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A Family-Genetic Study of Autism and Fragile X Syndrome
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Sample details

The study aims to examine the skill of communication repair (i.e., the ability to respond effectively to a request for clarification of an unclear message) across three neurodevelopmental disabilities in which language skills are impaired. Participants include children aged 3 to 15 years with fragile X syndrome, Autism Spectrum Disorder, Down syndrome and controls with typical development. Participants were recruited from parent groups, childcare centres, schools, research registries, and clinics in the eastern, southeastern, and midwestern United States of America. Over 200 participants completed a baseline assessment. Participants are assessed annually up to three times.

Study design
Cohort, Cohort - clinical

Number of participants at first data collection

225 (participants)

Age at first data collection

3 - 15 years (participants)

Participant year of birth

Varied (participants)

Participant sex
All

Representative sample at baseline?
No

Sample features

Autism Spectrum Disorder (ASD)
Children and young people
Control participants
Developmental disability
Parents of children with autism
Dataset details

Country

United States of America

Year of first data collection

2012

Primary Institutions

Northwestern University (NU)

Links

fragilex.org/opportunities-for-families/family-genetic-study-northwestern/

reporter.nih.gov/project-details/10999012

nda.nih.gov/edit_collection.html

Funders

National Institute of Mental Health (NIMH)

Ongoing?
Yes

Data types collected

mentalHealthData
Quantitative data collection
  • Audio or visual recordings (e.g. of child behaviour, facial expressions)
  • Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
  • Interview – face-to-face
Qualitative data collection
  • None
Neuroimaging data collection
  • None
Linked or secondary data
  • None
Features

Engagement

  • None
  • Keywords

    Behaviour
    Disability
    Genetic factors
    Human development
    Language development
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