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Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment (IMAGINE ID)
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Sample details

Participants were between the ages of 4-19, living in England or Wales, and had to meet the eligibility criteria. These criteria included: i) having an intellectual disability; ii) having had a diagnostic microarray by an accredited Regional Genetic Centre, or has had next-generation sequencing; iii) having at least one Copy Number Variant or Single Nucleotide Variant reported as pathogenic; iv) having a legal guardian available to consent and provide detailed medical and behavioural history. Participants were either in the Cardiff University Sample with longer and more detailed in-person interviews involving the whole family, or in the University College London Sample with shorter and more frequent online interviews.

Study design
Cohort, Cohort - clinical

Number of participants at first data collection

3,402 (UCL Sample)

520 (Cardiff University Sample)

Age at first data collection

4 - 19 years (participants)

Participant year of birth

Varied (participants)

Participant sex
All

Representative sample at baseline?
The UK national population based on index of multiple deprivation quintiles

Sample features

Children and young people
Dataset details
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Countries

England, United Kingdom of Great Britain and Northern Ireland, Wales

Year of first data collection

2014

Primary Institutions

Cardiff University

University College London (UCL)

Links

ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-department/cenb-clinical-29

cataloguementalhealth.ac.uk//

Funders

Medical Research Council (MRC)

Medical Research Foundation

Ongoing?
Yes

Data types collected

mentalHealthData
dataLinkage
Quantitative data collection
  • Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
  • Interview – face-to-face
  • Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
  • Secondary data
  • Self-report questionnaire – online
Qualitative data collection
  • None
Neuroimaging data collection
  • None
Linked or secondary data
  • Education data
  • Healthcare data
Features

Engagement

  • Community engagement
  • Keywords

    Behaviour
    Biomarkers
    Childhood
    Cognitive assessments
    Genetics
    Learning disabilities
    Life outcomes
    Mental health
    Neurodevelopment
    Physical health
    Rare chromosome
    Risk factors

    Consortia and dataset groups

    Catalogue of Mental Health Measures
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