IMAGINE ID: Research Publication

The IMAGINE ID team have published:   “Neuropsychiatric risk in children with intellectual disability of genetic origin: IMAGINE – The UK National Cohort Study” in the Lancet Psychiatry.

IMAGINE recruited nearly 3,000 people with a rare genetic condition that was associated with intellectual disability to take part in a research study. We asked parents of IMAGINE children to complete surveys about their child’s development, behaviour and mental health. This paper is a summary of the data collected from the initial phase of the project (IMAGINE 1: 2014-2019).

Professor Lucy Raymond from the University of Cambridge and CUH, the study’s senior author, said: “Thanks to all the families that have taken part in our research, we’ve been able to conduct the largest study to date of the impact of rare genetic variants associated with intellectual disability. What we’ve found is that these children are extremely likely to develop other neurodevelopmental or mental health conditions, which can present additional challenges both to them and their families.”

Professor David Skuse,  from Great Ormond Street Institute of Child Health, University College London, said: “We hope this work helps improve the targeting of assessments and interventions to support families at the earliest opportunity. We’d like to see better training for health care providers about the wider use and utility of genetic testing. We have identified its potential value in terms of predicting children’s mental health needs and this needs to be known to child mental health services, which are currently hugely limited in the UK.”

We’ve created a video summarising our findings. Please click on the picture below to see our video: 


We’ve also created some summaries of the IMAGINE ID findings for children and young people and for adults. Please click on the images below to see our summaries: 


Child summary Adult summary


To read more about the work that has been published click here