Get Involved in Research

Find out more about how you can take part in studies to improve understanding of Dravet Syndrome and, if you're a researcher, discover what support we can provide.

Take part in research funded by Dravet Syndrome UK

By taking part in our research, you’ll help to improve understanding of Dravet Syndrome and find more treatments to benefit everyone affected by the condition.

Taking part can be anything from talking about your experience in a focus group, answering survey questions about living with Dravet Syndrome, or trialling new treatments.

Parent/Carer Focus Groups; 

We’re conducting research, through focus groups, into the emotional challenges faced by parents/carers of people living with Dravet Syndrome. 

We're recruiting parent/carers to join focus groups in London on Saturday 11 February 2023, Chesterfield on Friday 3rd March, and Manchester on Saturday 4 March 2023. You must be registered with Dravet Syndrome UK to take part. 

Click here for more information. To register your interest please fill in our registration form.

The SCN1A Horizons Natural History Study; 

It is hoped that the SCN1A Horizons Natural History Study will start recruiting participants across the UK in Spring 2023. The study will open in phases across the country, starting in Scotland. Watch this space for more details.

Take part in non-Dravet Syndrome UK funded research projects

ADMIRAL Study;

Stoke Therapeutics are running the ADMIRAL Study to investigate STK-001, a gene-based therapy for Dravet Syndrome. The study will test whether a medication given as three injections helps reduce seizures and improves wellbeing. The ADMIRAL Study is recruiting up to 60 children and adolescents in Glasgow, Edinburgh, Sheffield and London. Find out more at www.admiralstudy.com