SUDEP Action

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SUDEP Action welcomes SUDEP Centre Without Walls

SUDEP Action welcomes the injection of $5.9 million to finance the start of a SUDEP Centre Without Walls. The Center will encourage collaborations, including sharing of data and resources, between 9 groups of scientists. The research teams will share the $5.9 million to work together to speed up the pace of research on Sudden Unexpected Death in Epilepsy (SUDEP), the leading cause of death from epilepsy. The National Institute of Neurological Disorders and Stroke (NINDS) is part of the National Institutes of Health (U.S) and is funding this initiative. 

Jane Hanna, CEO of SUDEP Action said: “Bereaved families in the UK welcome this major injection of funding into SUDEP Research.  It is a major boost to the search into why some people die suddenly from SUDEP and gives hope that a new treatment may be proved in the future to stop deaths. To play our part, SUDEP Action is thrilled to be collaborating with the UK arm of the SUDEP Centre Without Walls, based at UCL, which is investigating the neuropathology of SUDEP.  We have recently employed two new employees to work as part of our Epilepsy Deaths Register. We are now in a position to reach more coroners and bereaved families and promote participation in research”.
The nine research teams that will benefit from the funding will work on a range of research questions including identifying bio-markers and predictive tools of individual risk. One of the teams will be looking at identifying genes that contribute to SUDEP and test candidate drugs that may reduce the risk of unexpected death. 

Stephen Brown, Chair of SUDEP Action commented: “This is wonderful news for research into SUDEP.  Families are acutely aware, from their own experience, that there are major barriers to translating knowledge from research into clinical practice.  SUDEP Action will continue to work hard to tackle these barriers. Population-based studies since 2002 as well as individual reports from coroners continue to flag up that deaths might be avoided if there was an appreciation of the main risks of fatality and access to existing interventions.”
For more on the SUDEP Center Without Walls
Also see article UCL and charities welcome $5.9 million boost to UK efforts to tackle SUDEP in people with epilepsy