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

Aims
The Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment (IMAGINE ID) is a national longitudinal cohort study on the genetic causes of intellectual disability. The study aims to analyse how genetic changes affect children and young people's behaviour and to inform the care of families and children both now and in the future.

IMAGINE ID encompasses IMAGINE-1 (2015-2020) and IMAGINE-2 (2020-2024), and follows two cohorts, one based in University College London and one based in Cardiff University.

Institution
University College London (UCL), Cardiff University

Geographic coverage - Nations
England, Wales

Geographic coverage - Regions
Nationwide

Start date
2014

Catalogue record last updated
30/04/2025

Sample type
Cohort study

Sample details
Participants were between the ages of 4-19 years and had to meet the eligibility criteria. These criteria included: i) having an intellectual disability; ii) Has 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.

The UCL branch of the study follows 3,402 cohort members for longer while the Cardiff University branch follows 520 cohort members in greater depth.

Sample size at recruitment
Total sample: 3,922 3,402 (UCL sample)
520 (Cardiff University sample)

Sample size at most recent sweep
2,570 (UCL sample)
258 (Cardiff University sample)

Sex
All

Age at recruitment
4-19 years

Cohort year of birth
Varied

Website
imagine-id.org/

Related themes
Cognitive measures, Ethnicity and race, Migration and immigration, Parenting and family, Socioeconomic status and deprivation, Victimisation and life events