Epilepsy Deaths Register

Making every epilepsy death count

The Epilepsy Deaths Register

The Epilepsy Deaths Register

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 Epilepsy, is one of the top ten causes of death in young people (early or premature deaths)

There are approximately 130 epilepsy-related deaths in Ireland each year

Epilepsy Ireland partnered with UK charity SUDEP Action in 2014, to set up the Epilepsy Deaths Register for Ireland (EDRI).  The register is based on the UK Epilepsy Deaths Register which was launched in 2013 and it shares much of the same infrastructure and professional personnel.

If you are reading about the EDRI, you have probably experienced an epilepsy-related death.  You possibly know about, or, have heard of Sudden Unexpected Death in Epilepsy (SUDEP) and you may also know that there are many questions that desperately need an answer.

The register provides:

  • a single-point for people to provide information for research into epilepsy deaths
  • reports which highlight the experiences of people with epilepsy and the bereaved
  • support for those helping research by providing information on epilepsy deaths
  • coordinated involvement in research / information for approved teams

The EDRI offers a safe place for people to report details of an epilepsy-related death and to provide further information about the lifestyle choices made by the person who died, where available.  This information allows researchers to look beyond the numbers of deaths and look at awareness of risk and other factors.

 

One of Epilepsy Ireland’s key objectives is to undertake, encourage and fund research into all aspects of epilepsy.  Epilepsy mortality has been identified as a key area where high calibre research is urgently needed.

Within Ireland there are many researchers with the interest and expertise to conduct much needed research and they urgently need this  information to:

  • Reduce epilepsy-related deaths
  • Improve epilepsy advice and treatment plans
  • Identify and prioritise new epilepsy research
  • Improve public awareness of epilepsy-related risk including SUDEP
  • Decide where best to put funding to improve services for people with epilepsy

 

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

 

 Please use our phone line for any questions: 01 906 1868 (please leave a message for a call back)

or email: team@epilepsydeathsregister.org

 

 

Who can register?
Expert Team