A very important study investigating the incidence of Sudden Unexpected Death in Epilepsy (SUDEP) in Ireland has been published in the leading epilepsy medical journal, Seizure.
The study, which began its work in 2020, was led by Dr. Yvonne Langan of the Department of Neurophysiology at St. James’s Hospital, working in partnership with researchers from the Health Research Board. The study was funded by Epilepsy Ireland, the Irish Institute of Clinical Neuroscience and Jazz pharmaceuticals.
SUDEP is defined as sudden, unexpected, witnessed or unwitnessed, non-traumatic and non- drowning death in an individual with epilepsy with or without evidence for a seizure and excluding documented status epilepticus where postmortem examination does not reveal a cause for death. The study is the first of its kind in Ireland, providing accurate national statistics on SUDEP for the first time. Until now, estimates on the incidence of SUDEP needed to be made using data from international studies.
All sudden deaths in Ireland must be investigated by a coroner. Using data from all deaths referred to coroners in the reference year of 2019, the researchers identified all those with a history of epilepsy. The following are the key findings from this research:
- A total of 33 cases of definite SUDEP in the reference year of 2019 were found
- This included 21 men and 12 women
- The age range of those who died ranged from 9 – 81 years old. The median age was 45.
Using established data on the prevalence of epilepsy in Ireland, we can now state that the incidence rate of SUDEP in Ireland is 1:1,400 per annum.
This is a significant finding – and we believe that the publication of this study is the starting point for a wider conversation about SUDEP and epilepsy risk. Targeted action must now be taken to reduce the incidence of SUDEP in Ireland. For example, improved access to specialist care and treatments should increase a person’s chance of becoming seizure-free – thus reducing one of the biggest risk factors for SUDEP (uncontrolled, untreated seizures.
This point is echoed in the study itself, with the authors stating:
“It could be argued that rather than undertake an Irish specific study that the incidence of SUDEP in other jurisdictions could be extrapolated to the Irish population. However, given that access to specialist epilepsy care may influence seizure control and impact on the risk of SUDEP it is important that there is data that is specific to Ireland. This will be helpful in increasing awareness of SUDEP and informing health care providers.”
To read a summary of the study which has been published, visit the ‘Science Direct’ website.
Continuing Research
While this study has published data specifically on the incidence of SUDEP in Ireland, the work of analysing the data collected from 2019 is continuing. When completed, this work will determine the incidence of total epilepsy-related deaths in Ireland.
Currently, using international data, we estimate that that there are over 130 epilepsy-related deaths in Ireland annually (including SUDEP but also for other reasons such as seizure-related injuries, status epilepticus or seizure-related drowning.)
For families affected, the loss of a loved one due to SUDEP or any other form of epilepsy-related death is devastating – as can be seen by some of the stories we have shared for SUDEP Action Day 2024. We must do whatever we can to reduce these numbers, which is why one of our key new Advocacy campaigns moving forward will be to campaign for the development of a State-led National Strategy to reduce epilepsy-related deaths in Ireland.
The publication of this study on SUDEP incidence marks the beginning of this campaign, which will be further supported by future findings on total epilepsy-related deaths. We would appeal to our members, supporters, and service-users to please support this campaign as it begins today and would encourage all people with epilepsy and their families to take a moment to learn more about SUDEP and managing risks this week. You can do so by visiting the ‘SUDEP’ section of our website.
We know action on this issue is something that the epilepsy community is passionate about. In our recent Advocacy survey, a campaign around reducing epilepsy-related deaths was identified as a top priority by people with epilepsy and their families. Similarly, as part of the preparatory work to shape our research calls, research around SUDEP consistently features as one of the key priorities that the epilepsy community want us to invest in. Finally, from surveys conducted in both 2020 and 2023 around SUDEP Communication and awareness of risk, it is clear there is a strong appetite within the epilepsy community to be informed about SUDEP at the earliest opportunity. Most people want to be told by their neurologist, regardless of whether they are deemed being high risk or not.
We would like to thank Dr. Langan and Dr Ena Lynn and her colleagues at the HRB for their outstanding work on this important research. We would also like to thank our donors and supporters for their continued commitment to the work of Epilepsy Ireland. Our investment in supporting this study would not have been possible without the incredible fundraising efforts which happen year-round in support of our work.
Finally, our thoughts are with all those who have lost a loved one due to SUDEP or an epilepsy-related death. We hope that our new campaign in this area will help to prevent other families going through what you have experienced over the years.
Ar dheis Dé go raibh a n-anamacha.
Further Information
- Learn more about SUDEP by visiting the 'SUDEP' page on our website.
- If you have lost a loved one living with epilepsy, please consider providing their details to the Epilepsy Deaths Register for Ireland. For more details, visit the Epilepsy Deaths Register for Ireland website.