Babies with Tuberous Sclerosis

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. To assess this, we have 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 are diagnosed prenatally, to join our study and undergo a range of assessments. 

 

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

Typically Developing Babies

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

 

For typically developing babies, all visits can be done at home. To find out the kind of assessments we have done at each age see the diagram below. 

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

What is eye-tracking?

Eye-tracking has been used for several years to understand attention and perception in infancy. The eye tracker allows us to see exacly where the baby is attending on the screen. Take a look at our Information Sheets for more details!