Using global patient data to find markers for SUDEP

Dr Michalis Kassinopolous
ERUK Endeavour Project Researcher
Institute of Neurology, University College London

Ahead of SUDEP Action day this Friday 23rd October, this week’s blog is by Dr Michalis Kassinopolous who is working on a project aiming to identify risk factors for SUDEP (Sudden Unexpected Death in Epilepsy). The ERUK Endeavour Project Grant, led by Dr Beate Diehl, 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. Let’s find out how…

What is SUDEP?

SUDEP is a tragic consequence of epilepsy – when a person dies suddenly and unexpectedly and no cause of death is found. There are around 21 epilepsy-related deaths every week in the UK, and it is estimated that SUDEP accounts for around half of these. SUDEP often occurs in young people during sleep, but why this happens is currently unknown. People who died of SUDEP often present altered patterns in heart rate and breathing which suggests that disruptions in brain regions that control cardiac and breathing activity may play a role in SUDEP.

How will your study help to better understand why SUDEP happens?

In this study, we will use specialised MRI data that show the brain activity of subjects to yield insights into the mechanisms that lead to SUDEP. Specifically, we want to see how areas in the brain that control cardiac and breathing activity “talk” with each other in people who later died of SUDEP and how this communication differs from people living with epilepsy.

How will you do this?

Heart rate and respiration are controlled by brain networks which are comprised of different brain regions whose exact locations vary slightly across individuals. As such, to accurately map these regulatory brain networks, we will use sophisticated pattern recognition algorithms and physiological recordings of participants, along with the MRI data. EEG recordings that were also measured will be used to identify time periods during which the participants were asleep and periods when they were awake. This is important as it will allow us to examine whether sleep has any effect on the regulatory brain networks and may explain the increased risk for SUDEP during sleep.

For the purposes of this study, an international team has been formed and patient data has been collected in six different hospitals in the UK, Australia, Canada, France, Italy, Switzerland. The use of global patient data is an essential component for the success of this study. Pooling data from hospitals in different countries not only leads to a larger number of SUDEP cases to examine but also increases our confidence in the findings. This in turn means that we will be able to apply the findings to people living with epilepsy both in the UK and internationally.

One of my roles as a research fellow working on this study was to travel to each of the five centres outside the UK to analyse the clinical data collected by our international collaborators. However, due to travel-restrictions related to the ongoing COVID-19 pandemic, we have had to adapt quickly to new ways of communicating and conducting research to ensure the smooth progress of the study.

Why is this research important?

This study is of particular importance as it aims to understand how sleep affects brain regions and networks responsible for the regulation of vital physiological functions, and to uncover why SUDEP frequently happens during sleep. Achieving the goals of this study may lead to more accurate markers of SUDEP risk which will help to identify people at higher risk. Furthermore, the findings may pave the way for improved therapeutic interventions to reduce epilepsy-related deaths.

Dr Michalis Kassinopoulos

Promoting, encouraging and funding research into the causes, diagnosis and clinical management of people with epilepsy and associated conditions

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Developing the next generation of epilepsy researchers and capacity building the epilepsy research environment

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Accelerating innovations for people with epilepsy by supporting research that will influence clinical practice and health policy

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