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Genetics research brings prevention of epilepsy deaths one step closer

Collaboration between SUDEP Action’s Epilepsy Deaths Register and the Epilepsy Society Brain and Tissue Bank has brought the prevention of epilepsy deaths one step closer.

The Epilepsy Deaths Register is a single point for reporting all epilepsy-related deaths in the UK and has already attracted over 310 registrations since launching less than a year ago. The register has enabled Bereaved families to help research teams with vital information and consents after a death. The Epilepsy Society Brain and Tissue Bank, a joint initiative of University College London and the Epilepsy Society, will provide a unique opportunity to advance medical research by making access to tissues that are necessary for research into epilepsy easier.

Professor Sanjay Sisodiya leading the tissue bank commented: “SUDEP Action is uniquely placed because of the Epilepsy Deaths Register to raise awareness of tissue donation with both recently-bereaved families and with coroners and to provide a support service. We are collaborating with The Epilepsy Deaths Register so that bereaved families can be well supported to contribute to research”

The tissue bank will help epilepsy research. Epilepsy is a common serious neurological condition, enormously burdensome for patients and society and yet under-resourced in research. What happens when the brain becomes susceptible to seizures and why some people die is not understood.

Jane Hanna OBE said: “Increasing our understanding of genetic risk factors is as important as understanding clinical and behavioural risk factors. If we need the help of bereaved families and coroners, it is vital that the process is simple and coordinated and is supported. This new collaboration between The Epilepsy Deaths Register and the Epilepsy Society Brain and Tissue Bank means we should meet this challenge. We need funding to maximise this opportunity.”

Bereaved families who decide they want to help genetics research may consent to donate post mortem tissues for research. SUDEP Action is working with the Epilepsy Society Brain and Tissue Bank to make this happen. 

The continued success of the tissue bank will be greatly helped by new donations of tissues either from patients undergoing epilepsy surgery or from people who have died. Legislation requires bereaved families to consent to donations, so awareness by coroners and bereaved families about the importance of genetics research is vital.  

For more information on the Epilepsy Brain Bank visit the Epilepsy Society website