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Sudden Unexpected Death in Epilepsy: our commitment to supporting families and patients

Posted by
Judith Luker, Patient Engagement, Epilepsy and Rare Syndromes

SUDEP, or Sudden Unexpected Death in Epilepsy, refers to the unexplained death of a person with epilepsy who is otherwise healthy. It is a leading cause of epilepsy-related deaths. SUDEP Action Day, created by the charity SUDEP Action in 2014 and observed each October, plays a crucial role in raising awareness about this silent but deadly consequence of epilepsy bringing organisations worldwide together to help increase awareness of SUDEP and empower people with epilepsy.

While no one knows exactly what the mechanisms are when SUDEP occurs, there are certain factors that increase the risk of occurrence, such as the frequency of generalized tonic-clonic seizure (GTCS) and failure to adequately control treatment-resistant seizures. Research has shown that controlling seizures may lower the chance of SUDEP.

Although significant progress has been made during the past year in the understanding of SUDEP mechanisms and investigation of numerous potential biomarkers, we are still missing reliable predictors of SUDEP beyond the well-established clinical risk factors. To patients and families, SUDEP is an unthinkable aspect of living with epilepsy, and this is why we are committed to supporting the patient community on SUDEP-related issues in every way we can. We are investing in SUDEP research and are working to contribute further to the published literature in this area. We are also collaborating with other organizations on projects relevant to SUDEP; our work with Neurava, a medical device start-up, is a good example. Neurava is working on translating the discovery of a potential mechanism of action behind SUDEP into a first-of-its-kind smart wearable device capable of identifying and alerting for seizures and impending SUDEP risk - a device with the potential to save lives, and which we are proud to support in its development.

In another recent collaboration, UCB participated in an advisory workgroup with the Child Neurology Foundation in the US, along with 20 other organizations, on its Clinical Toolkit for Preventing Epilepsy Deaths. This toolkit includes resources raising awareness of potential causes of death among people with epilepsy to help individuals take preventative measures to mitigate the risk, as it is known that many epilepsy deaths could be prevented. The goal of the toolkit is to educate patients and healthcare professionals about epilepsy and address epilepsy mortality risk factors. On the Preventing Epilepsy Deaths toolkit website physicians can find materials to help them discuss preventative measures with their patients.

This year’s theme for SUDEP Action Day is #MySafetyMatters – highlighting how important it is that the epilepsy community takes action to help people with epilepsy to live as safely as possible. Putting the patient’s voice first is an important part of working at UCB and central to my role. Working closely with patients and patient organisations to understand their feelings about how the SUDEP conversation should happen, has deepened my understanding of this incredibly important and sensitive topic. At UCB we have a responsibility to do as much as we can to advance the conversation around SUDEP research, preventative care, and the needs of families.

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