Welcome to the Early Development in Tuberous Sclerosis study (EDiTS)
Every month around 10 babies are born in the UK with TSC. An estimated 1 million people world-wide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood.
TSC is associated with variable outcomes in later childhood, including problems in social communication (e.g. autism spectrum disorder), attention (e.g. attention deficit hyperactivity disorder) and cognitive ability (e.g. intellectual disability). Findings suggest that the early years are key to understanding these later outcomes.
Still, very little is known about TSC in infancy. This is because previous work has asked parents to try to recall what their child was like in the first two years of life, and also because the tests used were not sensitive enough to these changes. By understanding how TSC affects early development in babies, we can have a better understanding of the condition and hopefully provide data that will improve the outcome for individuals with TSC.
King's College London and Birkbeck Babylab have teamed up for a new project investigating the development of babies with TSC. The aim of the Early Development in Tuberous Sclerosis (EDiTS) Study is to better understand how the development of babies with TSC differs to typically developing babies, and how sudden changes in seizure severity and treatment affect development. Furthermore, by being able to do most of the components from home, we can work around the families and attempt to be of minimal inconvenience as possible.