If you are reading about The Epilepsy Deaths Register, 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 in the United Kingdom are better informed about SUDEP and epilepsy deaths. Even so we know that some epilepsy deaths are missed. We are also unaware of deaths that are reported to national statistics. Problems identifying epilepsy deaths that have happened and lack of access to information make research difficult and expensive.
That is why research teams, doctors and nurses have asked SUDEP Action to set up the Epilepsy Deaths Register. The Epilepsy Deaths register is endorsed by the government and promoted by professional and patient organisations around the UK to provide:
- a single-point for reporting deaths
- 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
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 and working with SUDEP Action has developed the first survey for The 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, with the experiences of families worldwide. In addition they are supporting SUDEP Action in developing telephone interviews with families which will be extremely valuable in collecting qualitative information. Professor Henry Smithson led the primary care arm of the last National Audit of Epilepsy Related Deaths.
The Epilepsy Deaths Register is also supported by a collaboration with researchers at King's Health Partners, University College London and Exeter Medical Team who are members of the Project Management Committee.
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