Today we are supporting #SUDEPActionDay2021. The annual event brings together people and organisations to raise awareness of SUDEP – Sudden Unexpected Death in Epilepsy – and reflect on how lives are not only interrupted by epilepsy but sometimes tragically lost.

We join our charity partner SUDEP Action in calling for more conversations about SUDEP risk, raised awareness, and enhanced support, with the charity’s #Time2Change campaign. SUDEP Action has a tailored bereavement service that helps and empowers people after losing someone with epilepsy, through specialist bereavement support, counselling and casework, including support through investigations and inquests. Find out more on SUDEP Action’s website here.

There are 21 epilepsy-related deaths every week in the UK, and it is estimated that SUDEP accounts for around half of these. Unfortunately, we do not yet fully understand the underlying mechanisms of SUDEP or how to prevent epilepsy ending lives, but we do know that research holds the answer. That is why Epilepsy Research UK has invested over £1million in research to help prevent epilepsy-related deaths, including SUDEP.

Here are some examples of the vital research projects we have funded in this area:

Using global patient data to find markers for SUDEP
This Endeavour Project led by Dr Beate Diehl at University College London aims to identify risk factors for SUDEP. The project will identify how sleep affects brain regions and networks which control heartbeat and breathing and will also help uncover why SUDEP frequently happens during sleep. Dr Michaelis Kassinopoulos worked alongside Dr Diehl on this project and shared the importance of this work on our Research Blog – you can read his post here.

Investigating the causes of death of people in Scotland with epilepsy
Dr Susan Duncan at the University of Edinburgh was awarded an Endeavour Project Grant in 2015 to carry out a case control study of epilepsy-related deaths in Scotland between 2009 and 2014. This project discovered that almost 80% of epilepsy-related deaths among adults are potentially avoidable. Find out how this work is helping to change policy and clinical practice in co-investigator Dr Gashirai Mbizvo’s Research Blog, or you can watch our Research Roundtable on SUDEP featuring Dr Susan Duncan.

Reducing holistic epilepsy-risks during the COVID-19 pandemic
Last year, Dr Rhys Thomas at Newcastle University was awarded an Innovations in Healthcare project grant which aims to improve access to information about SUDEP, helping more people have conversations about risk. Read Dr Thomas’ Research Blog here to find out how his team aims to increase awareness by rolling out an award-winning educational app and producing information videos featuring people with lived experience of epilepsy.

Investigating the underlying mechanisms of SUDEP
Professor Nicholas Dale and Dr Amol Bhandare at the University of Warwick were awarded an Endeavour Project Grant to investigate the role of microglia (a type of cell located in the brain) in SUDEP. They hope to prevent the failure of cardiorespiratory neuronal networks during seizures through altering microglial activity. You can read more about their research here or hear Dr Amol Bhandare discuss the importance of this work in our Research Roundtable on SUDEP.

Research Roundtable webinar on SUDEP

Last year Epilepsy Research UK held a Research Roundtable webinar on SUDEP with ex-Wall Street Journal writer and Asia Matters podcast host Andrew Peaple, and Endeavour Project Grantholders, Dr Susan Duncan and Dr Amol Bhandare. Andrew hosted the session and shared his experiences of losing his sister Claire to SUDEP at the age of just 25. The researchers explained what SUDEP is, what we know about the cellular mechanisms that cause it, and shared recent research into epilepsy-related deaths.

You can watch the full webinar below.