Epilepsy Deaths Register

Making every epilepsy death count

Reports & Research

Reports & Research

Thank you to everyone who has provided information to the registered so far. The Epilepsy Deaths Register now holds information on over 750 epilepsy deaths, both national and international. 

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.

Below are some reports detailing the findings and progress of The Epilepsy Deaths Register, since it was launched in 2013.

2019:  The adult profile of SUDEP using the Epilepsy Deaths Register 

ABN poster photo

 

This 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 and found that SUDEP can occur in otherwise well people with epilepsy.

Concluding that SUDEP should be discussed and safety checks embedded for everyone rather than just targeted at people known to be at higher risk.

 

 

2018:  We should be doing more for families who experience an epilepsy associated death 

ILAE 2018 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 on the risks contributing to epilepsy death, but recognising the effect of these deaths on the bereaved should be of equal priority.

 

 

2015: Findings from the SUDEP Action Epilepsy Deaths Register

This 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.

PDF icon Findings of the EDR 2015.pdf

 

2014: Findings of the SUDEP Action International Epilepsy Deaths Register 

A 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


 

Pictured - Professor Henry Smithson and Dr Brigitte Colwell 

 

 

 

 

PDF icon Findings of The Epilepsy Deaths Register Poster

 

2014: Working together to develop an Epilepsy Deaths Register (EDR)

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

 

 

Pictured - Dr Rosemary Panelli, Professor Henry Smithson and Dr Brigitte Colwell

 

 

 

PDF icon Development of The Epilepsy Deaths Register Poster

 

 

 

 

 

 
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