Reports & Research

Thank you to everyone who has provided information to the Epilepsy Deaths Register. You have helped vital research into epilepsy deaths and the devastating impact of sudden epilepsy deaths.

Reports produced by the Register are anonymised and are used to educate and raise awareness of the risks associated with epilepsy.  The information provided also highlights gaps in services for people with epilepsy and for those bereaved by epilepsy.  

The research findings are pivotal in prompting reviews in practice and since 2014, have been used to help keep people with epilepsy safe, supporting the development of information and safety tools.

Learning more about epilepsy deaths and understanding the factors around why people with epilepsy have died allows researchers to build a better picture of the condition and helps keep people safer in the future.

The EDR is the largest and most powerful collection of information on epilepsy deaths in the world


How the information you provide helps


The information provided to the EDR is important and helps both the EDR Team and the national and international researchers who support the
project learn many lessons about epilepsy related deaths.

Through published papers and academic posters, the Epilepsy Deaths Register is able to inform and educate. By highlighting gaps in services, the needs of people with epilepsy and the needs of those bereaved by epilepsy, we aim to both improve services and reduce avoidable deaths.

If you’d like to know more about the EDR and how the information provided helps research or would like the opportunity to support future research – please contact the  EDR team Tel: 0330 088 1220 (local call rate from UK) Email: [email protected]

Key research from SUDEP Action’s landmark Prevent21 Summit, was published in the leading international epilepsy journal, ‘Epilepsy and Behavior’ with a supplement containing 12 papers highlighting key research on what is, and can be done, to prevent future epilepsy-related deaths. The Executive Summary, written by Jane Hanna is available here:

Executive Summary – ‘Time to Listen. Epilepsy Mortality; Consequences and Solutions’

‘Neurologica’ journal also published the paper ‘Paediatric sudden unexpected death in epilepsy: A parental report cohort’ that looked at commonalities in SUDEP in people under the age of 16. The research highlighted a number of findings emphasizing the need to understand those risk factors that are so important in minimizing the risk of lives being lost prematurely to SUDEP.

For more information about this, click here.

The following abstract was published in the Abstract Book for the International League against Epilepsy (ILAE) Virtual Research Conference in November, 2020.

‘Epilepsy Deaths Register: Awareness of epilepsy-death and post-death support’ studied over 600 death reports and found that many bereaved were still unaware that people could die from epilepsy. Many bereaved relatives were still also being left with unanswered questions surrounding the death and without being invited to talk about the death with anyone.

The research concluded by saying that clinical teams needed to communicate epilepsy risks to promote risk-conscious behaviour at home and needed to be more pro-active in sign-posting bereaved people to specialist support.

View Abstract

 

The adult profile of SUDEP posterThis poster was presented at the Association of British Neurologists (ABN) Annual Meeting in Edinburgh in June 2019, by researchers from Newcastle University and the EDR team, which showed similar findings.

The adult profile of SUDEP using the Epilepsy Deaths Register’ studied 349 cases of SUDEP (Sudden Unexpected Death in Epilepsy) and found that SUDEP can occur in otherwise well people with epilepsy.

The research concluded that SUDEP should be discussed, and safety checks embedded for everyone with epilepsy rather than just targeted at people known to be at higher risk.

View Poster

This poster was presented at the International League Against Epilepsy (ILAE) British Chapter Conference in Birmingham in September 2018. The poster highlighted: 

~  There is an enormous amount that clinical teams can do to improve how we communicate SUDEP risk and to help families through the aftermath of an epilepsy-related death. 

~  Families wait many months for an inquest to report and yet – even after this wait – are often left with inadequate answers.

We need to continue to accurately learn of the risks contributing to epilepsy death, but recognising the effect of these deaths on the bereaved should be of equal priority.

This poster was also presented again in 2019 by the EDR team at the NHS Education for Scotland NHS Bereavement Conference.

View Poster

ILAE poster 2015This poster which provided information on deaths reported between March 2013 and March 2015 was presented at the International League Against Epilepsy (ILAE) British Chapter Conference in Istanbul in September 2015. 

The register had received 120 new reports during 2014/2015 and the findings endorsed the conclusions reported in 2014.

View Poster

PAME 2014 posterA summary of the first year report March 2013 – March 2014 was also presented at the Partners Against Mortality in Epilepsy (PAME) Conference in Minneapolis in June 2014. 

275 cases had been reported during the year. The report concluded that:

~  young people aged 20-30 appear to be most at risk

~  parents are keen to report the death of their child

~  there are still gaps in knowledge about SUDEP which need to be addressed

View Poster

This development poster was presented at the Partners Against Mortality in Epilepsy (PAME) Conference in Minneapolis in June 2014. 

The presentation highlighted the objectives of the EDR to:

~  provide a secure platform for the reporting of epilepsy deaths

~ develop sections for reporting by families, friends, health professionals and coroners/medical examiners

~  link with academic partners to establish a research ready resource overseen by an advisory group

View Poster

How to register

Report a death

Or by

  • By post: Request a printed questionnaire by telephone, or contact the team here
  • By telephone: Call our confidential line: 0330 088 1220 (local call rate from the UK) to make an appointment

You can choose to withdraw your registration at any time

The Registry produces reports based on anonymised information, all names and identifying information is removed from any published reports.

SUDEP Action own and manage the EDR, but the confidential information provided is only available to the EDR team.

If you have any questions about the register; if you would like support to complete the questionnaire or, if you would like to talk to someone about your loss, please contact our team:

Tel: 0330 088 1220
Email: Contact our team