e-SNORE (Exploring Sleep and Neurodevelopmental disorders through Online and Remote Evaluation)
What is the e-SNORE project?
Sleep is an important part of our everyday lives. Sleep and it’s impact on waking hours is an important research area globally. Sleeps impact on overall wellbeing has been proven. However, there is currently limited research into the relationship between sleep and its effect on TSC related symptoms such as seizure severity and physical symptoms associated with pain.
Exploring Sleep in Neurodevelopment disorders through Online and Remote Evaluation (e-SNORE) is a project which hopes to enable us to gain a better insight into sleep problems in TSC , how it can impact behaviours and ways of managing symptoms associated with sleep problems.
How to get involved in the e-SNORE project
The data collection for this study is now complete – thank you to everyone who got involved! The research findings will be published via research publications, the Cerebra Network and on the TSA’s website.
What was the study about?
e-SNORE was a direct study of sleep in children living in the UK with TSC.
Who took part?
Children aged 4-15 years with a confirmed genetic diagnosis of TSC and their parents and caregivers.
What did the study involve?
Children wore an activity monitor (actiwatch) day and night, across a ten-day study period. Caregivers were asked to record children’s behaviour, seizure and sleep information, every morning and evening for the 10 days, using the eSNORE mobile app. Caregivers also completed sleep questionnaires and telephone interviews as part of this study.
You can read more about the study on the The Cerebra Network website, here.
The data collection for this study is now complete – thank you to everyone who got involved!
In the video below, Dr Stacey Bissell and her team tell us more about the project, and exactly what was involved in taking part. Please note, this study is now closed, so you can no longer take part.
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow