Study one explores behaviour in children aged 4-15 years and living with TSC. It will take place through a questionnaire-based study of behaviours, health, mood, social functioning and level of ability. The questionnaire can be completed online or via a paper copy, taking approximately one hour to complete.
Study one will include asking participants to collect an optional saliva sample from the child being cared for. This will allow the researchers to confirm a genetic diagnosis or TSC.
Study two is a study of sleep in children aged 4-15 years and living with TSC. It will require a caregiver to oversee a child’s daytime and night time activity for a ten-day assessment period. During this time, the child will wear an actiwatch (a small lightweight device worn on the wrist or ankle that monitors movement) which will send data to an app.
Study two includes a telephone interview to discuss the child’s behaviour, health and development, as well as a pre-assessment questionnaire. Families who wish to take part in both studies are kindly requested to take part in study one before taking part in study two.