SUDEP Action

Making every epilepsy death count
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The Wales Epilepsy Research Network

The Wales Epilepsy Research Network (WERN) is supporting SUDEP Action’s national register of epilepsy-related deaths, and sees this as a major opportunity to understand better the epidemiology and the preventable risk factors of this tragic outcome.

WERN has strong existing databases of epilepsy patients attending specialist clinicians in Wales and has been active in investigating sudden deaths in epilepsy. Unexplained and unexpected deaths are too common in epilepsy and are a powerful motivation behind people volunteering to help us at WERN; both for our family genetics projects and for our patient research and development group.  

In particular, we are grateful to SUDEP Action for financial support of work to identify and confirm impaired adherence to antiepileptic medication in the weeks before death—through measurements at post mortem of medication concentrations in hair. Members of WERN are pleased to have the opportunity to contribute to a national database that promises to be the springboard to preventing epilepsy-related deaths in the UK and beyond. 

Williams J, Lawthom C, Dawson T, Wilson JF, Kerr MP, Dunstan FD, Smith PEM.  Antiepileptic medication compliance in sudden unexplained death in epilepsy (SUDEP):  assessment using hair analysis. Journal of Neurology, Neurosurgery and Psychiatry 2006;77:481–484. PMID: 16543526.