Transforming understanding of Dravet Syndrome – SCN1A Horizons Natural History Study

Lead researcher: Professor Andreas Brunklaus

Partners: University of Glasgow

Start date: 2023  

The SCN1A Horizons Natural History Study will collect health information from up to 400 children and adults with SCN1A-related epilepsy, such as Dravet Syndrome, over three-years. It will study how people from across the UK, who have SCN1A-related epilepsy, experience the condition. 

For Dravet Syndrome, this includes everything from how often and severe their seizures are, to how many have features of ADHD and autism. Capturing this detailed information in a standardised way over time will help to better understand the main difficulties for people living with the condition, as well as what treatment helps. 

This research will allow us to learn more about the seizures, learning abilities and behavioural difficulties that children and adults with Dravet Syndrome live with. This will help health professionals to choose treatments that improve someone’s quality of life, as early as possible.

Researchers are also collecting information about the range of care provided in the UK. They aim to use this data to improve care standards for everyone affected by SCN1A-related epilepsies, including Dravet Syndrome. 

More details on how to take part in this research, when available, can be found here. The study team can be contacted on SCN1AHorizons@glasgow.ac.uk with any enquiries.

You can read more in our news article here.