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

IMAGINE-ID is a national longitudinal cohort study that investigated the genetic causes of intellectual disability and how genetic changes affect children and young people's behaviour. Between 2014 and 2019, the study recruited participants aged between 4 and 19 years who met all four of the following criteria: i) having an intellectual disability; ii) having had a diagnostic microarray by an accredited Regional Genetic Centre, or 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 divided into two cohorts; the UCL sample included over 3,400 participants, and the Cardiff University sample included 520 participants. The Cardiff sample was followed up twice, at baseline between 2014 and 2018 and once more between 2020 and 2024. The UCL sample was followed up six times, at baseline between 2014 and 2019, and in 2020, 2021, 2022, 2023, and finally in 2024.

Study design
Cohort, Cohort - clinical

Number of participants at first data collection

3,402 (UCL Cohort)

520 (Cardiff University Cohort)

Age at first data collection

4 - 19 years (UCL Cohort)

4 - 19 years (Cardiff University Cohort)

Participant year of birth

Varied (UCL Cohort)

Varied (Cardiff University Cohort)

Participant sex
All

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

Sample features

Children and young people
Intellectual disability
People living with disability
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//

imagine-id.org/wp-content/uploads/2024/09/Protocol_2.pdf

Funders

Medical Research Council (MRC)

Medical Research Foundation

Ongoing?
No

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-completed questionnaire – online
  • Self-completed questionnaire – paper or computer assisted
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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    © 2024 Louise Arseneault

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