The Epilepsy Research Institute recently held a workshop on Sudden Unexplained Death in Epilepsy (SUDEP) hosted by our Mortality, Morbidity & Risk theme leads. The event brought together leading researchers, clinicians, charity organisations and people with a personal experience of epilepsy and SUDEP to identify and address gaps in lab-based and clinical SUDEP research.
What was the aim of this workshop?
Tragically, at least 21 epilepsy-related deaths occur each week in the UK, with many classified as a sudden unexpected death in epilepsy. SUDEP often affects young people during sleep, though its exact cause remains unknown. Research has shown that those affected often present altered heart rate and breathing patterns. Several Epilepsy Research Institute-funded researchers are currently investigating why this happens, however, we still know very little about why some people are at greater risk than others.
In 2022, our Priority Setting Partnership identified epilepsy-related deaths, including SUDEP, as the top research priority. As such, the Institute’s Mortality, Morbidity & Risk strategic theme has prioritised SUDEP as its key focus. By hosting this workshop, we hoped to drive forward vital research that will better predict and reduce the risks associated with SUDEP and develop prevention strategies to decrease avoidable epilepsy-related deaths.
What did the theme leads and attendees say about the workshop?
In a joint statement, the Mortality, Morbidity & Risk theme leads, Professor Arjune Sen, Dr Rob Wykes and Dr Amol Bhandare, said:
There are still so many unanswered questions about why SUDEP happens and how it can be prevented. This workshop brought together a diverse group of experts and people personally affected by SUDEP. We identified several knowledge gaps that can now be addressed through collaborative research. Our hope is that we can explore these gaps to better understand SUDEP risk and develop strategies to reduce this risk in both the short and long term.
Sammy Ashby, CEO at SUDEP Action, said:
Many people in the UK have lost loved ones to an epilepsy-related death and it is important that we talk about how we can prevent this devastating outcome from happening in the future. The SUDEP workshop provided a fantastic opportunity for discussions and collaborations to push forward SUDEP research. I am excited by the work to come from this workshop, and the Epilepsy Research Institute and SUDEP Action co-funded fellowship, which aims to encourage researchers to focus on preventing epilepsy deaths.
David Sibree, Trustee at SUDEP Action and Mortality, Morbidity & Risk Task Force Member, said:
For many families suffering from the bereavement of a loved one from SUDEP, the first question is ‘Why has this happened?’, followed by ‘Was there anything that could have been done to prevent this death?’. The answer to the first is that no one really knows, and to the second is largely no.
For the first time, all those with an interest in answering these questions (researchers, clinicians, epilepsy specialists, charities, people with epilepsy and bereaved families) have been brought together to harness their knowledge, expertise and experience.
This workshop was both exciting and hugely collaborative, with everyone’s views being heard and respected. Everyone understood that by working together we can make a real difference in eradicating a largely unknown and unrecognised phenomenon within this condition.
What were the key takeaways?
One outcome of the workshop was the identification of crucial gaps in both pre-clinical and clinical research that should be addressed in the next five to 10 years. During group-based clinical discussions, participants highlighted the need for:
- Improved communication with people with epilepsy and their families about SUDEP risks
- Better education for healthcare professionals on SUDEP and epilepsy-related risks
- The collection of accurate standardised data across sectors to link patient data with research efforts, improving accuracy and insight into SUDEP risk factors
The group-based pre-clinical discussions highlighted the need for research questions raised in the clinic to be brought into the lab to better understand the complex changes that contribute to increased risk and ultimately cause SUDEP. For example, exploring changes in the brainstem—responsible for essential functions like breathing and heart rate—as well as other factors like infection and body temperature. Groups also discussed whether we could use animal models to better understand SUDEP risk factors, including anxiety, stress and depression.
The workshop identified numerous collaborative research opportunities. In the coming months, a workshop paper will be produced to maintain momentum and foster a co-ordinated approach among basic science and clinical researchers. Together, they aim to uncover the links between epilepsy and SUDEP and pave the way forward for preventative measures.
If you’re a researcher interested in investigating epilepsy and SUDEP, learn more about our co-funded Emerging Leader Fellowship Award with SUDEP Action. Sign up to The Hub to be the first to hear about future workshops.
16 October 2024 marks SUDEP Action Day – a day dedicated to raising awareness of epilepsy deaths worldwide. Throughout the week (14-18 October), SUDEP Action is sharing stories and information to raise awareness about epilepsy and SUDEP and spread understanding. Find out how you can get involved on their website.