A research team at UCL Institute of Neurology is one of nine projects who will receive funding totalling $5.9 million, over five years,
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. Maria 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.
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.
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