Thesis Title: Early-life predictors of primary school learning outcomes in children with complex special educational needs: A prospective longitudinal study of tuberous sclerosis complex
Abstract: Tuberous sclerosis complex (TSC) is a lifelong rare neurogenetic condition characterised by a range of physical and behavioural difficulties, which require specialist multidisciplinary support. Cognitive and behavioural problems are of great concern to individuals and their families, and are major determinants of quality of life. While many children with TSC can attend school and participate in activities with some assistance, the manifestations of TSC will affect each child differently. Identifying predictors of learning outcomes will inform early intervention and educational practice to improve longer-term outcomes. One candidate mechanism is executive function (EF), a set of higher-order processes that underpin goal-directed activity and predict school readiness, academic skills, behavioural problems and quality of life. This study aims to further our understanding of educational experiences and outcomes of children with TSC in primary school by working with a longitudinal cohort of TSC, the Early Development in Tuberous Sclerosis (EDiTS) Study (www.edits-study.org), and the Tuberous Sclerosis Association (TSA), the UK charity for families affected by TSC (www.tuberous-sclerosis.org). This project includes three studies: 1. To characterise associations between EF (measured using a specially designed touchscreen app and behavioural tasks), school readiness and neurodevelopmental conditions in the preschool years using existing data from the EDiTS Study, which has been following children with TSC from birth. 2. Take a multi-methods approach to characterising primary school outcomes and experiences in TSC including interviews with children, families, and education staff using online surveys and online experimental measures of learning, cognitive ability and executive functioning. 3. Identify early-life predictors of learning outcomes in TSC, by combining data from Study 1 and 2 in a longitudinal design.
First Supervisor: Dr. Charlotte Tye