About

Pre-School Aims

The aim of this study is to follow the development of babies and young children with Tuberous Sclerosis to better understand the condition and how it affects development. As the infant phase comes to a close, we are now continuing the study to assess development and behaviour in preschool children aged 3-5 years old with TSC and typically developing children, to understand changes over early childhood and how these predict outcomes (e.g. social communication, attention and cognitive ability).

What has been done?

This phase included a comprehensive range of assessments that were aimed at understanding the developmental trajectories of children with TSC beyond infancy compared to typically developing children. These assessments included:

• Parent-report questionnaires and interviews about the child's development and covered various aspects of behaviour social skills, attention and developmental ability.

• Home Based Assessments which included play-based tasks designed to assess various developmental domains such as cognitive, motor and social skills.

• Sleep diaries to track the child’s sleep patterns and behaviour during sleep.

A total of 68 families were visited – 38 families with TSC and 30 families with typically developing children. Furthermore, 48 of these families continued from the infant phase and 20 were new recruits.

What's Next?

While the preschool phase has concluded, our team is actively preparing for the next stage of our research. We are excited to announce that we will be transitioning into the primary school phase of the EDiTS study. Charlotte and Professor Jo Van Herwegen from UCL have been awarded a PHD studentship funded by ESRC (Economic and Social Research Council) in partnership with the Tuberous Sclerosis Association. This will allow us to initiate the primary school phase.

Cheyenne Contreras has also been awarded this PHD studentship which she will use to investigate the early predictors of educational experiences for people with TSC, especially focusing on school readiness. She will also be co-designing a novel protocol with families and education professionals to track the vital transition through primary school.

Pip and the Brain Explorers

One of the fun tasks we will ask children to complete is the Pip and the Brain Explorers app, developed by our collaborators at Birkbeck. This app includes a series of fun and interactive games designed to measure cognitive development, including control, attention, focus and social processing.

E-Snore Mobile App

We are working with our collaborators at the University of Birmingham to collect information about children's sleep and movement, as this is an important part of development. To do this we will ask parents to complete a 'sleep diary' which includes a range of questions about their child's movement each day and night.