On #SUDEPActionDay2020, we are pleased to announce new research funding of up to €25,000 towards a research project which will investigate the incidence of epilepsy-related deaths in Ireland and the circumstances surrounding them.
The 18-month study will be led by Dr Yvonne Langan, St James’ Hospital Dublin. Yvonne has undertaken significant research into epilepsy mortality and sudden unexpected death in epilepsy (SUDEP) over the years and is an internationally renowned expert on the subject.
The study will be undertaken with the support of the Health Research Board (HRB), who have an established mechanism in place for accessing data held by the coroners in Ireland. This mechanism, the National Drug Related Deaths Index (NDRDI) is currently used to interrogate data to identify deaths related to drug and alcohol abuse. By partnering with the NDRDI, the study will now identify, via research nurses, deaths in people with epilepsy nationally across a full calendar year and analyse all available records.
People with epilepsy have a higher death rate when compared with those in the general population of similar age. These deaths may be related to the underlying condition which caused the epilepsy but also may be due to the very fact of having epilepsy itself. Epilepsy-related deaths include accidents and drowning during a seizure, as well as SUDEP, the cause of which is as yet unknown.
In the new study, deaths in people with epilepsy will be classified as epilepsy related or non-epilepsy related. It will also isolate cases of SUDEP which will then be used to determine for the first time ever, accurate Irish data on the incidence of SUDEP in Ireland. We will also be able to compare Irish figures to those from other populations.
Until now, we have had to rely on estimates based on international studies but by getting recent and accurate information, we hope to increase awareness of SUDEP among people with epilepsy, health professionals and policy makers; emphasise the need for improved expert epilepsy care; and ultimately kick-start a much needed conversation on reducing avoidable epilepsy-related deaths. It is also possible that particular factors may be identified which influence the risk of SUDEP in Ireland that do not appear in other countries. Information on other epilepsy-related deaths such as drowning or accidents will also be vital in highlighting the need for safety and risk management in epilepsy and the need for good epilepsy support and self-management. The accuracy of death certification will also be examined.
We know that this is an area that our members and people with epilepsy want to see researched more, as it was identified as the number one research priority in a survey before our latest research call last year.
SUDEP is understandably one of the most feared aspects of the condition. However, the risk of SUDEP in any one individual with epilepsy is low and the better your seizures are controlled, the lower the risk. There are a number of ‘modifiable’ risk factors that can be influenced by self-management approaches, although some non-modifiable risks such as seizure type and age also exist.
We are delighted to support this vital research in what is a complex and often under-studied area and which could have major implications for the future of epilepsy care in this country. We want to thank all our supporters who donate to our research funding efforts, especially participants in our ‘Time For a Break’ monthly draw. We also want to thank all the bereaved families who have raised funds for Epilepsy Ireland over the years including Tour De Gaggs and the Cisco Matching Donor Advised Fund. Without your support, this investment would not have been possible.