Dravet Syndrome UK joins new research collaboration

The University of Glasgow has been awarded a three-year Endeavour Project Grant from the Epilepsy Research Institute to lead crucial studies into Dravet Syndrome, a hard-to-treat form of epilepsy which begins in infancy.

The research, led by Professor Andreas Brunklaus in the University’s School of Health and Wellbeing, will be done in collaboration with others, including Dravet Syndrome UK (Chief Science Officer, Ceri Hughes), King’s College London (Dr Charlotte Tye and Dr Richard Rosch) and Great Ormond Street Hospital (Dr Amy McTague).

Dravet Syndrome is a devastating genetic condition which causes frequent, hard-to-control seizures and long-term neurodevelopmental impairment. The condition also causes feeding difficulties, movement problems and has a high risk of premature death. Current treatments fail to control seizures in most patients and there are no approved medicines that address the condition’s devastating cognitive and behavioural impacts.

However, as new gene-targeted treatments for this condition emerge, the researchers hope to create a robust framework for clinicians to help them predict progress and measure benefit, creating a toolkit for NHS care which will measure neurodevelopmental outcomes and disease severity for patients with Dravet Syndrome.

Currently, doctors may still rely on ‘trial and error’ treatments, so it’s hoped the research – which will use a combination of computational modelling, samples and at-home research– will allow for greater insight into Dravet Syndrome, and the work will speed up clinical trials and support treatment decisions.

"We are delighted to receive this grant, which will go some way to hopefully improving the treatment potential for children with Dravet Syndrome. By delivering well tested, family friendly measures and exploring a potential blood marker, this study aims to improve trial readiness, guide treatment decisions, and give families clearer evidence to seek appropriate support.”
Professor Andreas Brunklaus, Consultant Paediatric Neurologist at the Royal Hospital for Children, Glasgow
"We're pleased to be collaborating on this project that is a step towards giving clinicians and families the tools to make the best treatment decisions for each child. We know that for families living with Dravet Syndrome, decisions about treatment can be complex and daunting. Having reliable clinical tools to support these decisions will make a real difference."
Ceri Hughes, Chief Science Officer at Dravet Syndrome UK

An exciting collaboration

We've included a summary of the research that will be undertaken, during the three-year Endeavour Project Grant from the Epilepsy Research Institute, in the research section of our website.

About Dravet Syndrome

Dravet Syndrome is a rare, life-long and life limiting neurological condition. It includes seizures, intellectual disability and a range of associated health conditions known as ‘comorbidities’.

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