Neurodevelopmental Disorder Diagnosis During Adulthood
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Description of an adult population diagnosed late with a neurodevelopmental disorder.
- Who it may be relevant to
- Registry conditions: Neurodevelopmental Disorders. Basic parameters: 18 years — 55 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Descriptive Study of Adult Patients Diagnosed Later with a Neurodevelopmental Disorder and Their Management
Overview
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.
Interventions
- Other Description of an adult population diagnosed late with a neurodevelopmental disorder
Clinical description during diagnostic interview
Primary outcome measures
- Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders [Time frame: At the inclusion]
- Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders [Time frame: At the inclusion]
- Clinical Characteristics in Late-Diagnosed Adults with Neurodevelopmental Disorders [Time frame: At the inclusion]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
France · 1 center
- Hospices Civils de Lyon — Bron
Identifiers
NCT: NCT06691048 · 69HCL23_5397