EDR plays key role in understanding epilepsy deaths
SUDEP Action’s Epilepsy Deaths Register (EDR) is recognised for embracing vital data which could be missed by conventional mortality records.
The Epilepsy Deaths Register (EDR), created and managed by SUDEP Action, is a web-based platform where bereaved families and professionals can provide information about epilepsy-related deaths to help research and improve safety for people with epilepsy. This confidential, online register collects details on all deaths with people who have epilepsy, or were suspected to have epilepsy, focusing on the circumstances around the death and the support provided. Information is used in anonymised reports to raise awareness, identify service gaps, and inform the development of new safety tools and practices to prevent future deaths.
Most epilepsy deaths take place in homes, with no clinical witnesses. SUDEP Action’s Epilepsy Deaths Register (EDR) is therefore shaping research through third party reports – an effective and under-utilised tool for understanding SUDEP deaths.
The EDR identified 407 confirmed and probable SUDEP cases between 2013 and 2024, with the majority of these deaths occurring between the ages of 19 and 49 (76%). 59% of these deaths were male and 69% of deaths occurred during sleep.
Data from the EDR shows inconsistencies between death certification and the accounts and narratives of those reporting a death to the research register. Inconsistences were present in around a quarter of cases (24.8%).
A growing body of research evidence is being developed through the EDR including a recent publication in Seizure: European Journal of Epilepsy, entitled: “The epilepsy deaths register: Third-party reports of SUDEP in adults and older adolescents”.
This paper highlighted:
- Under-reporting of SUDEP in death-certification
- Increased risk with longer epilepsy duration
- Deaths in people who might be considered ‘low risk’, showing the importance of universal SUDEP risk-discussions
- The value of the EDR, as the largest research database of its type in the world
Alex Grundmann, an NHS Academic Foundation doctor who led on the paper into SUDEP deaths published in Seizure, said: “We have demonstrated that third-party reporting through the EDR offers a way to capture adult SUDEP cases that traditional mortality statistics may underreport. This opens new pathways for building a comprehensive understanding of SUDEP and complements current research practices, bringing us closer to identifying preventable risk factors and reducing epilepsy-related mortality.”
Ben Donovan, Research Manager at SUDEP Action, added: “It shows our data is vital for helping to pinpoint gaps in services for people with epilepsy and those who are bereaved, and to show the true scale of SUDEP and epilepsy deaths. Only by properly understanding past deaths can lessons be learnt for the future.”
Dr Rhys Thomas, SUDEP Action Trustee and Honorary Consultant Neurologist, specialising in epilepsy at the Royal Victoria Infirmary’s Neurosciences Centre in Newcastle, said: “When grieving a sudden death, it is natural to feel anger about a life cut short. The epilepsy death register (EDR) is a unique repository of loss. The collective opportunity amplifies the voices of the bereaved and provides a rich and valuable resource for policy and research.”
If you would like to report a death with the Epilepsy Deaths Register, click here.
