Early-life predictors of primary school learning outcomes in children with complex special educational needs: A prospective longitudinal study of tube

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Tuberous sclerosis complex (TSC) is a complex rare genetic condition characterised by a range of physical and behavioural difficulties, which require specialist multidisciplinary support. While many children with TSC can attend school and participate in activities with some assistance, the manifestations of TSC will affect each child differently. It is challenging to predict how each child will develop and therefore how best to support them at school. This PhD will further our understanding of educational experiences and outcomes of children with TSC in primary school by working with a longitudinal cohort of TSC, theEarly Development in Tuberous Sclerosis (EDiTS) Study, and the Tuberous Sclerosis Association (TSA), the UK charity for families affected by TSC. The student will firstcharacterise associations between cognitive function, 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. Secondly, multiple measures including standardised questionnaires, interviews, focus groups and online experiments will be used to describe and measure educational outcomes, learning profiles and specialist provision in primary school for TSC. Thirdly, early-life predictors of learning outcomes in TSC will be identified using longitudinal data. During an internship with the TSA, the student will be supported to deliver accredited training modules to educational professionals and in providing support to families. Accessible summaries of findings will be co-produced with members of the TSC community and disseminated through a dedicated education event. Knowledge gained will extend to other populations ofchildren with complex special educational needs and disabilities, ensuring broader impact. Evidence-based research is needed to inform intervention and educational practices to provide the right educational opportunities for children with complex neurogenetic conditions, in order to improve longer term outcomes and quality of life.