Previous research findings suggest that the early years are key for the onset of behavioural and cognitive problems later in childhood, yet very little is known about the early years in Tuberous Sclerosis Complex. 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 may affect development. The results from this study will help us to identify which factors are linked to behavioural outcome, and to understand the effects of treatment very early in life. Ultimately, we hope to use the findings to identify babies who are at a higher risk for developing cognitive or behavioural problems so that we can target more effective interventions in the future.
What will it involve?
We will follow the development of babies with TSC from birth up to 24 months of age, through visits to the family home every few months. Families are asked to take part in a minimum of three home visits over this period. During these visits we will use a combination of parent interviews and questionnaires, play-based activities, and sensitive “eye-tracking” tests that can be administered at home. At certain ages, we are also inviting parents to visit the Birkbeck Babylab in London to collect more extensive information on brain activity, using non-invasive electroencephalography (EEG). These tests are able to tell us more about social and attentional problems in TSC, even before the baby is able to respond to experimental tasks or speak. You will receive a small gift and voucher at each visit and we can provide feedback about your child’s results.
How do I take part?
To register your interest and request a call back from the EDiTS team, click HERE. You can find out more about the study, and view and print information sheets and consent forms, on our study website. Alternatively, please feel free to contact the EDiTS team directly to find out more or to request paper copies of the consent form and information sheets.
This video explains more about the study
Who should I contact to take part/for more information?
Please contact Dr Charlotte Tye using the details below. Contact us directly for our Freepost reference if you’d prefer postal contact. You can also like our study on Facebook and follow us on Twitter, to find out the latest news!
EDiTS Study/ Dr Charlotte Tye
Institute of Psychiatry, Psychology & Neuroscience,