UCL and charities welcome $5.9 million boost to UK efforts to tackle SUDEP in people with epilepsy
A research team at UCL is one of nine projects to share $5.9 million from US government to speed up the pace of research into Sudden Unexpected Death in Epilepsy (SUDEP). The announcement comes at the same time as two of the UK’s epilepsy charities have invested major funds in essential infrastructure to support this research.
Combining one of the world’s largest collections of brains from individuals who have died from SUDEP with tissue collected from individuals undergoing epilepsy surgery, Dr. Thom and her colleagues at Epilepsy Society Brain and Tissue Bank, based at the UCL Institute of Neurology, will use a variety of techniques to examine the brain in SUDEP, and with US colleagues in the Center for SUDEP Research will also look at the role of two chemicals, adenosine and serotonin, in SUDEP.
Community promotion and support for bereaved families and coroners will be provided in the UK by SUDEP Action’s Epilepsy Deaths Register and in the US by the SUDEP North American Registry. Epilepsy Society, which established the Epilepsy Society Brain and Tissue Bank in 2013, will lead on promoting the initiative with people living with epilepsy in the UK.
Seizures are common, affecting almost 1 in 20 people. Epilepsy-related death occurs at a younger age than in most other conditions. Epilepsy is the fifth leading cause in males, and eighth in females, of avoidable years of life lost. Causes of death include accidents, suicide, status and Sudden Unexpected Death in Epilepsy (SUDEP).
Each year, SUDEP occurs in 1 out of 1000 people with epilepsy, often in people between 20 to 40 years old. SUDEP refers to deaths with no known causes in individuals with epilepsy. In the UK, it is estimated that there are 600 deaths a year from SUDEP. Current efforts are focused on risk reduction through control of seizures, but there are no proven prevention strategies.
The UCL team is one of nine groups of scientists who will receive funding totalling $5.9 million, over five years, to work together on increasing the understanding of SUDEP.
Maria Thom who leads the research team at UCL said: “This funding from the United States means we can speed up our efforts to prevent SUDEP deaths. This injection of funding from the US will enable us to make best use of our valuable resources, working with SUDEP Action and the Epilepsy Society.”
Karen Osland from SUDEP Action said: “These deaths are sudden and, like cot deaths, are traumatic. Families want answers. Funding raised by bereaved families in the UK has been used to establish an Epilepsy Deaths Register that can provide a supportive environment for families to help research, and can coordinate work with coroners. We are delighted to work closely with the team at UCL.”
Angela Geer, Epilepsy Society's chief executive said: "This is an exciting project combining our research with that carried out in the United States and a huge opportunity to understand more about epilepsy related deaths. The sooner we can turn our research into clinical practice the sooner we can save lives."
For information on the SUDEP Center without Walls (NIH initiates “Centers Without Walls” to study sudden unexpected death in epilepsy)