SUDEP Action

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Researchers back SUDEP Action’s call for more funding into epilepsy deaths

Researchers have joined SUDEP Action in calling for epilepsy mortality to be recognised as a top priority for UK and European research funding.  Research teams from King’s Health Partners; University College, London, and the Universities of Cardiff, Cork, Exeter, Glasgow and Sheffield have joined forces to back the call to plug the UK funding gap in research into prevention of deaths.  

Epilepsy ranks in the top ten causes of premature deaths and is potentially avoidable.  Many young and healthy people have lost their lives and in the UK more than 3 people die a day.  SUDEP Action is working with research teams across the UK in a range of initiatives, but funds are urgently needed.

Research teams are working with SUDEP Action’s Epilepsy Deaths Register which was established last year as a resource for research into epilepsy deaths. The register has already attracted over 310 registrations since launching less than a year ago and has won funding from Epilepsy Ireland to extend our work in Ireland. Bereaved families are helping research teams with vital information and providing their permission to be contacted to help further research.  

Following a SUDEP Action research meeting in January 2014, the research teams agreed a Statement of Research Need setting out where evidence is needed to prevent deaths.The teams recognised the importance of wider awareness that urgent funds are needed to answer all the research questions that make up the current UK research gap on prevention of epilepsy deaths. The agreements reached will be used by SUDEP Action to urge funders to prioritise research into epilepsy deaths and as a guide to our work with research teams. 

Jane Hanna OBE said: “Through targeting epilepsy deaths SUDEP Action led the first investigation into epilepsy deaths and since then has provided funding to help identify mortality trends; risk factors; and also specific areas such as the role of medication taking and alarms.  SUDEP Action has invested in The Epilepsy Deaths Register which makes research easier and cheaper for research teams by coordinating involvement in research, but to maximise these opportunities major funding is needed now”.  

Professor Mark Richardson said:  “SUDEP Action has worked tirelessly to fund the research gap, but external funders do not often understand the research gap or fail to prioritise it. We will use this statement of research need to gather support and to both inform and persuade funding bodies that work on prevention of deaths should be a clearly stated priority”.  

Click here for the The Epilepsy Deaths Register Statement of Research Need