The newly established Epilepsy Society Brain and Tissue Bank will provide a vital research donation facility and central resource to support research into epilepsy and accelerate the development of new treatments and cures.
More than half a million people in the UK have epilepsy and a third have seizures that cannot be controlled through anti epileptic drugs. There are around 1,000 epilepsy related deaths each year.
Professor Sanjay Sisodiya, who leads the genetics research at Epilepsy Society said: “Research into epilepsy represents the best hope of finding a cure. Other conditions such as Alzheimer’s disease and Parkinson’s have large tissue banks dedicated to research which have proved extremely valuable. Up until now there has been no dedicated point of contact for patients or next of kin who wish to donate brain tissue for epilepsy research.”
The facility, at the National Hospital for Neurology and Neurosurgery at Queen Square in London, will be overseen by consultant neuropathologist Dr Maria Thom and managed by Gabriella Wright. Epilepsy Society already has a unique collaborative arrangement for its MRI and genetics research work with University College London and the Institute of Neurology.
Dr Thom said: “A really important part of this project is promoting awareness of the facility, particularly among pathologists and coroners. In many instances valuable brain tissue is not collected at the time of death simply because there is no information regarding a route for donation. For Sudden Unexpected Death in Epilepsy (SUDEP) this is a particularly acute and sensitive issue. We will also be setting up a donor registry system for patients or next of kin who wish to donate tissue for research.”