Making Dravet Syndrome more visible with pioneering data collection

Lead researcher: Professor Sameer Zuberi 

Partners: Paediatric Neurosciences Research Group, Royal Hospital for Children Glasgow | Epilepsy Research UK

We provided funding to the Paediatric Neurosciences Research Group, based at the Royal Hospital for Children Glasgow, to build and develop a research database on epilepsies that start in childhood.

One of the databases contains over 6,000 patients who have been referred for genetic testing because they have had epilepsy in childhood. Another includes more than 3,000 patients who have been referred for testing of the SCN1A gene.

As a result of this data collection and research conducted by Professor Zuberi's team, it was revealed that Dravet Syndrome is more common than previously thought, occurring in around 1 in every 15,000 live births in the UK (previously it was estimated at between 1 in 20,000 to 1 in 40,000). 

In addition, the database has:


“Our database has allowed us to invite children with Dravet Syndrome from Scotland, Northern Ireland and the Republic of Ireland to participate in randomised control trials of cannabidiol and fenfluramine. We have even collaborated with colleagues in the US and Denmark to see if we can predict whether someone with a change in the SCN1A gene will develop Dravet Syndrome.”

Professor Sameer Zuberi