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
Countries
Year of first data collection
2014
Primary Institutions
Cardiff University
University College London (UCL)
Links
Profile paper DOI
Funders
Medical Research Council (MRC)
Medical Research Foundation
Ongoing?
No
Data types collected


Engagement
Keywords
Consortia and dataset groups