Screening for Neurodevelopmental Disorders in Siblings of Children With Autism Diagnosed in Tertiary Centers

Study Overview
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Brief Summary
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In this study, a selective and multi-stages screening for neurodevelopmental disorders (NDD) in siblings of children with a confirmed ASD is done. The main aims are to estimate the prevalence of NDD among siblings and to evaluate the feasibility and acceptability of a standardized screening procedure.

Detailed Description
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Although NDD are frequent among siblings of children with ASD, their developmental screening is not yet sufficiently organized in routine practice. The needs and the characteristics of these siblings have yet to be better understood in order to define their developmental surveillance.

Official Title
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Screening for Neurodevelopmental Disorders in Siblings of Children With Autism Diagnosed in Tertiary Centers

Conditions
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Autism Spectrum Disorder, Siblings, Neurodevelopmental Disorders

Intervention / Treatment
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* Diagnostic Test: Step 1 - Screening ; Step 2 - Clinical interview


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Step 1: Brothers or sisters (including stepsisters and brothers); aged between 2 and 16 years; living in Occitanie; informed and express consent of parents ; affiliated to social security. Step 2: step 1 positive screening or parental concerns for child's development ; parental signed informed consent. Exclusion Criteria: Parents (or child) refusal to participate; adopted brother or sister. Do not speak French

Ages Eligible for Study
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Minimum Age: 2 Years
Maximum Age: 16 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| neurodevelopmental disorders<br>Step 1 - Screening: the targeted sample is the siblings of the autistic children, these siblings being at risk of neurodevelopmental disorders. Step 2 - Clinical interview: All the children with a positive screening. | Diagnostic Test: Step 1 - Screening ; Step 2 - Clinical interview<br>* Step 1: screening is performed by online parental questionnaires (SRS-2, Identidys scale, DCDQ, parental concerns questionnaire ) via a web platform. Parents and registered doctors will be informed by mail in case of negative screening; In case of positive screening, they will be called by phone in order to give them the results and to invite them for a clinical and semi-structured interview. Step 2: The semi-structured interview will be performed by a psychologist specialized in NDD in order to clinically confirm the results of the screening and refer the child to care and interventions, by mail to the registered doctor. Around 12 months after this interview, parents will be called by phone to collect a description of the referral and their satisfaction about the screening process.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Percentage of family participation | Families' participation rate and, among participants, number of children with a NDD diagnosis at the end of the screening study. | 12 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Sensibility, specificity, positive predictive values (PPV) and negative predictive values (NPV) of the screening procedure |  | 12 months | 
| Percentage of satisfied parents | Estimate the level of satisfaction of parents who participated in the screening with the parental satisfaction score via the Visual Analog Scale (VAS). VAS is a scale from 0 (not at all satisfied) to 100 (very satisfied) | 12 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Siblings, Screening, Autism Spectrum Disorder, Neurodevelopmental Disorders