À PROPOS DE CET ÉPISODE
Join Dr. Marawar in a conversation with Dr. Hannah Pickard and Dr. Laura Lubbers as they discuss the article, "Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy.
Click here to read the article.
This podcast was sponsored by UCB.
We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage.
This episode covers a 2026 Epilepsy Currents Current Review by Pickard et al., an international consensus setting out a unified research agenda for sudden unexpected death in epilepsy (SUDEP). Host Dr. Rohit Marawar speaks with Dr. Hannah Pickard of the Epilepsy Research Institute UK and Dr. Laura Lubbers of CURE Epilepsy about how two national workshops held two weeks apart converged into a single set of shared priorities, and what those priorities ask of clinicians, researchers and funders. They discuss what a neurologist can do at the next clinic visit to reduce risk, the role of medication access and adherence, how to counsel patients about seizure detection devices, why the field still cannot agree on what constitutes a SUDEP animal model, what large-scale linkage of epilepsy data across healthcare systems could reveal about time-varying risk, and why the persistent gap between SUDEP guidelines and everyday practice may be the most addressable problem of all.
Key takeaways:
1. Two independent efforts became one consensus: the Epilepsy Research Institute held a UK SUDEP workshop in 2024 and CURE Epilepsy held a parallel US workshop two weeks later, each unaware of the other. They merged their findings with the earlier Epilepsy Foundation SUDEP Summit over 12 to 18 months, with people with lived experience and bereaved families involved in every convening.
2. The agenda spans three domains: clinical (risk factors, personalized risk prediction, harmonized healthcare data, wearables, access disparities), preclinical (standardized models with common data elements, shared databases and tissue repositories, open-access collaboration), and awareness and education (clinician and public education, standardized discussion tools, registries and routine reporting, bereavement support).
3. Three things a clinician can do now, per Dr. Pickard: optimize seizure control, since generalized tonic-clonic seizure frequency remains among the strongest risk factors; raise SUDEP with every patient rather than only those who look high risk, because risk fluctuates; and use a structured tool such as SUDEP Action's SUDEP and Seizure Safety Checklist, shown to reduce individual risk factors. It should be a repeated conversation, not a one-off.
4. Medication adherence matters and poor access raises risk, but SUDEP also occurs in adherent patients. Devices should be chosen with a clinician by seizure type, may help most with nocturnal seizures, and have not yet been shown to improve survival.
5. The preclinical bottleneck is a definition problem. MORTEMUS showed people die after the seizure from respiratory and cardiac change, while lab animals usually die during the convulsion, so models may capture the wrong phase; CURE Epilepsy's common data elements aim to standardize protocols and reporting. Asked what would get us to a solution first, Dr. Lubbers chose awareness over any mechanism, noting families want to know, can act on it, and cope better with grief when informed.
Rohit Marawar, MD, FAAN, FAES (Host): One of the toughest phone calls a neurologist is likely to get is that their patient with epilepsy has suddenly passed away, likely from sudden unexpected death in epilepsy, commonly known as SUDEP. Across the general epilepsy population, SUDEP happens at a rate of roughly 1.2 per 1,000 patients per year. In developmental and epileptic encephalopathies such as Lennox-Gastaut syndrome and Dravet syndrome, among others, it is markedly higher, on the order of three to eight per 1,000 patients per year. And in that group, it accounts for roughly half of all deaths. Most of these deaths come without warning, and most happen at night.
Today, we are talking about what it would take to change those numbers and about a group of researchers, clinicians, organizations, and bereaved families on both sides of the Atlantic who sat down together to work that out.
Welcome to the Epilepsy Currents podcast, the podcast for Epilepsy Currents journal, exploring the latest research and expert commentaries from the world of epilepsy. UCB is the proud sponsor of Episode 13 of Epilepsy Currents podcast. I'm your host and Associate Editor for the podcast, Dr. Rohit Marawar. Today, we are discussing a current review published in Epilepsy Currents earlier this year, titled "Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy."
I'm joined today by two of the paper's authors. Dr. Hannah Pickard is the paper's lead author and joins us from the Epilepsy Research Institute in the UK. Welcome, Dr. Pickard. And then, we have Dr. Laura Lubbers, who is the paper's senior author and Chief Scientific Officer at CURE Epilepsy.
Welcome, Dr. Lubbers. Great to have you both with us. Before we get into the paper, I would like each of you to say a little about your organization and your own role in this work. Why don't we start with you, Dr. Pickard?
Hannah Pickard, PhD: Yeah, of course. My name is Hannah. I'm the research partnerships lead at the Epilepsy Research Institute UK. And at the Institute, our mission is to radically advance research into the causes, prevention, and treatment of epilepsy and its associated conditions. And we do this through a number of different routes by funding research, driving strategic investment, and also advocating for the research priorities of people affected by epilepsy.
And my specific role in bringing this paper together was really to manage the consensus process and bring the group together to discuss and draft our shared priorities for SUDEP. And I just want to say thank you so much for having me on the podcast. I'm really excited to join you both.
Host: Wonderful. Dr. Lubbers?
Laura S. Lubbers, PhD: Thank you, Dr. Marawar. CURE Epilepsy was founded in 1998 by parents concerned about the lack of knowledge about what causes epilepsy. They set out on a mission to fund research that would get to the root causes of epilepsy as a way to find better treatments and, one day, cures for epilepsy. Our focus on SUDEP started in 2004 when a bereaved parent named Jean Donalty challenged us all to learn more about this devastating outcome of epilepsy after she lost her son, Christopher.
In my role, I've been able to continue to build on these efforts by expanding our research portfolio focused on SUDEP, and have been honored to work closely with Dr. Pickard on the paper published earlier this year. We're excited to be here today to talk about the progress that's been made on epilepsy and SUDEP research.
Host: Thank you. Let's start with the questions. So first, a question for both of you. How did the consensus process start and develop? Were people living with epilepsy and their families involved? We can start with you, Dr. Pickard
Hannah Pickard, PhD: Perfect. Thank you so much. So, this consensus process really started all the way back in 2024 for the Epilepsy Research Institute, where we held a workshop that brought together researchers, clinicians, charities, bereaved family members, and people affected by epilepsy to discuss research priorities for SUDEP.
From this workshop, we, as the institute, began developing a paper outlining key priorities for SUDEP research in the UK, and we were working alongside researchers, bereaved family members, and the charity SUDEP Action to deliver this paper. And then, maybe I'll hand over to Laura to give a bit of a background on the different workshops that happened, and then I can touch on the consensus after.
Laura S. Lubbers, PhD: Absolutely. So simultaneously, in the US, CURE Epilepsy was developing a very similar workshop focused on SUDEP risk prevention and assessment. We held that in the fall of 2024, just two weeks after the workshop held by the Epilepsy Research Institute. Those different convenings were really developed in isolation.
But when we found out about each other, we thought, what a great opportunity to bring our learnings together and also bring in learnings from a previous workshop called the SUDEP Summit that was hosted by the Epilepsy Foundation back in 2020, 2021 timeframe. So, there were a number of convenings that had happened, but they all had a very similar outcome. And we all were coming to the same consensus.
So, we decided to join forces with the Epilepsy Research Institute and summarize the outcomes of the workshops and included our partner organizations, namely Partners Against Mortality in Epilepsy, or PAME in the US, and SUDEP Action and the Centre for Global Epilepsy in the UK, who are all interested in the same topics.
And the manuscript summarizes the convenings held by those different groups. Critically, all of the convenings did include people with lived experience, but I'll let Hannah talk more about how the consensus was developed.
Hannah Pickard, PhD: Yeah, absolutely. So, as Laura said, we were holding these workshops separately, and then Laura and her team reached out to us to discuss putting together a consensus paper that showcased some of our shared priorities across the UK and the US. And then, really, that process evolved over a 12 to kind of 18-month period starting in early 2025, where we held several meetings to discuss priorities and really reach a consensus on the recommendations which you can see outlined in the paper and we'll discuss more today
Host: Thank you. So, Dr. Lubbers, can you give an overview of the different components of this consensus document?
Laura S. Lubbers, PhD: Yes, absolutely. We synthesized the priorities into three different key domain areas: clinical research, preclinical science, and awareness and education. The clinical priorities focused on improving identification of modifiable and unmodifiable risk factors. Also, developing personalized risk prediction tools, harmonizing healthcare data systems, and expanding the use of healthcare records. Also, investment in wearable technologies and addressing disparities in access to healthcare and anti-seizure medications were part of the recommendations.
For the preclinical priorities, we emphasized uncovering the biological mechanisms underlying SUDEP through standardized animal models using common data elements, shared databases and tissue repositories, and coordinated international research efforts through open access platforms and shared infrastructure. We know that the number of groups working on SUDEP is relatively small, and we think that there is power in bringing them together.
In the area of awareness and education, we identified major gaps in communication about SUDEP between healthcare professionals, patients, and families. Solutions include education for clinicians, government agencies, caregivers, and the public, along with standardized tools to facilitate those discussions and improve reporting practices. The consensus agenda calls for better surveillance systems, stronger registries, and routine SUDEP reporting and timely support for bereaved families.
Overall, we'd like to see a more coordinated international strategy combining research, education, data sharing, and policy initiatives to accelerate SUDEP prevention, improve risk assessment, and ultimately reduce epilepsy-related deaths worldwide.
Host: Thank you. Dr. Pickard, so there is a neurologist listening to this conversation who has clinic tomorrow morning. Based on what we know about SUDEP risk, what actions could help reduce the risk for patients?
Hannah Pickard, PhD: Based on what we know about SUDEP risk and the available research evidence that we have, there are a few ways that neurologists can help reduce their patient's risk of SUDEP.
Firstly, I would say there needs to be a big focus on prioritizing seizure control. We know that one of the strongest risk factors for SUDEP is the presence and frequency of generalized tonic-clonic seizures and poor seizure control. So, neurologists should really focus on optimizing treatments where possible and improving medication adherence to reduce risk in the first instance.
Secondly, I think it's really important for neurologists to have routine conversations about SUDEP with their patients to support them to understand the risks of SUDEP, both the modifiable, as Laura mentioned earlier, and the non-modifiable risk factors that are associated with SUDEP, which go hand in hand are equally as important as each other. We know that having these conversations will help patients understand whether they might be at risk at a particular point in time, and also support them to take the steps to reduce their risk where possible.
And lastly, I would say it's incredibly important for neurologists to, where possible, use available tools that can help support meaningful conversations about risk with patients. There are several available tools out there, one of which we mention in the paper is the SUDEP Action, SUDEP and Seizure Safety Checklist. And research shows that using structured tools like this can lead to reductions in risk of SUDEP for patients.
So, these are just a few suggestions, guided by research and guided by our discussions throughout this consensus process that could really help reduce risk for patients.
Host: Dr. Lubbers, I want to ask about something less biological. So, how much of this comes down to whether a person can get access to their anti-seizure medications?
Laura S. Lubbers, PhD: Well, that's a complicated question with many facets to consider, but I'll touch on a few. So, it goes without saying, and as Hannah has already said, medication adherence is critical for reducing and hopefully eliminating seizures. A lack of medication adherence, whether it's due to lack of access to medications or other reasons, has been tied to an increased risk of SUDEP.
But research also shows that SUDEP can occur in people taking their medications. So, that alone doesn't explain entirely the occurrence of SUDEP, and more research is needed on this. But certainly, taking medications and being regularly seen by a healthcare professional are important steps. Many pharmaceutical companies have patient assistant programs to help people afford their medications if they're not able to. And if medications aren't controlling seizures, talking to their healthcare professional about other ways to control seizures, like implanted devices and other types of surgery, is recommended, as already alluded to.
Host: And as a follow-up to that question, moving from anti-seizure medications to seizure detection watches and devices, when someone wonders whether a seizure detection device will keep them safe, what can you tell them?
Laura S. Lubbers, PhD: I would say before buying a device, it's really recommended that patients speak directly with their healthcare professional and discuss their seizure type because not all seizure detection devices detect all seizures types. It's really important to do that as a part of discussing their seizure action plan. Devices may be particularly helpful for people who have seizures at night. As we know, SUDEP often occurs at night and when somebody is unattended.
There's evidence that when somebody is available to support the person having seizures, that they may be able to prevent SUDEP from occurring. Devices that are enabled to alert somebody may be particularly helpful in this circumstance, and many devices are being developed, but their effectiveness at keeping people safe is still being studied. Again, patients should talk to their doctors to ensure that they have a seizure action plan that may include the use of seizure detection devices.
Host: Thank you. Dr. Lubbers, here is something that might be surprising to many of us. After all these years, the field still cannot agree on what counts as a SUDEP model. Why is that so hard?
Laura S. Lubbers, PhD: Well, relatively speaking, the study of SUDEP is still in its relatively early stages. Science research takes a long time, and scientists are still debating what defines a SUDEP model that accurately reflects SUDEP in humans. I'll give you some background information on that.
Initially, we didn't understand what happens biologically to a person who experiences SUDEP. But one landmark study called the MORTEMUS study showed that people don't actually die during the act of convulsion, but after the seizure due to changes in breathing and cardiac function. function. However, in laboratory settings, animals almost always die during that act of seizure, which means that the model isn't capturing the right phase of the tragedy. This needs to be refined. Given the relatively small size of the MORTEMUS study, though, we are still trying to understand if the changes in respiration and cardiac function really reflect what's happening in the broader group of people who experience SUDEP.
Also, understanding and accurately modeling the biology to create relevant animal models takes time, iteration, and consensus. Compounding this, different laboratories use different methods and reporting. Some researchers use chemicals as seizure triggers, some use loud noises to trigger seizures, and others use other approaches. Because someone is starting their experiments differently, it's really hard to compare the results from different studies fairly.
The research community hasn't had a consistent way of describing their study protocols or outcomes. But recently, Cure Epilepsy conducted a project to define what are called common data elements for SUDEP to help researchers with a standardized way of reporting their studies and outcomes. And we're encouraging all researchers to use these tools to move the research along faster. Researchers can find more information on our website at cureepilepsy.org.
Host: Following up on that question, you lay out several mechanisms for prevention and treatment of SUDEP. Now, if you had to bet, which one gets us to a solution first or which one are you most excited about?
Laura S. Lubbers, PhD: This really isn't actually a research answer. It's an awareness answer, as already been touched on. I think one of the simplest solutions is to ensure that people know about the possibility of SUDEP, regardless of its rarity, and take effective steps to mitigate it. Throughout the various convenings summarized in the paper, this was a theme.
Research shows that people with epilepsy and their families want to know about SUDEP and to be able to do what they can to prevent it. This could mean taking measures to reduce and hopefully eliminate generalized tonic-clonic seizures, which Hannah has already mentioned are a significant risk, ensuring medication adherence and have seizure action plans.
Research also shows that families who are aware of SUDEP manage their grief more effectively if it does happen to their loved one.
Host: Moving on to you, Dr. Pickard. If we were able to connect epilepsy data across healthcare systems at scale, how could that transform our understanding of SUDEP risk and prevention?
Hannah Pickard, PhD: I think this is a really interesting question, and I think connecting epilepsy data across healthcare system could be incredibly transformative to what we can understand about SUDEP risk and prevention.
So firstly, I think, connecting data across these different systems at a population level. For example, data on seizures, data on medications, data on clinical history, and other risk factors, could really help us understand more about the development of personalized risk prediction tools for individuals who are at risk for SUDEP.
Understanding when an individual is at risk and how we can best prevent that from happening at that particular time, because we know risk isn't static for these individuals. It can also help us to better understand how different risk factors for SUDEP might interact with each other as well, and which patterns are associated with the highest risk at particular time points.
Another way that kind of better connected data could help us is to really understand how different factors like barriers to care, medication access, as Laura's touched on, and also socioeconomic factors like education and poverty influence SUDEP risk. Fortunately, SUDEP is a rare occurrence. And because of its rarity, it can be challenging for researchers to answer important questions about SUDEP risk and prevention. So, connecting data across different healthcare systems will be essential to help accelerate progress in research.
Host: Thank you. Dr. Pickard, only about one in five epilepsy professionals in the UK brings up SUDEP with patients, and the numbers are somewhat similar in the US, even though the guidance says that they should with every visit or every new patient. What is going on here?
Hannah Pickard, PhD: So, just to provide a little bit of background to the guidelines that are in the UK and the US. So in the UK, the guidelines state that SUDEP risk should be discussed following an epilepsy diagnosis. And I believe in the US, clinical guidelines recommend discussing SUDEP within two medical visits following diagnosis. But as we've reflected on in many conversations, in practice, this differs from state to state in the US. However, as you say, there still remains a gap between the guidelines and what happens in practice. And I think, there are several factors that could be contributing towards this.
So firstly, as we know from research, many epilepsy professionals may be understandably concerned about causing anxiety or distress by raising a topic that involves the risk of death. Despite this, it is incredibly important to have these conversations with all patients, whether they are high risk or low risk for SUDEP. As we know, and as I've mentioned before, risk can fluctuate over time.
Secondly, some epilepsy professionals may class patients as low risk because they perhaps don't exhibit the most commonly recognized risk factors for SUDEP. And as a result, the professional may feel that mentioning SUDEP isn't necessary for that particular individual. But we know that risk is not static, and an individual's circumstances can change over time, which is why ongoing conversations about SUDEP are really important for all patients as a matter of routine care.
Finally, one other kind of thing that's come out of the research is that time pressure is a big factor. So, time pressures within clinical practice can make it challenging to have detailed conversations about risk and safety with patients. And when appointments are short and multiple topics need to be addressed, discussing SUDEP may not always be prioritized by specialists.
We know, obviously, as we've mentioned in the question, there remains that clear gap between what guidelines recommend and what happens in routine practice. And I think to close that gap, we will need better training and education for healthcare professionals, which comes through all the way in our paper, and this could be through things like learning modules.
We also know that we need research to better understand the barriers that affect how risk is communicated to patients in that setting. And we also need wider use of tools that help facilitate meaningful conversations about SUDEP with patients as well.
Host: Thank you. Following up and a similar kind of a question, and you touched upon it briefly. Any suggestions on how clinicians can bring up the conversation at this point and do it well?
Hannah Pickard, PhD: Yes, absolutely. There are a couple of suggestions that have come through in a number of the meetings that we've had and the workshops that we've had as the Epilepsy Research Institute in the UK.
So, I think, to help support conversations with patients, clinicians can use tools that I've mentioned already, such as the SUDEP Actions, SUDEP and Seizure Safety Checklist, which is a robustly research tool that can support clinicians with conversations about SUDEP and risk screening. We know that using structured tools like this can make it easier to introduce the topic of SUDEP with patients. It can also help with kind of personalizing the discussion around the patient's specific risk factors that they're exhibiting. And we know that tools like this can also help with creating an action plan with patients to support them to reduce their risk outside of the clinic. And research has shown that tools like this can lead to reductions in risk. So, it's really important for clinicians to consider the available tools that they have at their hand. And if not, research the tools that they may not have seen yet or know about.
And then, kind of stepping away from the clinic setting, clinicians can also provide patients and families with leaflets and other reliable information that they can review in their own time. We know that discussions can be overwhelming, and we know that people may need more time to review and absorb information. So, providing that time and space to absorb information at home to bring questions back to the clinic is really important as well.
And I guess I just want to end on this question by saying, I think the most important thing is that discussing SUDEP should not be a one-off conversation. We know it should be revisited regularly in clinic with patients during routine reviews to make people aware of their current risk of SUDEP.
Host: Last one, and I would like to hear from you both. Everything in this consensus, what is the one thing you want to see happen in the next few years? And Dr. Lubbers, maybe we can start with you.
Laura S. Lubbers, PhD: I would like to see the research and funding communities continue to invest in understanding the factors that contribute to increased risk of SUDEP and identify ways to mitigate them. This knowledge will help foster a more accurate understanding of SUDEP, and we hope will encourage the discussions, the necessary discussions between healthcare providers and people affected by epilepsy, including their families, to understand and take steps to prevent SUDEP.
Host: Dr. Pickard?
Hannah Pickard, PhD: It's difficult to choose one thing from the paper that I would like to see happen because I think they are all equally important. But the one thing that I would like to see happen over the next few years is for the rates of SUDEP to decrease. And I think in order to do this, we're going to need more research to better understand the risk factors associated with SUDEP so that we can design better prevention strategies. We're going to need healthcare professionals to feel confident and supported in having these conversations with their patients.
And finally, we're going to need patients and families to be empowered with the information and support they need to understand and manage their risk appropriately.
Host: Thank you both for a thoughtful and, in places, a difficult conversation. For clinicians listening, the practical message is that the conversation about SUDEP is part of epilepsy care, not an optional extra, and all of us could do better. For families affected by SUDEP, stay strong. The fight against SUDEP is getting stronger.
Special thanks to our sponsor, UCB. For over three decades, UCB has been committed to people living with epilepsy and their families by leading in research, development, and treatment innovation. Past breakthroughs are only a prologue to the future as UCB reimagines how they care for patients and their families. Learn more at ucbfcompass.com.
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