Assessing the Genomic Impact on Neurodevelopment (IMAGINE ID), 2014-2019: Secure Access

<P>Abstract copyright UK Data Service and data collection copyright owner.</P><br><p>The <span style="font-style: italic;">Assessing the Genomic Impact on Neurodevelopment 2014-2019</span> (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?”.</p><p>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.</p><p>Further information about the study can be found on the&nbsp;<a href="http://www.imagine-id.org">IMAGINE ID</a> website.<br></p><br><B>Main Topics</B>:<BR><br><p>The dataset includes three datafiles:</p><ul><li>responses to the Development and Wellbeing Assessment (DAWBA) questionnaire<br></li><li>responses to the Adaptive Behaviour Assessment Schedule 3 (ABAS) questionnaire</li><li>demographics files, including gender and Index of Multiple Deprivation deciles<br></li></ul><p>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.</p>