If you are reading about The Epilepsy Deaths Register for Ireland, you probably have experience of an epilepsy death. Possibly, you already know or have heard of Sudden Unexpected Death in Epilepsy (SUDEP). You may know some of the many questions that desperately need an answer.
Research teams are slowly finding out more about SUDEP and other epilepsy-related deaths. Nevertheless there is still much more work to be done. Every person who reports an epilepsy-related death helps the research. They bring our knowledge one step closer to finding the answer to SUDEP and other epilepsy related deaths.
Have you seen information on numbers of epilepsy deaths per year? Reported epilepsy deaths have increased. This is not a surprise. Today investigators are better informed about SUDEP and epilepsy deaths. Even so we know that some epilepsy deaths are missed. Problems identifying epilepsy deaths that have happened and lack of access to information make research difficult and expensive.
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 and even within Ireland , there are many researchers with the interest and expertise to conduct this much needed research. That is why Epilepsy Ireland have partnered with UK charity SUDEP Action to set up The Epilepsy Deaths Register for Ireland. The Register is based on the UK Epilepsy Deaths Register launched in 2013 and shares much of the same infrastructure and personnel. The Epilepsy Deaths Register for Ireland will provide:
- a single-point for reporting deaths in Ireland
- reports on information provided
- support for anyone wishing to help research into SUDEP and epilepsy deaths
- coordination of involvement in research.
- over 50 years’ combined expertise in SUDEP and epilepsy deaths
- experience involving people in research
- led the last National Sentinel Clinical Audit of Epilepsy-Related Deaths in the UK
Professor Henry Smithson, University College, Cork and Brigitte Colwell, Sheffield University Primary Care Academic Medical Unit are providing academic support to The Epilepsy Deaths Register for Ireland. To date, the team have developed the first survey for The UK Epilepsy Deaths Register aimed at capturing the experiences of bereaved families. This is part of an international collaboration which will compare experiences reported by bereaved families in the UK, Ireland, Canada and Australia.
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