Epilepsy Ireland and SUDEP Action to establish Epilepsy Deaths Register for Ireland
SUDEP Action has been awarded funding to work with Epilepsy Ireland to establish an Epilepsy Deaths Register (EDR) for Ireland.
The National Epilepsy Care programme for Ireland estimates that there are 100-150 epilepsy deaths each year. However, only 61 deaths were included in recent national statistics suggesting a lack of awareness and under-reporting of epilepsy deaths in Ireland.
Mike Glynn, CEO of Epilepsy Ireland attended the Westminster launch of the Epilepsy Deaths Register in June last year and met with SUDEP Action to discuss partnership working in Ireland.
Funding has now been awarded to SUDEP Action to work with Epilepsy Ireland to establish an Epilepsy Deaths Register for Ireland.
The Epilepsy Deaths Register for Ireland will be launched during 2014. The aim of the register is to work with researchers to help with the prevention of epilepsy deaths and in the understanding of Sudden Unexpected Death in Epilepsy (SUDEP).
Mike Glynn from Epilepsy Ireland commented: “The register will provide a place where bereaved families can register an epilepsy- related death. This information will be used for medical research, in the hope that it will one day help towards finding a cure and prevent more unnecessary loss of life”.
Jane Hanna OBE from SUDEP Action highlighted the importance of the register commenting that: “registers of epilepsy death are a vital new development in work on prevention across the world. SUDEP Action and Epilepsy Ireland have worked together on SUDEP Awareness since the 1990’s and the Epilepsy Deaths Register for Ireland partnership is a major landmark on this journey”.
The priority for EDR for Ireland in the first year will be to raise awareness of SUDEP and epilepsy-related mortality and maximise registrations. Bereaved families will be invited to register information; take part in a survey of their experiences and be asked to consent to further contact from researchers.
Professor Henry Smithson, University of Cork and Brigitte Colwell, University of Sheffield will analyse the information from Ireland and will compare these with the UK. The Epilepsy Deaths Register for Ireland will report in 2015.