |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Description of an adult population diagnosed late with a neurodevelopmental disorder | Other | Clinical description during diagnostic interview |
|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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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.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hospices Civils de Lyon | Recruiting | Bron | 69500 | France |
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| ID | Term |
|---|---|
| D065886 | Neurodevelopmental Disorders |
| ID | Term |
|---|---|
| D001523 | Mental Disorders |
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