An observational study in Neurodevelopmental Disorders, sponsored by Hospices Civils de Lyon. Recruiting at 1 site in France. Open to participants aged 18 Years to 55 Years. Per ClinicalTrials.gov, last updated 2024-11-15.
Sponsored by Hospices Civils de Lyon · Observational
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.
332 studies on the registry are indexed under Neurodevelopmental Disorders; 143 are open to participants now.
This study's planned enrollment of 300 is above the median of 200 across 124 observational studies indexed under Neurodevelopmental Disorders.
Browse Neurodevelopmental Disorders studies →Hospices Civils de Lyon is the lead sponsor of 1,826 studies on the registry; 439 are open to participants now.
Counted across the registry records on this site, refreshed daily.
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.
Exclusion Criteria:
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
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).
Time frame: 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).
Time frame: 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).
Time frame: At the inclusion
Plan to share: No
No publications or documents are linked to this record.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
No contact was published for this record. The registry link below has the sponsor’s details.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Hospices Civils de Lyon