Help shape the future of SUDEP research
The National Institute for Health and Care Research (NIHR) is inviting people to suggest health and care research questions that they think need answering.
What question about Sudden Unexpected Death in Epilepsy (SUDEP) or other epilepsy-related deaths do you think research needs to answer?
Ahead of SUDEP Action Day on 21 October 2026, we’re joining forces with the Epilepsy Research Institute to raise awareness of the urgent need for more research in this crucial area – and we want you to help shape what comes next.
We want to hear from you
The National Institute for Health and Care Research (NIHR) is inviting people to suggest health and care research questions that they think need answering. These suggestions can help identify important areas for future research and inform what research is prioritised for funding.
Will you submit a research question about SUDEP or other epilepsy-related deaths?
Whether you have epilepsy, have lost someone to SUDEP, support someone with epilepsy, work in healthcare or research, or simply want to help improve understanding of SUDEP, your question could help shape future research.
Submit your research question
It’s quick and easy to share your idea through the NIHR website. Think about a question you would like research to answer – whether it’s about SUDEP, epilepsy-related deaths, risk, prevention, treatment or another aspect of epilepsy.
SUDEP Action and the Epilepsy Research Institute will also be collating research ideas in a proposal to share with the NIHR to help shape future priorities for research funding. If you would like to add your suggestion/s to this, please send them to ben.donovan@sudep.org.
Why does SUDEP research matter?
For more than thirty years, SUDEP Action has led the way in pushing for greater understanding of SUDEP. When the charity started, few even accepted it was possible to die from epilepsy, but in 2022, the UK Epilepsy Priority Setting Partnership identified epilepsy-related deaths, including SUDEP, as the top research priority for epilepsy.
SUDEP Action has funded and led on major SUDEP / epilepsy deaths research projects for more than three decades and remains involved in three long-running research projects. Our Epilepsy Deaths Register is the largest and most powerful collection of information on epilepsy deaths in the world.
We know the important role research can play in preventing deaths – but we need the wider research community to play its part too, in finding answers to long-held questions. That is why we are working alongside the Epilepsy Research Institute, and why we were happy to lend our expertise to the UK Epilepsy Priority Setting Partnership.
We helped bring together people affected by epilepsy, researchers and healthcare professionals through a series of workshops to identify important unanswered questions about SUDEP. This work has helped inform research priorities and recommendations, which were published in Epilepsy & Behavior and Epilepsy Currents.
These include research to:
- Better understand what increases a person’s risk of SUDEP.
- Find the best ways to communicate information about SUDEP risk to people with epilepsy and their families.
- Understand the biological processes that may lead to SUDEP.
- Develop personalised tools to help people and healthcare professionals understand individual SUDEP risk.
- Improve seizure detection technology and understand whether it can help reduce the risk of SUDEP.
- Understanding and addressing the impact of epilepsy deaths on bereaved family members and communities.
- Learning from epilepsy deaths to improve services and care.
What question about SUDEP do you most want researchers to answer?
