UCB has an established 30-year leadership in epilepsy, serving 3 million patients globally. Our current portfolio of medicines helps people living with epilepsies and rare syndromes. One area where we believe it’s important to raise awareness is in the sudden unexpected death in epilepsy (SUDEP), which is the leading cause of epilepsy-related deaths.

What Is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a healthy person living with epilepsy dies for no known obvious reason.¹ It is an unimaginable outcome to a caregiver or parent. Although it can happen to anyone living with epilepsy, there are certain factors that increase the risk of occurrence such as frequency of generalized tonic-clonic seizure (GTCS) and failure to adequately control treatment-resistant seizures.² While no one knows exactly what causes SUDEP at this time, respiratory dysfunction, irregularities in heart rhythm, abnormalities in brain function, including irregular EEG patterns, and seizure-induced hormone and metabolic changes have been suggested as potential causes.¹ What we do know is seizure control is one way to reduce the risk of SUDEP.³

The Facts

The risk of dying is up to 3 times higher in people with epilepsy than in the general population.⁴ Providing patients with information about the risks associated with their condition can help them make informed decisions about their treatment and care. Discussion with their physician on lifestyle behaviors, such as medication adherence and substance abuse, as well as how to monitor seizures, particularly at night, and awareness of outcomes of SUDEP might reduce morbidity and mortality from epilepsy.¹ In New York, Senate Bill S67A⁵, signed by the governor in August of 2022, requires healthcare practitioners to provide patients they are treating for epilepsy that have an elevated risk for SUDEP with current and evidence-based information about SUDEP and to connect them with nonprofit organizations that can offer further assistance and support. These conversations can help change the landscape of patient care in neurology and save lives.

UCB Works to Further Understand SUDEP

We believe in the power of partnerships and collaboration. By unleashing the power of complementary digital health technology, we seek to transform lives using connected care platforms and seizure detection devices in epilepsy. By strategically partnering and investing in meaningful relationships with organizations that have the technology and data capabilities, we can further drive our healthcare transformation in the most impactful way. 

UCB is proud to support Neurava, a medical device startup leveraging groundbreaking epilepsy research to develop new wearable solutions for patients with epilepsy. Neurava is 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. Because studies suggest that roughly one out of every 1,000 epilepsy deaths are a result of SUDEP every year,⁶ a device like this has the potential to save lives in the future. 

Another example of how UCB partners across the ecosystem is with the Child Neurology Foundation on their Clinical Toolkit for Preventing Epilepsy Deaths. UCB participated in an advisory workgroup with the Child Neurology Foundation, along with 20 other organizations over the past year, to create resources raising awareness on potential causes of death among people with epilepsy to help individuals take preventative measures to decrease the risk. The goal of this toolkit is to educate patients and HCPs about epilepsy and address epilepsy mortality risk factors. The site is now live to aid in helping physicians discuss preventative measures and access to effective treatments with their patients.  

"While there is still so much we need to learn about SUDEP, you can reduce the risk of SUDEP by talking with your care team about your risk factors, taking medications as prescribed, and exploring alternative treatment options if you are not responding to your current medication." Amy Brin, MSN, MA, PCNS-BC, Child Neurology Foundation CEO and Executive Director

As we continue to advance our understanding of human biology and neurological disease, we aim to drive breakthroughs in science, specifically targeting the underlying pathology of seizures in the hopes of reducing the major risk factors for SUDEP. Our passion, dedication and curiosity continue to fuel the future with a keen focus on creating moments that matter to people living with epilepsy and rare syndromes.

References

1. Cure Epilepsy. What is SUDEP? https://www.cureepilepsy.org/signature_programs/sudep-sudden-unexpected-death-in-epilepsy-overview/ 
2. Cross JH, Galer BS, Gil-Nagel A, et al. Impact of fenfluramine on the expected SUDEP mortality rates in patients with Dravet syndrome. Seizure. 2021;93:154-159.
3. 5 Things You Should Know About SUDEP. https://www.cdc.gov/epilepsy/communications/features/sudep.htm 
4. How serious are seizures? Will a person with epilepsy die earlier than a person without epilepsy? https://www.epilepsy.com/what-is-epilepsy/understanding-seizures/how-serious-are seizures#:~:text=clusters%20of%20seizures.-,Will%20a%20person%20with%20epilepsy%20die%20earlier%20than%20a%20person,Forsgren%20et%20al%2C%202005
5. Senate Bill S67A: Relates to information provided to patients and health care practitioners regarding sudden unexpected death in epilepsy https://www.nysenate.gov/legislation/bills/2021/S67#:~:text=This%20legislation%20would%20require%20health,offer%20further%20assistance%20and%20support. 
6. Harden C, Tomson T, Gloss D, et al. Practice Guideline Summary: Sudden Unexpected Death in Epilepsy Incidence Rates and Risk Factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Epilepsy Curr. 2017;17(3):180-187.
    

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