Infantile spasms are associated with a higher likelihood of neurodevelopmental conditions like autism, ADHD, language disorders and intellectual disability.
A better understanding of the impact of and effective interventions for developmental difficulties in early-onset epilepsy is a research priority identified by patients, carers, policymakers and healthcare professionals. Cognitive and behavioural difficulties result in many children requiring special education and residential care. Importantly, if pre-school children do not receive adequate early intervention, behavioural concerns often persist and worsen during children’s school-aged years. Early interventions have considerable scope for success compared to treating conditions when they have already emerged. By studying brain development before the onset of developmental difficulties, we can identify features that may predict future outcomes.
UKIST have been working alongside researchers from Kings College London to recruit families to participate in the BEE (brain development in early epilepsy) study which aims to identify neurodevelopmental outcomes in children with early onset focal epilepsy or infantile spasms. The children are assessed in their own home around the time of diagnosis and the followed up for 2 years.
UKIST has now given £10k of research funding to the project to extend it beyond the 2 year timepoint, running focus groups to help identify priorities and design the next phase to follow children into their preschool years. Dr Dolapo Adegboye will conduct additional analysis to compare the BEE study infant data to other studies. There is a plan to partner with Vcreate Neuro (a secure platform for video sharing) to improve remote assessment of development and behaviour. This is a unique opportunity to chart development of these children from early in their lives on a larger scale. The findings will be used to support a larger grant application in 2026 to continue the project into the preschool phase.
