EDiTS Infant Phase (2016-2021)

Tuberous Sclerosis Complex (TSC) is a rare genetic disease that causes benign tumours to grow in the brain and on other vital organs, and can result in a range of symptoms including seizures, autism, intellectual impairment and behavioural problems. The aim of this study is to follow the development of babies with Tuberous Sclerosis to better understand the condition and how it affects development.

The EDiTS study infant phase involved a range of assessments that were carried out in the family home and in our research centre in London. Below you will find an outline of the assessments we conducted between the ages of 3 months to 24 and/or 36 months.

To assess this in the infant phase of the EDiTS Study, we recruited 30 babies aged between 3 months and 14 months of age (with a first visit taking place up to 14 months of age) with TSC that were diagnosed prenatally.

In order to understand how TSC affects babies development, we needed a comparison group of babies who were typically developing. We enrolled 30 typical babies aged between birth and 14 months old to take part in the infant phase.

​

Babies with Tuberous Sclerosis

Typically Developing Babies

Check out our video describing the EDiTS Study and infant testing phase: