Study title

Abstract copyright UK Data Service and data collection copyright owner.

The Assessing the Genomic Impact on Neurodevelopment 2014-2019 (IMAGINE ID) study enrolled children and young people with developmental delay, learning difficulties or intellectual disability with a diagnosed genetic condition. IMAGINE ID aimed to answer a question parents often ask when their child has a genetic condition: “So what does this mean for my child?”.

The genotype-first study has to date recruited 3,402 individuals from NHS Regional Genetics Clinics throughout the UK, whose intellectual disability (ID) is associated with either a pathogenic Copy Number Variant (CNV-75.9 per cent or Single Nucleotide Variant (SNV-23.6 per cent) or both (0.5 per cent). 84 per cent of consented families provided standardised assessments, including measures of their child’s mental health and functional adaptation.

Further information about the study can be found on the IMAGINE ID website.

The dataset includes three datafiles:

• responses to the Development and Wellbeing Assessment (DAWBA) questionnaire
  
• responses to the Adaptive Behaviour Assessment Schedule 3 (ABAS) questionnaire
• demographics files, including gender and Index of Multiple Deprivation deciles
  

The two standardised assessments were designed as online questionnaires, to be completed by the parent/guardian of the affected child. However if the parent/guardian was unable to complete the questionnaires online, they were completed by telephone with one of the study team. When necessary the study team also offered a home visit to families to complete these assessments in person.