New Epilepsy Death Register research identifies risk factors for SUDEP in children

The Epilepsy Deaths Register (EDR) is one of the largest research data collections of epilepsy-related deaths, worldwide, built from reports by family members and healthcare professionals.

Out of a collection of over 800 accounts and experiences, 46 incidences of definite or probable SUDEP, were identified for an in-depth research paper - representing the largest single group of Sudden Unexpected Death in Epilepsy (SUDEP) reported in children (under 16yrs).

This research looked closer at possible commonalities, like other illnesses or treatments, and circumstances near to the time of death.

SUDEP accounts for a large number of deaths in under 16s with epilepsy, yet there are still gaps in knowledge about understanding the contributory factors that influence level of risk. Using anonymised data from the EDR, researchers from the UK and South Korea worked with SUDEP Action to identify and analyse 46 cases of SUDEP in children aged 1-16.

Findings:

• Concerningly, only a minority of family members completing the EDR were aware that people could die from epilepsy
• 83% of those who died had been reported as being asleep immediately before the death. This is a strong connection, showing a need for surveillance during sleep
• 41% of cases were reported to have conditions with neurodevelopmental disorders, supporting existing research that children with epilepsy and severe neurological conditions may be at higher risk of SUDEP
• A small number of cases of SUDEP were found in young people, without other illnesses, who were still awaiting their first specialist appointment.
  (It is important to note from this that the risk of SUDEP is not restricted to those with a long history of seizures)

It is very important that the risk factors surrounding SUDEP are understood and communicated to people with epilepsy, and their families, early in diagnosis. Any epilepsy-related death is a tragedy with devastating consequences for those bereaved. Understanding the risk factors is critical in the efforts to minimize the risk of lives being lost prematurely to SUDEP.

SUDEP Action raises awareness of SUDEP risks and provides robust research to build better understanding in this area. This will then inform healthcare practice and assist people with epilepsy to manage their own risk.
Other reports and findings from the EDR research, detail its progress since it was launched in 2013, looked at areas like the Adult profile of SUDEP (2019) and the family experience after an epilepsy death (2018).

For an opportunity to get involved in research, SUDEP Action is currently conducting research into the impact of COVID-19 on those bereaved by epilepsy. For more details visit our Epilepsy Bereavement and COVID-19 Survey.

SUDEP Action is very grateful to all those people who have contributed their stories to the EDR to make this possible.