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.
Dr Henry Smithson and his research team at Sheffield University and King’s Health Partners provide research support. Our expert advisory includes international experts in SUDEP, epilepsy deaths and in registry development. For further information:
For all other enquiries please contact us at firstname.lastname@example.org.