EDiTS study
(Early Development in Tuberous Sclerosis)
Information about the TSA-funded research EDiTS and how you can get involved
Early Development in Tuberous Sclerosis (EDiTS), a study being part-funded by the TSA, is taking place as a collaboration between King’s College London, the Centre for Brain and Cognitive Development at Birkbeck and the University of Birmingham.
The aim of the Early Development in Tuberous Sclerosis (EDiTS) study is to better understand how the development of children with TSC differs to typically developing children, and how sudden changes in seizure severity and treatment affect development. By measuring some of these components from home, researchers can work around the families and attempt to be of minimal inconvenience as possible.
The findings from this study will improve understanding of the association between TSC and different behavioural outcomes, such as autism and ADHD. In addition, the findings could inform the development of early interventions to improve behavioural outcomes and quality of life.
As the infant phase comes to a close, the team are now continuing the study to assess development and behaviour in preschool children aged 3-5 years old with TSC and typically developing children, to understand changes over early childhood and how these predict outcomes (e.g. social communication, attention and cognitive ability).
The assessments can be carried out in the family home, including a fun tablet-based game called ‘Pip and the Brain Explorers’ for your child to play, and a remote activity monitor measuring movement and sleep.
In order to take part in the study, children with TSC must:
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Be aged between 3 years and 5 years 11 months of age
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Have a confirmed diagnosis of TSC
The parent information sheet can be found here. This sheet contains information about:
- The purpose and aims of the study
- Who is organising and funding the research
- Who can participate
- What study participation involves, step by step
- Any reimbursement for your time
- The risks of taking part
- The benefits of taking part
- Data protection
- Confidentiality
- Whether or not your doctor will be informed if you take part in the study
- Who to contact if there are any problems
- Contact details for the EDiTS team
For more information on how to take part, click here.
Keep updated by following the EDiTS study on social media (Facebook: EDiTS.Study; Twitter: @EDiTS_Study), where the team post regular updates, related research, and family friendly resources.
You can also read more about the study lead, Dr Charlotte Tye, in our interview with her here.
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