Good afternoon, everyone, and welcome to HRS 2025 and to this wonderful session that I've been so looking forward to. I am Sana Al-Khatib. I'm actually the program chair for this meeting, and it's my pleasure to welcome you to San Diego and to the meeting as well. I'd like to express my heartfelt thanks to every member of the Global Relations Committee. They work tirelessly on many different initiatives, including this wonderful global summit that you are about to experience, focused on a topic that's very near and dear to my heart, sudden cardiac death prevention. So I know that this is going to be a very exciting and interactive session, and I'll turn it over to the chairs. All right. Thank you so much, Dr. Al-Khatib. My name is Christina Miyake. I'm a pediatric electrophysiologist and the director of the Genetics Arrhythmia Program at Texas Children's Hospital. And on behalf of Eduardo Saad, who will be joining us shortly, he's in another session, unfortunately, I really, again, want to welcome you all to this session on this very important topic. It's really an opportunity for all of us within the EP community to talk about sudden cardiac death and to come together as a global leader in this area. In past years, we have, the Heart Rhythm Global Relations Committee has focused this summit on specific areas, different regions, but this year is the first time, and this is really exciting, that we're focusing on a topic. We have five key opinion leaders that are representing their regions and different speakers from around the globe. So the way that this is going to work is that it's broken up into two sessions. We're going to start with a case presentation of a cardiac arrest sudden death case. It's going to open up some discussions, and you're going to hear from leaders from each of the different regions, talk about sudden cardiac death, their challenges, their gaps, data from their area, and then we're going to come back, we're going to talk about the conclusion of that case, and we're going to open it up to a panel discussion. There'll be a quick break, and then in the second session, we're going to talk about some innovations and strategies in terms of how we, as a global community, can look at sudden cardiac death and begin to implement some changes together. So with that, I welcome you, and we will begin our session. Okay, so Dr. Andrew Kron is from British Columbia. He is one of our regional key opinion leaders representing North America, and he's going to give us our case discussion. Okay, thank you very much, Christina. It's a real privilege and honor to be here. I think when we were at the design phase of this, one of my reminders is that this has to be about patients. Patients and families, I'm going to emphasize in this situation because this is really about the recognition of risk, of prevention, of effective response, and then how we make a healthier, more aware population going forward. So I'll start with talking about Peter. So this case came to me a little while ago, but I have some outcome data that I think is helpful. He's a young, healthy guy. He occasionally has a cigarette. He has no medical history. He works in a light labor job, and what came out after all of this whole story transpired is that shortly before his tragic death, he had an episode of loss of consciousness. He was standing in the kitchen, lost consciousness, terrified his wife, who was present at the time, and she thinks he was unresponsive for a minute. Most of the time, transcripts would suggest this is an overestimate of the duration, and then recovers promptly. So classic arrhythmic syncope. And what came out afterwards is that he did three episodes kind of like this, but shorter and less concerning that had never come to medical attention, and they'd occur if there was any correlation. It wasn't while he was exercising, but after exercise. And this was all discovered afterwards when the question was, was he healthy? Had anything happened? Was there anything going on? And obviously, syncope is one of the index questions that we ask patients if they've had a cardiac arrest or sudden death. So the next morning, he takes his dog for a walk, typical daily routine, and he's found unresponsive by a passerby who was literally walking by and saw him on the sidewalk passed out and the dog nearby sort of sniffing at him. Called 911, our emergency response number, and the 911 operator actually tried to coach the person who did to do CPR, even though they'd never had any CPR training. And the ambulance with the emergency attendants came. The downtime was relatively long, probably estimated in the 9 to 12 minute range. He was in VF at the time, he was defibrillated. But ultimately, he ended up having an oxy-brain injury, and then withdrawal of care, and then death. He had an autopsy by a general pathologist, and the pathologist did not indicate any significant findings other than the typical findings of a prolonged downtime with a prolonged resuscitation, because they did try hard to get him back. So not surprisingly, actually, the most insightful people in this situation, besides the completely overwhelmed family members, are his parents, who, you know, this is never right to have your son or your child precede you, who went to their primary care physician and asked the question, why did this happen? Is it the kind of thing that's inherited? Could it have come from us, our his kids, or our other family members at risk? And the primary care physician then sent them to a cardiologist for a cardiac review for the parents, and that cardiologist was aware of our cardiogenics program that we have where I live in Vancouver, referred both the parents to us, and then ordered an echo and an ECG. So mom turns out to be athletic. She's a runner, and has been in perfect health. She has a little struggle with anxiety, so she takes a telepram, and she ends up with our screening testing. She has a normal borderline QT, but it normalizes with exercise. Her echo's also normal, and she has nothing on PVA. She had one PVC on 24-hour tape. So the father has an interesting story. So he has B-cell lymphoma. He's undergoing chemotherapy. His imaging, and we were missing a very original echocardiogram that had been done in another area of healthcare provision, showed a slight reduction in left ventricular function. He had an EFF of 45%. He's perfectly well. By the time we meet him, of course, he's utterly devastated and depressed. We had a normal ECG holter and a stress test. So that's the parental context in terms of where Peter comes from. Nothing else going on in the family. Peter has two kids. He has a brother with two kids, and that's the story. So I present this case because I think this, for this community and this topic and this question raises a number of different issues. And in fact, as I thought about this, there are more issues than fit on one slide, or the font would be 14 or something. So here are some questions for us to think about as a group over the next few hours. So in your environment, part of this is the question, because we hail from across the globe, is how do bystanders call for help? Does everybody have a cell phone? Are they able to contact the right emergency people in a timely way? What are the skill sets of a typical bystander? What's the penetrance of learning CPR? Can they find AEDs, which are the early response mechanism in an ideal public setting? And how often are AEDs populating places that are common? I noticed there's an AED sign outside this room. I thought that was kind of appropriate. Then how quickly will it arrive? If we were in those instances where you're now seeing emerging data about drone delivery, would a drone have made a difference in Peter's instance? What would your center do to work up Peter if he had presented with syncope prior to his death? And would that have picked something up? Do you have readily available services for all of these access of things? Can you cardiac MRI everybody? Are there long wait times? How do you handle the anxiety while people await clinical testing? And the fundamental question is, could we have prevented Peter's death? So the other issues, I think, are would everybody, would their coronial system or coroner system have undertaken an autopsy in Peter for an unexpected death? Are there instances where they would not have? There's a complex relationship between a coroner, a forensic pathologist, and a medical examiner, and health systems are different. And so the question is, within your system, how does that relationship work? And does that enable getting to the bottom of this, or does it, in fact, create barriers or typically not work? And how do the clinicians interact with those agencies? Because in some agencies, those are actually measures of legal system for foul play and not measures of medical examiners and forensic pathology. Do you have access to people who know how to ensure access to, for instance, retained biosamples that you could undertake genetic testing to subspecialty forensic pathology to look at specific things like, in our instance, cardiac pathology? And then the other system questions that we'll get to also in the second half have to do with your health system and how it works with respect to things like, is there public education around syncope? Does it happen in school? Or is the public aware? We all, well, I hope most of us have heard about stroke warning signs and early notification of that. We have code STEMIs and so on. Do we need code syncope? And could our arrest recognition and response system actually have saved Peter if we had had, for instance, I learned this morning that the new Google watch that's coming out will have a pulse-less detector. Could that have created early notification, drone deployment, emergency response deployment, and shortened the time from 11 minutes down to four, which probably would have led to a much better outcome? So I think these are the issues we want to think about how our global community but also your local system responds in the instance of both cardiac arrest and then sudden death and then the implications in this instance, for example, for family members. So I look forward to what's coming next, and I will have a little bit of discussion about how this all turned out at the end. Thank you. Thank you. Our next speaker is Dr. Sumit Chugh, and he's going to just discuss USA. Good afternoon, and it's great to be here at HRS San Diego. I think Andrew really put the issues in context, and what makes it harder and more complicated is that we're dealing with an individual, with Peter, who actually is at apparently low risk and has a cardiac arrest. So let's keep that in mind. As I speak, I'll try to come back to Peter a little bit as best as I can. So in the US, we're still dealing with at least 300,000 to 350,000 cardiac arrests annually, and the survival rate on average is no more than 10%. It varies across the nation. Still makes up 40% of all cardiovascular deaths, and 40% of cardiac arrests still manifest as the first sign of heart disease, and it's still not a reportable condition in the United States. And of course, we're all grappling with this. This is a global issue, that the primary prevention ICD is an amazing device, but it's now showing us diminishing returns, because in the general community, when we have common forms of cardiac arrests, whether it's ischemic cardiomyopathy or non-ischemic cardiomyopathy, there are major advances in heart failure therapeutics, guidelines, such that the number needed to treat is really increasing per year, and so the costs, if we continue like this, may no longer be sustainable. So if we're going to try to put Peter's unfortunate condition in context, let me share with you some data from our own work over the years. The picture above is Portland, Oregon, and this is Ventura County, California. We've been studying, for about 23 years now, a million people in Portland, Oregon, and 850,000 in Southern California, and the graphs on the right, in Portland, Oregon, and in California below, show as a percentage, sudden cardiac arrests by sex and age category. So whether it's Portland, Oregon, between the ages of 30 and 40, Peter was 33, or whether it's in California, this little subgroup is no more than 2% to 3% of all the cardiac arrests that actually happen. So how do we tackle this difficult scenario? The other thing that Andrew never told us was, we are realizing, more than ever now, that it's very important to be shockable when you present with a cardiac arrest, because you can do something about that. But when you're non-shockable, especially asystole, perhaps you can't do much. I'll show you something about PEA. So this paradigm shift is firmly with us, that no more than 30% to 40% of cardiac arrests that happen in the community are shockable. So even as we go reach for the AED, et cetera, there are other aspects that we have to keep in mind. And this is illustrated by some work we published a little while ago, where if you look at the orange line, this is ventricular fibrillation, annual incidence per 100,000 from the Oregon study. You can see that over time, the annual incidence has decreased from 2002 to 2017. But the survival from ventricular fibrillation continues to improve at 36.6%. On the other hand, both of these, the blue line PEA, the gray line asystole, are not significant in how they change. The survival for asystole stayed the same. But the survival for PEA surprisingly went up in this community. And we think that this had to do with how emergency medical response was evolving over time, going from intraosseous instead of IV epinephrine administration, all the way to mechanical CPR. So while we just think of EF, especially younger people who have PEA, and there are young people who get PEA, their survival is actually going up. If you look at this important target population, first manifestation of heart disease being cardiac arrest, the story is kind of sad. Because in Oregon, it was 37%. And over the years, it's still at 33%, not significantly different. And in the years we looked at, about six years in Southern California, about the same, 41%. So people are still a sizable chunk is presenting with first manifestation of heart disease. Well, Peter had symptoms. Well, what about symptoms? Well, if you look at it, this is also data from Oregon, where at least 50% to 60% of people have symptoms in the hours, days, weeks before their cardiac arrest. Could you do something about that? Well, it turns out most people who have symptoms just blow them away. Only 20% call 911. And 80% decide, oh, it's just something I ate or whatever. The ones who did call, at least in our study, had a five to six-fold higher chance of survival following resuscitation. So that's really important as well. But if everyone with chest pain or palpitations or syncope started calling 911, then the San Diego EMS would be paralyzed within an hour. So this is a study we did more recently, where we, for the first time, compared these people who called 911 and had a cardiac arrest to those that called 911 and didn't have a cardiac arrest. So we figured out that for men, chest pain is the most common. For women, it's dyspnea. And you know what? Syncope is nowhere to be found. Because syncope in the community, not in our EP clinic, but in the community, is very common. And vasovagal syncope takes over. So that's also a real problem when you think of this as a community perspective. So I want to end with this message, that as we are thinking, whether it's the US or all of us around the globe, there have to be new windows of opportunity that we want to work on. Yes, we will get better at improving the candidate who gets the ICD. But we really should think of near-term prevention in terms of people who are at least symptomatic. The ones who aren't are fresh out of luck for now. But if you're symptomatic, we can try to do something about it. And then, of course, early detection. If you're alone at home, and we'll hear about this later, and no one's going to call 911, well, something might call. We'll hear about that later. So just to answer a few questions in the end that Andrew posed, so what would your center do for Peter? Well, we'd examine Peter. We'd do an ECG, maybe an event monitor, maybe loop recorder. But he didn't have a family history. And that really puts Peter at a disadvantage. Do we have readily available testing? Yes. Was his death preventable? I would say yes, but by early detection, perhaps, and rapid response. Would he have had an autopsy? Yes. And what's the interaction between the clinicians and the medical examiner? I would say very limited. Do we have access to cardiogenetic expertise and testing? Yes. It's very good in the health system, but very poor in the medical examiner's office, where perhaps it should find a better home. What upstream measures? Well, maybe. But here, it would have been even hard to get somewhere with that. And could public arrest recognition tools? And yes, I think the answer is yes for that. Thank you very much for your attention. Thank you. Thank you. Thank you. From Canada, Dr. Julia Cagin-Torini from Montreal Heart Institute. Hear me well? Oh, yeah, perfect. It's a pleasure to be here and talk about, well, what we do with sudden cardiac death in Canada. So first, a couple of little things about Canada. It is a big country, as you probably all know about, but relatively low population with regards to its size. However, the whole population lives in the south thanks to this big rock called the Canadian Shield, and consequently, the same proportion of Canadians and Americans live in rural areas. And you'll see, we have a 10th of the number of sudden cardiac death that they have in the United States because we're a 10th less common. Healthcare in Canada, as you probably all know, we have public healthcare, a single payer system. But however, the healthcare is of provincial jurisdiction. So the principles are the same, but everything is different from a province to another, which makes things a little bit more difficult. One thing that I think is also different versus United States is that advanced resources are usually more concentrated in Canada in larger volume centers. So for example, in Canada or in Quebec, we have four electrophysiologists per million while they have three times more in United States. So I'm gonna link with the case and try to answer the question in Canada. So the first thing is how easily can bystanders find EED, and I think that's very tough in Canada. So the rates of being defibrillated by the bystander, as you can see, are low. There are maps that exist, private initiatives, but nothing really systematic. And as you can see, I was preparing the presentation in a hospital where they seem to be no EED. So I'm not completely sure of the reliability. How quick will an EED and EMS arrive? Well, it's better than if you are in an urban area versus a rural area. Nice data from Nova Scotia showed this, and also that the survival rate is twice as good if you're in an urban area because time is survival in cardiac arrest. Will drone change this? I think the big benefit of drones would be in rural area, well, not too remote, but just rural enough, where the benefit of survival, the benefit of time and survival would be the greatest. But there are simpler initiative in very densely populated area. For example, 10th of the cardiac arrests happen within 100 meters of a Tim Hortons, very Canadian, in downtown Toronto. Syncope and advanced workup. So what would we do for Peter, and are the different tests available? So probably depends on where he presented initially. So his primary care provider, the ER of the big hospital just after the fact, and what the results of initial tests would show. So if nothing shows on initial tests and he presented maybe to his primary care provider a couple of months after his syncope, he may not have had too much of a big workup. But if he presented to the hospital and the initial workup showed things that are concerning, he might have had a CMR. If there are suspicious finding on the CMR, he might have had genetic testing, and that may be something that would have saved him. Probably have had a loop recorder for these recurrent syncope, or an ICD if we had the results of CMR and genetic testing in favor, but that's probably less likely. In Canada, the problem, so we have access to all of this. The problems are sometimes delays in this public system, so we have to push when we think it's urgent. So then the next question, what happens after a sudden cardiac arrest? And what makes my explanation difficult is that the process is really not systematic in Canada. So I'm gonna concentrate on the two mostly most densely populated areas, Quebec and Ontario, which represent 25 million people. So first, the coroner is notified of an unsuspected death, and the coroners don't have to be doctors. So in most provinces, we have a coroner system. In some provinces, there is a medical examiner system such as Nova Scotia, and the medical examiner has to be a doctor. And then the coroner decides if an autopsy is indicated. In most of the cases of young with sudden cardiac arrest, this will be done. And then the pathologist will decide if cardiac pathology or genetic testing is needed. And then it differs a little bit between Quebec and Ontario. So in Quebec, the pathologist calls the Inherited Heart Disease Centre at Montreal Heart Institute and discuss with, discuss or send the report to one of the cardiologists to decide if we should do genetic testing. And then this is done through the molecular lab. Recommendations are made by the clinical team. And then from a letter, recommendations are made to the family by the coroner. And the reference is usually made to the cardiogenetics clinic if the genetic tests are positive. If the genetic tests don't show anything, I think the reference system is a little bit less systematic. In Ontario, the difference is that there is someone with specific genetic expertise within the coroner's office. So this director of post-mortem genetic program will decide himself if these tests need to be done and then make the recommendation according to the results. And the other thing is that they have someone specifically at the coroner's office, someone dedicated to communication with family over time and making sure they understand and making sure they make the referral directly to the cardiogenetics clinic. So there are a couple of challenges and I think good things that we do in Canada. So the investigation overall, when you look at all the provinces, is of variable quality. And this depends on the training of coroners, the excess and reference to cardiac pathology. We saw in Andrew's case that the case was not referred to cardiac pathology. So maybe was there something else that could have been found? Direct pathology-driven genetic testing is not standard. It's the case for Quebec, Ontario and Nova Scotia. And the retention of blood for DNA testing is very variable, meaning that if the family presents after a reference from the family doctor months or years later, there might not be DNA to do the genetic testing. And I think even in Quebec, where I feel it works relatively well, we are missing cases. And I think access to cardiogenetics expertise is very important within the coroner's office as in Ontario or with good established personal links as we have in Quebec. But these links have been established through time by links with coroners and pathologists by presenting at their conferences, for example, and getting to know them. But the system is more fragile than having something very established. And the other thing is that post-mortem investigation is completely reimbursed. So that's one less barrier. Management and communication with family is also variable. Depends on how the coroner knows about, has medical knowledge, knowledge about genetics and communication skills. And family members often have to seek care by themselves, which is very tough. And I think Andrew expressed it well. It's a very tough moment for these, very traumatizing event for these family members. And that's a bit hard when they have to do it for by themselves, especially when they don't have a family doctor. So I think the Ontario setup with someone really responsible of the communication with family and being able to directly refer these family members to a cardiogenetics clinic is probably the way to go. Access to genetic testing, I would say, is globally okay in Canada. It's all covered by the public system. I think initial recognition and awareness of cardiogenetics condition is really increasing, but that causes the problem that there are limited inherited arrhythmia centers in Quebec and in Canada. So the wait lists are often increasing. So we're working on improving that by teaming up with general cardiologists with some support so that we can increase our capacity. Geographic barriers. So you've seen Canada as a big country, but it can make it difficult for patients living or family members living far, but teleconsultation helps. And we had the chance at Montreal Heart Institute to have the clinical lab at the hospital. So it helps with communication and getting results very quickly when we need. So this is very small. You don't need to read this, but these are the cardiogenetics clinic in Canada for adults and pediatrics. So it's available on the internet on the HERO website. And we're also lucky to have in Canada this network called Hearts and Rhythm Organization, or HERO. This was started and led by Andrew, thanks to him. So it's a closely knit community of those working in these inherited heart disease clinics that help us do research. And so we have registries for patients with unexplained cardiac arrest, the CASPER registry, and other specific diseases, inherited diseases that cause sudden cardiac death. But this is also good for us to discuss with other peers that treat the same diseases and globally try to improve the system we're working in. So in conclusion, I think a sudden cardiac death management is difficult because it's at the intersection of different expertise and system. The evaluation of inherited condition, I think awareness is increasing, but we need to increase our capacity to do genetic testing. The management of sudden cardiac arrest could be improved for sure. And in the management of post-sudden cardiac arrest, I think access to cardiogenetics is very important and good communication and care of the family is crucial because ultimately this is what makes it worthwhile. Thank you very much. All right, next we have Dr. Zhang Il-Choi. He'll talk about the landscape of sudden cardiac death in Asia. Thank you. Thank you, Chair, Dr. So I'm introducing the Asian data, and there is a few data in the Asia-Pacific region, and also, as you know, there is many country, there are many country in Asia-Pacific region, and we need to consider disparity about health care system and the socioeconomic status, and also, there are many different clinical practice pattern in Asia continent, and so I would like to introduce in the data, and based on the Asia-Pacific region, mainly Japan and Korea. And first, the epidemiology, this graph shows the global incidence of sudden cardiac death, and as you can see, Asia-Pacific region shows a lower incidence compared to U.S. and Canada, and Europe, and even in Australia and Asia-Pacific region. This is the exact number of incidence of sudden cardiac death in East Asia and Japan, China, and South Korea, and the incidence number is 15 to 30 per 100,000 person, and however, in the U.S. and Canada and the European country, and the incidence number is 50 to more than 100 per 100,000 person, is the difference of point. And we wonder whether this is a country-specific finding, or maybe caused by ethnic difference. So this is a post-study in San Francisco, and as you can see, the Asian people show the significantly lower incidence of sudden cardiac arrest compared to black, as well as even in the white people, and the risk ratio is 0.51, significantly different. And one of the most possible reason is the mechanism of sudden cardiac death, so this is OECD data, and incidence of ischemic heart disease mortality is lowest in the East Asian country, in the Korean and Japan, compared to other middle to high-income country like this. And Dr. Sumich reported in this wonderful data, as you can see, the age is the most important risk factor for sudden cardiac death, and the incidence of sudden cardiac arrest is increased with age. This resulted similarly with Asia-Pacific region, this is Korean data. Interestingly, this is OECD data, and the projected change in the life expectancy at birth from 2010 to 2013, the South Korean and greater in projected change of life expectancy compared to other country. I think this finding may be similar with Asia-Pacific region, especially in East Asia country. So the age is the most important factor for sudden cardiac death, and this is Korean data. As you can see, age and sex are just the incidence of out-of-hospital cardiac arrest, significantly rapidly increasing from 2008 to 2017. However, the one-year mortality rate after out-of-hospital cardiac arrest is just gradually reduced. This is one of the hurdles in our country. This is the cause of sudden cardiac death. The previous presenter reported in the many genetic testing inherited autism syndrome, and there are unique difference between Caucasian and Asian people. Currently, atheroid disease is the most common cause, similar in the Western and Asian people. However, the proportion is a little bit lower in Asian country, and in addition, in proportion of inherited autism syndrome, including Lanketi and the Bulgaria syndrome, is more common in Asia country. The Japan, 10%, and the Western country, just 1% or 2%. And this is the real data in the Asian country, in Japan and Korea, and the Hisayama study showed that among the all sudden arrest, unknown sudden cardiac arrest, the 11.2% is a very high number. The Korean data is similar, 14.7% in the sudden unexplained death syndrome. This number is similar across all Asian countries. This is higher than Western country. Korean atheroid disease is less than 60%. However, the genetic inherited autism syndrome is one of the most common cause of sudden cardiac arrest in the Asian country. Genetic testing result is not good. Diagnostic yield is very lower compared to other countries, especially in the European country. This is based on Bulgaria syndrome registry in the SCN5 mutation rate. Next is the ICD-PRO sudden cardiac death. This is a paradigm HF trial in the U.S. is the highest ISD user worldwide, in the more than 50%. The Asian country, less than 10% is very low number ISD user. Based on 10 years ago, Asian HF registry, there is some disparity in the ISD user in the all Asian country. Japan is the most common ISD user. This is just 10 years ago data. However, recently the APHRS-White Book reported that CID implant late in the Asia-Pacific region. As you can see, the Hong Kong, Japan, New Zealand, and Singapore is a higher number of CID implantation rate per million people. We think that some healthcare system and reimbursement of support in the socioeconomic status is an important factor to receive ISD or the CID implantation in Asia-Pacific region. Interestingly, this is Korean data, and etiology of ISD implantation and inherited syndrome is very high, about 20%. Japanese data is 15%. This is very different to Western country. In addition, the unique characteristic finding is primary prevention is very low, especially in ischemic cardiomyopathy, about 30%. This is a main problem in ISD implantation in Asia country. However, this pattern is a little bit changed recently in the Western country, U.S. and the U.K. The instance of death of ischemic heart disease rapidly decreased from 2000 to 2019. However, in Asia-Pacific region, this number is increasing. So based on this data, we need to focus on the management of ischemic heart disease in our society. Lastly, the future perspective. This is a current scheme of sudden cardiac death management, and we just only focus on the out-of-hospital delivery and hospital management of post-sudden cardiac arrest management or work for closure of sudden cardiac death and rehabilitation. How will we, everybody, feel the clinical unmet need in management of sudden cardiac death? As you know, after pandemic, digital health technology is widely used in our practices, so this is a very interesting data in the OECD data, Digital Government Index of 2019 and digital by design proactiveness in the government support, and the OECD average like this. So Korea and Japan, one of the highest region of highest digital government maturity, and so we can apply the digital health care system in our clinical practice. So this is published in the Lancet Commission and mainly in the emergency department, and so we can change this technique is one of the solution for improved resuscitation, and so we apply the wearable device and the smartphone and AI-based SCT, all the detection of prediction, and we are instructed in the education, CPR education, and the drone can be also delivery in the SCT patient. So in summary, instance of sudden cardiac death in Asia is lower than Western country. The risk of sudden cardiac death increased with age, and the projected change in life expectancy is greater in East Asian country. And coronary artery disease account for much lower percentage of sudden cardiac death in Asia country, although the percentage of coronary artery disease seems to be increasing over time recently. Inherited autoimmune syndrome, including Brugada syndrome, is a major cause of sudden cardiac death. Thus, NGS-based genetic testing is also becoming more important in clinical practice, especially in Asia-Pacific region. ICD is still underutilized, probably due to socioeconomic status. Finally, many Asian countries are rapidly preparing for digital health transformation, and also we can enhance the technological solution for improved resuscitation. Thank you for your attention. Thank you. Okay, Dr. Peter Pothma from Amsterdam University Medical Center, and he's going to talk about Europe. So thank you very much, chairs, for the kind invitation to share with you today the global landscape of sonocardic death in Europe. I often feel humbled when caring for these patients and their families. It's a privilege, and it's much better than caring for victims of war or poor healthcare systems, because we are among the richest healthcare systems in the world. I will show you some issues on Europe, ways we address sonocardic death, sonocardic arrest, and inheritable arrhythmia syndromes. So I do not have any relevant disclosures. So Europe is bigger than the States and Canada combined, but of course smaller than Asia. We have in the European Union almost 450 million people. When you count Europe as a whole, it's 750 million people. In the European Heart Rhythm Association, actually, we have 55 countries which actually extends into Northern Africa and into Middle Asia. Two countries have been expelled in the last years. We have several leading European sonocardic arrest projects in Denmark, Sweden, France, and the Netherlands. And I will show you some of these data, which are really on the top of this field, I believe. And this is all funded by European Union fundings. And we also have a European-funded European reference networks, which will guide the treatment and diagnostic evaluations of people with rare or low-preference disease of the heart, which is in general congenital cardiology and inheritable arrhythmia syndromes. And these centers are scattered around Europe with regular meetings and updates in trying to improve treatment across the countries in Europe. So the issues in the case of Peter, I've tried to summarize all these questions, Andrew, so I came up with these four. So bystander CPR, what would we do, access to cardiogenetic testing, and would Peter have had an autopsy? So if you talk about bystander CPR, the best you can get, apart from this room maybe, is the neighbor who's living next door. And we have quite good investigations in our area in Amsterdam. It's called Arrest Study, and we studied this issue quite thoroughly. And this is one of the examples, which quite nicely matches the example from Oregon, is that the time between emergency call and the first shock by any defibrillator, and mostly in AAD, in minutes is plotted here, and return of spontaneous circulation before transport to the hospital, which would be the best outcome parameter. And what you can see here on the far left side, and there's even people with a first shock before the emergency call. So these are people who have access to AADs, know how to recognize an arrhythmic syncope, and start resuscitating and delivering a shock before they call the emergency number. And actually in those people, they have the best survival of all. 86% will have a return of spontaneous circulation before transport to the hospital. And what you can also see, if there's a delay in minutes, the return of spontaneous circulation gets a lot lower. And the way how we organize this in the Netherlands is a system that's called Heartbeat Now. And Heartbeat Now is a mobile phone delivery app, which is activated by the emergency teams behind the emergency call, and activates mobile phones through the app to people who have volunteered to be alerted when a psychotic arrest happens in their neighborhood, or actually in the surrounding where they are at that exact moment. About 1.3% of civilians have adapted to this program, and the program sends out alerts to mobile phones and directs some people to the place of the accident, and others together to fetch an AAD and then go to the place of the accident. And this actually improved our out-of-hospital cardiac arrest survival over 50%. So survival for out-of-hospital cardiac arrest with ventricular fibrillation in residential settings due to introduction of these volunteer responses increased from 26% to 39% over the years in this program. And actually, in the Netherlands, we are the top level of out-of-hospital cardiac arrest survivors amongst Europe. The next thing, of course, would be the time delay to find an AAD, and this has been studied as well. And this is Amsterdam. It's a map of Amsterdam. And the first thing you want to know is where the sudden cardiac arrest happens at which time points. And so this is during the day. The center of Amsterdam is far red. Most people in Amsterdam are in the center, tourists, residents, all of them alike. And of course, the cardiac arrest incidence is highest in those areas. However, if you look into different time slots during the day and night, this changes a little bit, and you can find out on which places you want to put AADs. And actually, what we found out is that mortality in these regions is lowest in the places with the highest incidence of sudden cardiac arrest because there are so many volunteers, because there are so many people around, and because the AAD locations are well chosen. But there are also areas in which we need to improve because people cannot find AAD, for example, or it takes too long. And those are the red areas on the right lower panel. And one of these thoughts about getting AADs to sudden cardiac arrest victims is, of course, by drones, which has been studied in Denmark and Sweden predominantly. And this works indeed. So the emergency call team dispatches an alert to the flight deck, and the flight deck then launches an AAD to get a drone with an AAD to get the AAD to the victim. And indeed, this works in more rural areas when there's a time delay for an ambulance to get there, but this doesn't work in civilized areas where there's a lot of AADs, a lot of people, and shorter ambulance times. So AADs are, by drone delivery, can be a good idea if you have remote areas. And as to walk-up and cardiogenetics, we did a survey in the European Heart Arrhythm Association countries. We had quite some replies of our members, and actually what happened is that when you are in one of the Inheritable Arrhythmia Syndrome units, the number of patients, of course, is much higher. Let me see. But also the number of diagnoses made is much higher. So it's quite important to actually get to one of these specialized Inheritable Arrhythmia Syndrome units. And as to the work-up of patients with a sudden unexplained death below 40, which was our case that Andrew introduced, if you want to study their families, we did another survey on this matter. And there's quite some disparity, actually, among European centers on how these patients or their family members are investigated. So first-line testing, this got a little bit small here, but most people will get an electrocardiogram, most people will get an echocardiogram. Quite some people, so relatives of a sudden death victim will get an exercise test, and then the other investigations are less and less often used. But if there's still the thought about inheritable syndromes, then in a second line of testing, cardiac MRI is most often used amongst all investigational methods. And then to autopsy, which has been, well, a worrying thought for the past years, actually, because autopsies has gone down across Europe, and indeed, quite some autopsy undertaking in city cases in quite some countries across Europe, there's not a lot of autopsies being performed. But still, if you happen to be at the right center, I think the treatment and the workup will be just excellent. So thank you very much, and always welcome to visit Amsterdam. Thank you. Okay, to discuss the landscape of Latin America, Dr. Luciana Saccilotto. So good afternoon, everyone. I would like to thank all of you for this opportunity to talk here and my colleagues from Latin America to represent them today. So I have nothing to disclose and the first thing raised by Dr. Crain was about syncope awareness and we do a lot of campaigns and to try to reach people for this awareness but we also think that this is a matter of pre-participation problem because Peter was an aspartic patient and he had two red flags in his history. He had syncope and he had also a family history of a suspect cardiac disease and then to better understand how we provide care in a Latin American we conducted a survey this year across the 11 countries from Latin America. We had 439 answers, most of them from Brazil, from young cardiologists and 82% of the respondents said that their response to out-of-hospital cardiac arrest is inadequate in our region and about the lack of education initiative, almost 90% of the doctors answered that we need to improve health care professional and general population training and this reflects in not good results because this was an interesting data presented in ICC a couple of months ago. Doctors from Washington showed that in a video based analysis in aspartic sudden cardiac death that we had a very low chance of survival and a low use of defibrillator. So this is very important and raises a question if we need by now to do something to start reducing these problems and to show how we need to conduct this first response because we have this problem in the ambulance so it's bigger than what we were discussing from now. So in a city in southern Brazil we had only 2.4% of the calls attended in the ideal five-minute window but we have some place with a good educational program and defibrillator available like the metro in Sao Paulo. Sao Paulo is the hugest city in Brazil with 3 million passengers on a weekday in the subway and our average time from collapse to defibrillator was 4.8 minutes but we know that among survival this number needs to be even better. So you asked also about the diagnostic workup and then as we are in a university hospital we have everything to do the best for this patient. At his age the most important thing is to evaluate a structure high disease coronary artery disease and channelopathy. You mentioned about the anoxicity prolongation during the evaluation and then we have this protocol of ECG to rule out this possible confounder and also doing hypercordial ECG because we are in a university hospital with arrhythmia service. And then in these settings we have easily echocardiac MRI and coronary scan and we also have lack of drug challenging so we try to look for spontaneous fluctuation of the ECG so we perform as far as we can. If Peter survived we used to perform like all-in-one stress testing with using hypercordial leads, v-skin testing, CT measurement and then we repeat the stress testing if nothing is achieved then we do the burst stress testing we have learned from Dr. Cran and colleagues. And about the service in post-mortem evaluation we have two different service, one from natural death and the other one from unnatural death and we have just now approved the molecular autopsy protocol and then we can do all the protocol we've learned in Casper Register and Mayo Clinic etc using verbal autopsy then expert cardiac pathology evaluation counseling and genetic testing when appropriate also based in 2020 consensus. Another thing that worries us is that when we ask in Latin America the molecular autopsy means 46% of the participants answered they are not sure about how to perform that and if molecular autopsy is available in our region we own less than 5% of the doctors know how to proceed to a molecular autopsy or to find some place to do that and the major problem may be that we need to work on educational initiative is that 20 out of 400 doctors answered that would never request a molecular autopsy in cases like Peter. But we need we need and we have a place to do the family screening also in university hospitals so it's easy it is in Brazil because we have a easy approach to the family they respond well to this request and we are always afraid about these acquired only syndromes and so we know that the mother his mother has an along kitty syndrome with citalopran and his father has a heart failure after chemotherapy so sometimes we really needed to explore more these issues we think that Peter has more than a he has a family history that would worry us so we need to compare data from autopsy and the his dad's MRI and we are going to show our data in a poster session on Sunday looking for ring-like pattern and genetic background but in our our main result was laminopathy and you also asked about who should be evaluated so we understand that all his paternal side needs to be evaluated and Peter should should be analyzed at first because he has the worst phenotype so we have two leading products on cardiogenetics in Brazil public project with almost 4,000 problems sequence but when we see the big area of Brazil we know that we are underrepresented a cardiogenetic it has this structure in our region but 47% answer that it's only for a few centers and 35% answer that which was only for private settings so we know that we need to improve that we Latin America represents 8% of the global population and we really we do think that we are a different race a mixed-race population underrepresented in clinical trials underrepresented in cardiogenetic biobanks and although we have this net this multidisciplinary networks it's only restrict to University Hospital so we really think that to improve we need to come back to basic lessons and improve survival the familiar availability and awareness and then base our decision in our own data and improve the access to to this care so no we are not yet prepared to that but I think initiatives like these will help us to improve this result so these are these are my final thought we have a unique population in many common challenges our great concern is how to deal with preparation evaluation awareness out of hospital cardiac arrest and defibrillators our major gaps is access as a big country a big region and but also lack of medication we discussed only about azmaline test to diagnostic workup but we also have lack of medication to treatment and this growing network to build this structure strategy probably is something that will help us to improve this reality thank you very much for the attention regional speaker is from Africa dr. Merva Abu Mahdi is one of our key opinion leaders representing Africa and she's also the president of Africa welcome good afternoon everybody I'm really glad to be among this eminent electrophysiologist and I'm going to show you the reality in life okay start my presentation will start by a survey which was conducted with by one of our third year fellow in the Egyptian board of electrophysiology and then we'll listen to a video which was recorded by a little surge from Africa look at this video this is a karate player 14 years old who dropped dead in the match in this competition and you can see their paramedics when he ran he didn't even figure out that he was dead and did not start CPR this is a lucky man who is on the bicycle he received ICD for secondary prevention he fell from his bike and he received he will receive a shock by his device now and he the people were just watching him this is the this is the main issue this survey was conducted by 63 doctors from 13 African countries and all stated that beside the routine ECG echo cardiac MRI and wearable devices were the most available diagnostic tools for sudden cardiac death however implantable recorder and Ashmolean testing were not there 66% reported the availability or the non availability of genetic testing which is not available a documentation of the cause of death it was not documented in most of the responders in this survey the presence of national registry there is no national registry for sudden cardiac death in many of these countries the presence of automatic external defibrillator in only 27% of the answers and people don't know how to use it those who know is about 20% medications available in my continent lidocaine atropine amiodarone yes but mixylatine quinidine procainamide diazopyramide flaconite are not there the availability of the techniques are shown here in order to treat arrhythmias the 3d mapping yes cryo balloon yes pulse field ablation is very little has not entered into the continent sympathy sympathetic to me in order 26% of responders device implantation pacemakers yes CRT yes however subcutaneous are said ICD leadless pacemaker implantable loop recorder conductive system pacing is very little in this continent the main barrier is the prices we are the high prices the hospital gas lab availability and the personnel trained ambulance are there but however the response to the ambulance is between 30 minutes to one hour to reach the police and they are not equipped some of them by defibrillators availability of emergency PCI yes 85% but availability of emergency arrhythmia treatment is only 33% training medical staff by basic life support advanced life support yes and the availability of training centers in 77 of responders a pre-sport evaluation program by ECG and echo yes available but not more than this here is the video and I want you to enjoy it and emergency room treatment of ventricular tachycardia is widely available in South Africa the response times for the private response teams are generally quick patients will be seen and taken to a private health care facility where they'll be managed by an emergency room physicians and patients who present to a public institution will also be managed in emergency rooms and the response time might be slightly delayed and genetic testing and genetic testing is not widely available in South Africa all genetic testing is done by private hematology labs and South Africa does not have a national guideline for the management of sudden cardiac death. Of an emergency treatment of incessant supraventricular and ventricular tachycardia in our country, yes, we have this service on both private and national-based, or I mean university-hospital-based categories. But it's only mainly in Cairo. If we have genetic testing for the patients with suspected arrhythmogenic disorders, yes, we have several sporadic centers that can do genetic testing and probably they send it abroad to have the results of this genetic testing. But we don't have a structured program for the patients with arrhythmogenic disorders to have genetic testing. Our screening of the patients with sudden cardiac death or arrhythmogenic disorders, no, we don't have a national program. So bystander CPR has not really taken off, not in a structured way. There's no government initiative that's trying to drive this. In terms of access to AEDs, AEDs are available in private facilities like hotels or certain exclusive gyms, but you won't find them in public spaces, so you won't find them in public offices at the moment. You won't necessarily find them in open malls unless they're private malls. So in general, no, we're way behind. There's an initiative that we're trying to learn from that was started in Denmark to try and encourage people to take up bystander CPR and to connect them with AEDs. There are groups like the Heart Attack in St. Kenya, which are actively trying to train as many people as possible, either drugs or shocks or ablation. So the first thing to say is that there isn't a facility, certainly in the capital city, that can do an emergency ablation at the moment. We don't have the infrastructure or the setup for that. Sudden cardiac death in Libya, the first point or the first question is about the major barriers and challenges to effective emergency management of sudden cardiac death in Libya. Actually, there are many challenges, but the most important five points are limited pre-hospital emergency responses, lack of trained personnel, there is a public awareness and bystander response delay, insufficient access to defibrillators in the Libyan population, and also there is a problem with the hospital readiness and resources limited in a country like Libya, which is a third world country. Actually, the healthcare services are fragmented and insufficient among the whole country, and there is insufficient or ineffective referral system of the people to the well-organized or well-equipped hospital. There is a limited number of well-equipped ambulances in the Libyan country. There is poor coordination between hospitals and emergency medical services, and also there is a geographical barrier because of the large area of the country. Many people are afraid to participate in resuscitation because of afraid of doing harm or ethical or legal issues. Also, there is a huge need for a national CPR and automated external defibrillator training programs among the Libyan population. I can say in the capital city, we have, let's say, three to four hospitals doing that. We have a team on these three to four hospitals that do that. The other thing is the countryside. We don't have, in the countryside, available transit pacemakers. Even people who know very well-trained personnel, we don't have. Even people, even the devices, we do not have. We do have a program of basic life support and advanced life support that is recognized with the American Heart Association, and there are some courses going on regularly. Regarding if we have automatic distributions in public places or airports, no. Until now, we don't have that. Unfortunately, in Angola, we don't have genetic testing. In Tunisia, we don't have a national registry including survivors or victims of sudden death, but we have four published Tunisian autopsy-based series. Departments of legal medicine and cardiology are implicated in such series. In our daily practice, we perform screening of family members of sudden cardiac death victims following the ESC guidelines, but we don't have our own guidelines for screening. Genetic testing for inherited arrhythmia disorder are available in the private, and they are not accessible to all patients. Systematic autopsy is not totally accepted for cultural reasons and issues. South Africa has a pluralist health system with great variability in terms of resources, wealth, and structure between the provinces and within the province. South Africa follows the AHA courses, and therefore CPR programs are run in line with the AHA courses, and public CPR training events are organized. In terms of AEDs and defibrillators in the public areas, in South Africa there is no registry or specific legislation which mandates AEDs or makes it mandatory to have AEDs in all public spaces. In terms of cardiac ablation or ablation for emergency management of incessant VTs or pre-excited AF, again, ablation is more prevalent and available in the private sector, and therefore access is greatly limited for many South Africans. Let us say infrastructures and tools that are in Cameroon facilitating the diagnosis and the management of the case of patients with suffering death or of patients that are presenting with some arrhythmias. The first question was, what is the average emergency medical service response time for suspected cases of cardiac arrest, and how will you break the public awareness of sudden death in my country? Actually, it's really difficult to respond to the question in my city. Why? Because we don't have emergency medical services in my country functioning in more than two regions. We are having ten regions, and the emergency medical service is really active only in two regions, in the central region and the littoral region. And when I'm saying that it is functioning, it functions not really as we are expecting, because there are not so many cars to help Cameroonians. For the time of charge, it is more or less respected in the hospital structures. So we have the large university hospital structures, we have good control of the respiratory cardiac arrests, there is a record of primary coronagraphy and angioplasty. The second question, for the second question, we don't have a training program, unfortunately, for doctors, whether they are generalists or specialists. So we don't have a national registry that is interested in sudden death in Algeria. And today we will answer three important questions about sudden cardiac death and ICT implantation in our country, Morocco. And I can say, first of all, that ICT implantation is available only in five regions in Morocco, Tangier, Rabat, Casablanca, Marrakech and Agadir, and most of activity is localized in private and most activity is localized in Casablanca and Rabat. We don't have official data of number of ICTs implanted in 2024, for example, but the data from distributors suggests that in 2024, 200 ICTs were implanted and with a ratio of 5.2 ICT per million per year, which is a very low ratio for this country. We have the chance, because now genetic testing is available in National Hygiene Institute in Rabat and we have the possibility to do a screening for channelopathies, laminopathies and for hypertrophic cardiomyopathy. And to answer the third question, we don't have a standardized national protocol to allow for the management of this patient, but the most of physician, of EP consultant, follow the European guidelines. But the big problem in our country is insurance, because it does not cover most of an indication in primary prevention. And thank you for your time. I'm from Sudan. Right now, I work in Somalia in Mabdishou Hospital. I have some concerns, including about the SYNCOV in my country. So generally, the response for patients with SYNCOV attack or have been having cardiac arrest in my country, it will take a time. Unfortunately, it might be 10 to 20, 30, up to 30 minutes, and maybe longer because we have low resource in my country. So the other things I'm concerned about with the genetic testing in my country, I think there is no genetic testing in my country for the family. Generally, education presented with SYNCOV or sudden cardiac arrest, we do a simple screening like an ECG, like ECHO, and like to rule out structural heart disease or channelopathy. The use of automatic sterile defibrillator, generally in my country, just in the emergency room, in a private hospital, used in the emergency room, ER, in the ICU, and in the CCU. Outside the emergency room or in the hospital, I don't know we have automatic sterile defibrillator or not. And thank you for listening to all this continent which is suffering, but as long as we are with you, we are going to beat this sudden cardiac death and help people to live better. Thank you. All right. Bringing up the end of this first session, Dr. Mina Chung, all of you know her as your new HRS president from the Cleveland Clinic, and she is going to talk about bringing it all together. She was supposed to go at the end, but she really wants to talk about the next steps for HRS in sudden cardiac death. Thanks. Thank you, Christina, and thank you to you and Andrew and the global committee for putting this together, on sudden cardiac arrest and sudden cardiac death. That has become a big passion for me over the last few years. So it's hard to follow all these wonderful presentations where we hear a lot of the needs around the globe. I'm going to talk a little bit about some aspirational technology, but we'll try to bring it together and what we could do as a global community within HRS. Am I using the wrong one? Oh, got it. Thanks. Okay, so we've heard a lot about a lot of these statistics already, not just in the U.S., but globally. And in the U.S., as we've heard, there are over 356,000 out of hospital cardiac arrests per year. And just in the U.S., that's about a thousand per day. Globally, there are three to four million sudden cardiac deaths per year, and that accounts for about half of cardiac deaths and 15 to 20 percent of overall mortality. And as we heard, here in the U.S., where we have some registry data through a registry called CARES that covers almost about half of the arrests that at least are reported to EMS, survival to hospital discharge overall is about 10 percent. We've maybe moved the needle a little bit. It used to be less than 10 percent. Now we're at 10 percent, so I'm not moving it real fast. Now, one of the hard things is that three quarters of these happen at home and half are unwitnessed, where the outcome is even worse, like 2 percent. So this is really a huge problem. And public AED use is really low, even in the U.S., 2 to 10 percent. On the right is the Meyerberg figure that is very, very familiar to many of us in EP, and what I call the sudden cardiac arrest challenge. On this left column, we have the incidence of sudden cardiac arrest, and on the right, we have total events. So as you see down here, we've done a pretty good job in EP at being able to identify some people that are at high risk, like 10 to 30 percent at risk for sudden cardiac arrest. And we've done clinical trials, randomized clinical trials, that show that they benefit from ICDs. However, these represent the vast minority of the people who actually have sudden cardiac arrest. Most of the people are in an intermediate group, perhaps with EF greater than 35 percent, plaquing, who knows this, cardiomyopathy, but they don't reach a point where they've had a high enough risk where we can protect them with an ICD. And unfortunately, as we've heard, approximately 40, 50 percent or even more sudden cardiac arrest is their first manifestation of cardiac disease. So we know that AED access is really important in CPR. This table illustrates some of that, where we see here if a firefighter or police person applies an AED and uses it, that the outcomes are actually better than what we're talking about, 10 percent. So it's 11 percent, 28 percent. But if a bystander actually does it, so that means they've gotten there before, the outcomes are much better. And we heard some of the other studies that have reported that as well. But as I said, the bystander use is only 2 to 10 percent, 2 to 5 percent in the CDC survey. And there are a lot of reasons for that. Lack of knowledge, unwillingness to use, limited access to AEDs. There are a lot of disparities in use of bystander CPR and AEDs. Survival rates are 2 to 11 percent, but can be really good, up to 70 percent, really good. And that's so, so 70 percent of an AED is used within two minutes of collapse. On the top here is the American Heart Association chain of survival. And what you see is that there's a recognition that these chains, the links are activation of emergency response, high quality CPR, defibrillation, advanced resuscitation, post-cardiac arrest care, and recovery. There's been a lot of focus on defibrillation and advanced care, post-cardiac care. Perhaps, although there's education on CPR and trying to get AEDs, we could use a lot more attention to these earlier links in the chain. In fact, this is another chain of survival from Sudden Cardiac Arrest UK, where they focus even earlier than the AHA chain of survival on early recognition and call for help. And also prevention of Sudden Cardiac Arrest, which you heard about from Dr. Chu. And this is really important because it feeds into being able to apply CPR early and early defibrillation. So we've heard a lot this afternoon about difficulty with access to AEDs and CPR across the globe. The next few slides, I'm going to talk about some aspirational technology that may be used to improve our outcomes. And not all countries may be here, but I think we're getting there. So as Dr. Chu pointed out, it's time for parallel approaches. We've had limited success in being able to predict Sudden Cardiac Arrest, and we have to go beyond just LVEF of 35%, perhaps being able to predict near-term risk for Sudden Cardiac Arrest from those with symptoms. But I also think that we should be putting attention on the acute event itself. If we can't predict it very well, let's try to detect when it happens. So if we can coalesce and convene these personalized digital health wearable technologies, we might be able to accelerate the detection of acute Sudden Cardiac Arrest. Remember that three-quarters of them happen at home, half are unwitnessed. And we might then be able to deploy EMS resources faster. There are a lot of examples of digital technologies that can be applied to Sudden Cardiac Arrest detection. And I learned about this first when my husband tripped, and his Apple Watch said, it looks like you've taken a fall, and if you don't respond, then it's going to call 911. I was listening to that, and I thought, wow, your watch is connected to emergency medical services. Well, we have a lot of other digital technologies, including detection of oxygen saturation, pulse rate, ECGs are being implemented, and various things like garments and textiles, smart sheets, handles, steering wheels, people are looking at. And we have also some interesting apps that have come out with detection of agonal breathing, and detection of pulselessness and activation of EMS. I want to focus on this a little bit, because this is a very recent development. And this is the Google Pixel 3 watch. And Jake Sunshine, who was supposed to be here, and I apologize that he had a family emergency and could not be here this afternoon with us. He was involved, he's at University of Washington, and also works partly with Google. And he and his team have developed both of these technologies. And the Google Pixel watch has been deployed in Europe since August of 2024, and was just approved in the U.S. by the FDA February 26, right on about the same day that he published his Nature paper on this. So I want to show you his Nature paper. And this has been a long development path, but what the watch does is that it shines, it has continuous PPG monitoring, photoplethysmography, to try to detect pulse. There's a green sensor that's on all the time, and if it detects something, and there's some machine learning algorithms in there, then it turns on another infrared and plus green sensor. And if it goes through its algorithms and detects that this is truly loss of pulse, then the user has haptics, so vibration, and it can start speaking to it. And just like that fall detection, if you don't respond, it actually puts in a call to EMS. So this is really cool. This is what I've been waiting for for a long time. But the problem is that we have this technology, but it's not necessarily the most accessible to everybody. And so I hope that one day that we will be able to use this connectivity and be able to develop a lot of sensors that can do this, and then be able to connect to EMS. The other technology that I thought was really interesting was detection of agonal breathing. So Jake's group recorded a whole bunch of recordings from 911 calls, and he picked up agonal breathing. And agonal breathing is present in about half of cardiac risk cases that are reported to 911, and it's associated with higher survival rates. People are still alive at that time. So he compared to use some machine learning AI algorithms and fed in 911 audio versus polysomnograms to try to exclude sleep apnea and other household ambient noise, and developed an algorithm where the AUC, the C statistic, was 0.9993. Look at this AUC curve. You ever seen anything like that? I've never seen anything like that. Anyway, that was pretty specific, and so it's much more specific than, say, fall detection. So that's what is really needed also in this area, is that we really need to minimize false positives. We don't want to overwhelm our EMS resources. But you can imagine the day where this could be implemented into a smart speaker, into your phone, and you could just go to sleep at night, Alexa, monitor my heart, and, you know, if it detects agonal breathing, then call 911 while your watch with the pulse detection is being charged, something like that. So there are also implantable cardiac devices that could be connected for sudden cardiac arrest detection. Just think about all those loop recorders we're putting in. You know, if it detects VF, oh, well, you know, you just have this nice strip that you now can show on the slide of VF, and it's very sad that it never connected to EMS. And also pacemakers. You know, these things have the highest fidelity detection and recording of ventricular fibrillation and pulselessness. So these, you know, would have a very good specificity. Even your defibrillator, who maybe goes through all of its shocks and doesn't do anything. Or your wearable cardioverter defibrillator that there's some connectivity on wearable cardioverter defibrillators, but not necessarily for failed shocks or asystole. So we need to break down barriers, because our industry colleagues have a hard time with developing the connectivity to EMS. The regulatory path is challenging. So hopefully we can break down some of these barriers. There are also advances in deployment, and we've seen that in Europe, where you can deploy to people who, you can notify nearby CPR providers and tell them where the AEDs are located. In the U.S. we have some of these. This is a program that you could put on your phone called PulsePoint. It's active in many, many communities, and it can notify nearby CPR providers. And we already mentioned drone-delivered AEDs. Maybe that'll become a thing. And also in Australia, they're doing a study giving high-frequency CPR providers these small portable AEDs that they can carry around and then take with them to the arrest. And look how small they are getting. So this was shown in EscapeNet that you mentioned before. This is a nice study that was published in JAC that showed five European sites that had these volunteer responder systems that were activated by emergency medical dispatchers. And in this retrospective analysis, but with very high numbers like 4,700 people who had it activated versus 4,857 that didn't activate, they showed an increase in bystander CPR, an increase in bystander defibrillation, and amazingly, an improvement in 30-day survival. They actually moved the needle, so this actually can work. So what is HRS doing? A lot of things we're doing. Part of what we're doing is this global summit on sudden cardiac death, and I'm hoping that we will learn a lot through the rest of this afternoon to really come up with actionable things that we can do once we figure what this is helping us figure out what the resources are, where the gaps are, and hopefully we can identify actual real action steps, put together a white paper, and really do something to really tackle this sudden cardiac arrest challenge. We have formed a task force. We met this this morning, and many of you were on this. And one of the things that we, some of the things we want to do is shown here. We want to facilitate standardized implementation of CPR and AED training among high school college students. This is just a start. We want to collect our existing resources. There are a lot of people, there's a lot of a lot of organizations in this space, at least in the United States, to try to educate students, and they have resources. Our pediatric EPs are all over this space, and so we need to like collect this. There, in the U.S., there's this act called the HEARTS Act that is supposed to support CPR training in schools and and and AED access, but it was not passed with any funding. And there is a bill going through Congress trying to get funding for it, but still not going to be enough. You can't pay for all those AEDs across the country or across the world. So what we would like to do is kind of step in and provide some resources, that a toolkit, create a toolkit of existing resources, links, links to American Heart Association's resources with emergency response plans. They have links to learning hands-only CPR for a button where you can learn it in 30 to 60 seconds. We want to publish a guidance document that has some of these, and we want to mobilize our HRA, Heart Rhythm Advocates, regional councils, and a global council that will be formed within Heart Rhythm Advocates as well, where we can find local CPR ambassadors, engage hospitals, schools, sports teams, media, businesses, pilot sites, etc., and really, really push the sudden cardiac death awareness activities. We have some activities coming up, including a national CPR and AED awareness rally in March that will be in June, and we are a sponsor of that. We want to do some fundraising. We want to approach our AED companies, philanthropy, government, our HRS gala on Saturday to try to support some of these efforts. We'll be collaborating with many key stakeholders in this region and also hope to connect with Health and Human Services and our CDC to show them how important this area of sudden cardiac death is. It is a nonpartisan issue, and hopefully we can generate some interest in it, and again, we'll advocate for the HEARTS Act. So in terms of taking this sudden cardiac arrest challenge globally, I hope that we will come up with a publication of our proceedings and that we can then identify these global and regional stats and registries and resources, as you've already started to do, identify the gaps and needs, and mobilize our global regional societies to really focus a lot on sudden cardiac arrest. In electrophysiology, we haven't, with the exception of some of the researchers here and a few other people, we haven't really been in the resuscitation field as much, but this is really our area, and hopefully we can really come back into this. We can support Pulse Day that ERS started to check pulse. One out of three people worldwide is at risk for developing a serious cardiac arrhythmia during their lifetime, and we want to provide these resources from this task force and do our fundraising, support the EP Research Network that we're also launching here at HRS 2025 on Saturday, where we will hopefully have a focus on sudden cardiac arrest and sudden cardiac death, and figure out how we can help global registries. We're at the beginning of this. We really would love your ideas and your involvement. So more ways that you could potentially help your communities become a regional and global champion. Help us out in our task force to really, really get into the communities in the U.S. and globally. Participate or help. Facilitate public education, promoting CPR and AED education. Advocate, advocate, advocate, and advocate for funding for these sudden cardiac arrest initiatives in research in your countries and our country. Join our task force. We're going to have a huge need for volunteers in a grassroots way to really get into each of our communities to make a difference, and urge our industry colleagues to develop and coordinate sensor data algorithms and connectivity to EMS, and hopefully we'll make a difference in sudden cardiac arrest. Thank you very much. All right, so now we're going to bring Andrew, Dr. Krohn, if you can show the conclusion to his case, and we're going to have some panel discussions, and we invite you to ask any questions that you want from any of the speakers. Just to break it up a little bit, can I ask how many of you are familiar with a book or movie minority report? Okay, many of you. So what we need is precogs who will lie in a pool and be able to tell when you're about to have a cardiac arrest and send the ambulance there before it happens, right? For those familiar, you'll be, you'll recognize that. So unfortunately that was not the case for Peter. Now, OK, I must have misclicked it or something. OK. Okay, so one of the interesting things that happens, and this speaks to the different ways in which information is siloed, at least in our system, is that if you remember, Peter's dad had lymphoma, was undergoing chemotherapy, and the chemotherapy documented after initiation of chemotherapy that there was a reduction in LV function. And that was attributed by his care providers in the BC Cancer Agency to the chemotherapy and radiation that he received. And so in retrospect, we then, as outlined, we revisited that. So let's, okay. So we did an MRI on dad, which was one of the asks that people inquired about, and that showed some fibrosis and mild LV dysfunction, no LGE. And what we did that was different is the initial autopsies are always done in our system by a general pathologist. And then we requested that the materials that were retained, including slides and samples and so on, all would be sent to our cardiac pathologist, which is a regional resource for a forensic review. And they thought there was evidence of a subtle cardiomyopathy. Not overt, which is why the general pathologist didn't see it, but the cardiac pathologist was convinced there was pathology there. And so then, this then creates the question, is dad's cardiomyopathy related to the son's, or is it unrelated to his chemotherapy? And I think those of us who see these kind of patients frequently see there's often some degree of sort of clouding or uncertainty or mixed factors. So then the question is, well, if dad and son have cardiomyopathy, who else should be evaluated? Who should have genetic testing? And of course, typically, families will advocate that the grandchildren have genetic testing because they're the ones they're worried about at risk, but the reality is the parents are probably the better sample to test because that's where Peter's DNA came from, but in fact, the only person we're absolutely sure is affected is Peter. And so the good news in our system is initiatives that started about 15 years ago is increasing access to retain materials that can undergo genetic testing. So anybody want to guess what it showed? We tested Peter. Okay, so he had a FLNC or filament C variant that was pathogenic. And the reason I chose this case, among other things, is a little background is, if we go back almost 10 years ago, this concept of the idea that every cardiomyopathy is arrhythmogenic to some degree. Some are more potently arrhythmogenic than others, and the one we know best that's most prevalent is ARVC. But there are these rare genes, and FLNC is one of them, and RBM20, and so on and so forth, that have a tendency to present with relatively little mechanical cardiomyopathy and more arrhythmogenic. And so the audience doesn't need to know all those rare genes, but what it does need to know is that in families and in younger patients, then these are overrepresented as an explanation for people like Peter. And it fits that he'd have very little mechanical cardiomyopathy, but the most malignant. And in principle, he may have had non-sustained VT, explaining his previous syncopal episodes. So with that, I leave it for our discussion, because I think it was a good illustrative case of us. A dad tested positive, and then CASC-E screening took place, and interestingly, his brother refused to be tested. So that speaks to the family context and the art of medicine as well. Any questions for our speakers? We don't have an audience response. All right. You know, I found a lot of this information kind of eye-opening. One of the things that struck me was a comment about no autopsies being done. Can you explain to us how that factors in in your country? You know, when you have a young child, for example, or a young 30-year-old, if there's no explanation, are they not getting autopsies? So if we cannot access the autopsy, we would have only his parents to do phenotyping, and that was the question, if we don't have the autopsy. Oh, no, my question is, do they get an autopsy? Do they actually get an autopsy done? Or you just can't get the medical records? Sorry. Do young people who die sometimes not have an autopsy? Ah, okay. When I don't have the autopsy, sorry. So sometimes, yes, because sometimes we have some doctors that can't sign for the reason of death, and we raised this question using public documentation. And we saw that 70% of young people who die suddenly have like an infarction result without an autopsy. So the documentation is signed as an infarction, but the autopsy is not done in 70% of the cases. So it can happen. But we are trying to improve this awareness of avoiding this situation. It's on now. Well, I just wanted to expand on the point a little bit in the US. Our national autopsy rate is no more than 5%. However, if you're under the age of 25, in the two areas that we studied on the West Coast, the autopsy rate is 100%. So it really starts dwindling with age. So as you get to 35 to 50, it's down to about 50% and so on. So I think a lot of it in the US is resources, that what we used to do before. And the other aspect, of course, is with amazing imaging that people feel that autopsies are not as important as they used to be. But of course, that doesn't help molecular autopsies. Yes, some other examples. So in the Netherlands, for example, we do not have an obliged autopsy. We are trying to get this regulated, but it stays to be difficult. Of course, younger people will get autopsies more often than older people. One other example would be that we, despite maybe not having an autopsy, we try to insist on blood drawing, also from a deceased individual, if it's still fluid, but try to capture the blood or actually the saliva on the tube that went in during the cardiac arrest resuscitation, which actually is a source of DNA that is quite often usable as well. And another example would be, I think it was New Zealand, who collected blood drops from babies, newborns. And this is collected in a national database. It can be taken out in the case of a suspected... A heel prick. Yeah, that's Parker. Yeah. I think national regulation is the most important aspect. Thank you. Hi. Cameron D'Espolio from Baylor College of Medicine. So question for the panel. For those who live, the 5% to 10% of patients who actually do survive and make it through, and now I'm focusing mostly on the young adults and kids, what is the mechanism in your centers by which they get evaluated for what the cause of their sudden cardiac death was and that their families get evaluated? Do you have a system to start with in place? Yes. Yeah, I mean, it was interesting on my way here, I was talking to a former fellow and mentioning that 30 years ago I met a young woman who was at her kid's birthday party while swimming with no apparent cause. And that led to the question about how we investigate people and led to the Casper algorithm and all that. And so, you know, I think in general there's pretty well-identified guideline, you know, supported systematic testing in terms of imaging and electrodiagnostics and so on. I think what's evolved in the last 10 years is the introduction of genetic testing with a very low threshold, particularly the younger they are or if there's any family signal. So, for instance, in all our unexplained cardiac arrests we do broad panel genetic testing. And we publish that the yield of that is in the order of about 10%, so it almost doubles the yield of making a diagnosis in the first couple of years. And so, you know, I think we have a system and approach to this. Most of the time what I would say as a person who was part of the sort of emerging evidence for this is you need a champion to advocate that there's a standard of care and everyone gets checked and you talk about it and you promote it and you educate and all those things. And then you wait 10 years and every five years you do it over and over again as it gradually sinks in and people start to do it. So, I recall one event where I was – we were, you know, enrolling in the registry about unexplained cardiac arrests and I had been away and when I came back they had enrolled two patients after I was away for a week. And it's so rewarding when it's not just about you, it's the system now recognizes they can't have their ICD before they get their MRI because the images will be crap. Right? And you have to have a referral before they're discharged from the hospital. Those kinds of system things actually end up being more effective than novel science. Yeah. Thank you very much. I have two questions. Basically relating to the psychological impact of this genetic testing that seems to be – we're doing a lot now and I recall several patients that one is a young woman that I treated years ago before wide availability of genetic testing. She now has a defibrillator, a side therapist for ARVC, but just said absolutely he's married that he would never have children because he just does not want this genotype being transferred down. And then there is two boys, one 20, 21, that absolutely refused. Their dad died suddenly. The dad would never have genetic testing done. And if he dies he just wants to die like his dad did. But the mom mandated that the 14-year-old should be tested. Unfortunately tested positive. And then, you know, we're now dealing with pediatric electrophysiologists and stuff. The boy plays football and he said, well, if he dies playing football he really just would be happy doing what he loves to do. So I think we have to balance. It's still a very, very tricky subject in my own mind. How do we – our desire is to keep people alive and how do we get a voice of the patients and people who have survived. I think there needs to be a bigger part of this discussion as well to see what the people – how does the public really see what we're trying to do? Because we tend to talk to each other in our own echo chambers, but we really need to have a louder voice in the room about the survivors as well, our families of survivors, of people who are tested positive. What are the coping with life and what are the things you will be doing to really move this debate in a more equitable fashion in a way? Thank you. Yeah, thank you. So I think it's important. So we struggle with this in our countries as well because we have to do the testing so readily available. I think there's a huge voice for a patient who does not want to be tested. Sometimes the reasons are quite – it's always wise to investigate the reasons. For example, mortgages, children being afraid of doing this profession. So that's one thing. Actually, we – so at this moment, we just provide information to families. So there's a disease found, you can be tested if you want information, come to us, et cetera. But these letters need to be dispatched by the index patient. If he doesn't give these letters to other family members, we wouldn't know. So at this moment, we have discussions on being actively contacting family members. Did you know there was something in the family? Do you want to know? If so, please contact us. And actually, this has been known for familial dyslipidemia. So they have the authorization to contact family members directly without the index patient being the intermediate person, which is quite aggressive, actually. But it does work. Can I just add for Peter? So Peter's father had genetic guilt, a well-recognized essentially coping syndrome around the idea that he had inadvertently given Peter this predisposition. It's a very real thing. It requires continuity of care to support somebody like that. And it took me two and a half years to convince him to have an ICD because he said, if I die, I'll be like Peter and I'm okay with that. So that is a loud voice saying that. In our national organization, we have patients as part of the whole process, including setting research and educational agendas. And their loudest comment to us is we need more counseling and support. I'm David Lee from Halifax, Nova Scotia. I just wondered if the panel had any comments about the different types of tissue available after an autopsy, what types of tissues retained, and how that affects the accessibility and yield of types of genetic testing. So, for example, we find that formal and fixed tissue is readily available, but it's virtually impossible for us to access a lab that will do testing for us from our location. I can tell you, I guess from Baylor, most of the autopsies that are done, there are either blood samples, so in terms of DNA, which is probably what you want, there's usually a purple top tube. There are formal and fixed samples. Our lab right now will take the blood, but they are working, actually, on formal and fixed. And I think they're close. The other thing is the blood spot cards that was just brought up are also being used. And those are usually stored in some medical examiner's office indefinitely. So that might be a source rather than going after, for example, liver. But I do think that's coming up in some of the commercial labs. All right. If there's time, I'd like to bring up one point, and this is addressed to Dr. Nabi. Yes. You know, I was very struck by that video that your third-year fellow put up. It was quite remarkable. And there seemed to be a recurring theme. I mean, we're all good at different things. The resources are not the same around the globe. We all understand that. But I guess the question of why we are here in this room is how can Heart Rhythm Society help? So can we hear from you, for your nation, or as an example, how can Heart Rhythm Society help, in your opinion? This is a very critical political question. That's okay. Yes. First, I think we have to start with the population. And this is what we do with AFRA, African Heart Rhythm Association. Dr. Felix is the next president after me. That we concentrate with one electrophysiologist from each country. Like you saw them all are electrophysiologists. And we give him the responsibility of patient education, population awareness, and doctor teaching. Doctor teaching from the level of general medicine, because some African countries don't have cardiologists, or very minimal number of cardiologists. So teaching doctors at this level, and then going to the EP. And then from the EP, we'll go to the sophisticated procedures. We wish we can cooperate all the countries to like something which I call EP Uber. That we can move with a phone call, because the barriers are not there in most of the sub-Sahara, and also between Egypt and North Africa. So the team can move from here to there, not for resuscitation, but for emergency arrhythmia treatment, or implantation of a device. Awareness, education, facilities, we have to talk to the governments. Because without the support of the government to this important subject, we will not get support. We have to tackle them, and we have to push them. One life equals all the nation. You lose one life, it's not one life. You are subjected to die like them at any time. And using the IT as the watches, even in Africa with low resources, many people have this Apple watch and this smart watch. So if we can apply these IT ideas to people and then train them, this is the big mission of societies. If we divide this into action from every nation with one team, we can help. But we are not sure this is, as you heard from real world, some services are only supplied in the center, not to villages. But if we start, we can make them aware of the problem. Then over 10 years down the road, we can make them active. Thank you. That's very helpful. Dr. Miyake has a program to move on with. So thank you very much. Thank you. And if you have a question, if you want to come up, we can ask. We're going to give everybody a break. And please come back at 3. Let's give you to 3.40. Okay? 3.40. Thank you. Do you play the video of when it gets up to Carolina? Her video's on there. You just have to push. Do you mind starting hers? Not at all. Okay, just because you're here. Because it goes right after me. Is it right after you? It's not right after you. I told them to all come up. I asked them right away. Yeah. It's not right after you. It's just because you're sitting here, I'm pretty sure. I see. I mean, you don't have to. Someone needs to push play. I'll play. Or I can ask them. Oh, geez, hold on. It would be easier if someone up here does it. If that's okay. Okay, I have to keep pushing my slide because it keeps rolling on itself. That's what I like. That's what I'm so proud of. Finished the party? Yeah. Finished the party. Let me know again if you're done. I can't, you know, we can't see it very well. They did not do a good job. So I finished the party? Yes. I'm fine. Good afternoon, everyone. Let's get the program moving again. I'm Eduardo Saad. I'm currently the chair of the Global Relations Committee for HRS. It's a huge pleasure to be here this afternoon with you with this very well-attended symposium. The program is really great. We have, you know, great panelists, great discussions. So let's enjoy it. So on the second half of this symposium, we're going to have some presentations followed by panel discussion as well. It's been called Towards the Future, Implementation of New Strategies in Sudden Cardiac Death. And we have very exciting things. So our first speaker is Christina Miyake. She's going to talk about strategies in pediatric sudden cardiac death. Christina? Thank you so much, everybody. And it's a pleasure to kind of open up the second session. You know, sudden cardiac death and what we've been hearing thus so far has really been focused a lot on adult data. But as devastating as it is, it's probably magnified when it comes to the death of a young child. Importantly, the causes of sudden cardiac death in children differ from adults. We don't have coronary artery disease. And genetics plays a much more larger role. What I wanted to do now is give you some clinical insights from a pediatric perspective. Okay. So because lethal inherited arrhythmia disorders are common cause of pediatric sudden cardiac death, I believe it's important for pediatric EPs to be key players in the field. For this reason, I wanted to highlight the work being done through I Hope Kids, Array of Hope Foundation, specifically funded to help address challenges in pediatric sudden cardiac death through a collaborative effort of pediatric EPs, families, and community partners. It really brings it back to the patient and to us as a field, really leading new strategies. One of the first challenges that we face is that we don't know the incidence of pediatric cardiac arrest and sudden cardiac death in the U.S. And why is that? And it's really important to know as you're reading a lot of the studies in terms of where the data comes from. Because incidence requires both a numerator and a denominator. That means you need to know all the cardiac arrests that occur, and you need to know all the children. I'm really sorry. This is going berserk. You need to know all of the children at risk in that area. And so here, let's take a look at an example. So there's two cities. One is 66,000. There's six 911 call centers, and those call centers are fielding their own databases and fielding those children to different hospitals and to different medical examiner's offices. So trying to track all that data, every single one, is nearly impossible. So we often take a sampling of it, and that's just a proportion of the data that you're actually going to see. So on the other hand is a single 911 call center that we have in Houston, and there's one medical examiner's office that's covering the entire 4.8 million. That makes studying a population-based study much more accurate in terms of the incidence because you know the number and you know the denominator. So in Houston we've been working, investigators have been working on this, and what we've identified is that the incidence in pediatric patients is 7.7 per 100,000 person years. So I also want to bring light to everyday clinical challenges that we face amongst families, and this is real life. So this is John's family. He comes into clinic two years after the death of their son, John. He had a witnessed arrest at school, and although resuscitated, care was withdrawn on the third hospital day. No answers were ever determined, and autopsy was negative. The family is seeking answers now, and they've heard about genetic testing, but it's been two years. There's no samples left at the medical examiner's office, and the remaining children have a negative workup. But without knowing the cause of the cardiac arrest for their child, we really don't know whether the remaining children are at risk. So this not only causes anxiety in families, but excess costs because we end up surveilling these other children for years. What about survival? So survival in pediatrics is associated just like in adults with witnessed events, in shockable initial rhythms, and with increasing age. So teenagers are going to survive more than infants. I'm not going to talk too much about this because you're going to hear some interesting talks later in the session. So let's take 100 pediatric cardiac arrests. About 70% to 80% of those are going to either be deceased on arrival or they're not going to be able to be resuscitated by EMS. Of those that make it to the hospital, it's about 20% to 25% of the 100%. However, of those, only 70% will actually survive to discharge, and that's pretty dismal. Overall, as you already heard, probably about 10 are going to survive in total of those 100 that had an arrest. 90% are going to end up in the medical examiner's office. So how do we prevent situations like John's family? One way is to create systems and protocols to improve diagnostic evaluation after cardiac arrest, and this starts with communication, communication from the EMS. So here's one thing we could do. We could improve protocols to transfer the emergency medical services information, including their run sheets and their AED rhythm strips, to us clinicians at the hospital. At least in ours and in many hospitals, this isn't done. But those AED strips can have critical information, including, for example, after a shock, bidirectional VT that can make the diagnosis of CPVT in a child who's arrested, even if they don't make it. We also need to find protocols that are standard for evaluation in our hospital after an arrest occurs. So, for example, physicians that aren't aware of the inherited arrhythmias can have a checklist of things that they need to get done in order to make an appropriate workup for patient care. Sadly, most children will go to the medical examiner's office. Here we can make a difference by increasing the diagnosis by making genetic testing more mandatory in the pediatric patients if no diagnosis is found. Families similarly would be counseled regarding the need for screening and offered a way to store DNA for long-term, as you've already heard earlier, some of the issues when those DNA samples are discarded. So let's go back to John's story. What are things that we can do? The I Hope Kid Foundation is tackling this kind of on a grassroots basis. They're offering genetic testing to families within Houston, so all families, and that kind of eliminates some of the inequalities. They also provide DNA storage for these families, even outside of Houston. We've created a registry in order to identify some of these lethal disorders that are causing sudden cardiac death. If we're able to identify more, then maybe we can prevent it. So in summary, kids are not little adults. I have no idea what's going on with my slides. I think in summary, kids are not little adults. We can't extrapolate data from their data, so I think we need to continue to do studies. I think we need to build collaborations across the country and across the globe with like-minded electrophysiologists and our partners, for example, in AHA and the CARES registry. I think we need to implement better protocols that are standardized for workup. And lastly, I think we need to improve genetic testing, make it something that is done for anyone who has a pediatric patient who has an arrest that is unexplained, and make it available for parents to store DNA if they don't find an answer. So thank you so much. Thank you, Christina, for that beautiful talk. So our next speaker is Kyoko Soejima from the Curin University School of Medicine in Japan. She's going to talk to us about strategies in AED use, current landscape, and problem solving. Thank you very much. Thank you. It's a great honor to be here. Okay, I'd like to start my talk by just showing, sharing with you the video. This is a 20-year-old university student who worked as a night shift at a convenient store in Tokyo. As you can see, this is back in 2007 at 1.30 a.m. So after he came back from the break, he collapsed. And there was probably five people in the store at 1.30 a.m. And I think a kind couple came to the cashier and realized the man was lying on the floor. But I think what he should have done is start the CPR. But what happened was he was trying to talk to the man and trying to wake him up. He didn't wake up. So what he did was he called 911, but he didn't even touch the boy. So this is a timeline. So he called the ambulance, and the ambulance came after like seven minutes later. And the EMS arrived, and they realized he's in a shock. He's in arrest. So they defibrillated him. So it took him almost like eight minutes before he got resuscitated, but he survived. So any guess what he had? He had a very strong habit of smoking. He did have a vasospasm. So he came to my hospital, and I gave him an ICD. But he quit the smoking and hasn't had any event after that. So the number of AED installation in Japan has increased dramatically since installation 2004. Right now we have like 690,000 AEDs in the whole country. The stations, schools, and convenience stores, and also some of the local area, they do have vending machine equipped with AED. So availability is pretty good. So this is a comparison between USA, Europe, and Japan. AED by population is, in the U.S., it's 1 AED for 110 people. In Europe, 1 AED for 623 people. And in Japan, it's 1 AED to 182 people. But the survival rate due to AED use was approximately 4.9%. I think there are main issues of AED use in Japan. Number one is a psychological barrier. I think people feel intimidated or feel shy about using AED and insufficient basic life support education in school and public and challenging in children and women. And I think the next speaker will talk about technological So I think I'm gonna cover these four issues. Psychological barriers to use. I think the crucial, important thing is trying to educate the kids, like a school system. So ministry education encourages AED and CPR training at all school levels. And in junior high and high school, AED use and CPR are included in the health and physical education curriculum and hands-on training. Many schools conduct practical training sessions using CPR mannequins. And also, the school encourages students to take formal life-saving courses. like the Japanese Red Cross or local fire department. So these are the young people who were commended. Young providers of BLS. Kids brought an AED to the scene in the city. They are the fourth graders in elementary school. And student who saved the teacher's life with chest compression and use of AED. The teacher must have been really liked by the student. He's a coach, a baseball club coach. And the last one is a son saved his father by chest compression. He's a fifth grader of elementary school. So I think kids can do a lot of work. And this is like a monthly magazine read by the kindergarten student. I think a lot of parents buy this because they want to educate the kids. And we, AED Society, wanted to have a complimentary handmade paper AED. So kids get used to the idea. What does machine do? Because you see all over the city, but the kids doesn't know what they can do. So I think they actually have a toy of AED. You can push the button and they can make the beep. So I think making the kids familiarize with these equipment, it's going to ease the barrier. So I think it's very important for the kids to recognize. And also the website, AEDM, if you access the website, if your location is here, this is my close by to my house. If you click, you have multiple AEDs. And if you push this emergency mode, it's going to automatically connect to the one, it's 119 instead of 911 in Japan. And also, you know, you know the close by AED location. But another app, this is a software for lifesaving supporters. And if you have, say, cardiac arrest at this site, and if you click on AED Navi, it tells you where the nearest AED is, and also how to get to this AED. And also, we do have system for the education as well. But if you take a look, AED Go, this is like a Uber, AED Uber. It is still under construction, but hopefully it's going to be launched in the near future. So if you click on this, what's going to happen is you have witnessed the CPA here, and supporter who's been trained with AED. So they say, he's going to grab this AED and coming. And this supporter is carrying AED, so they can safely get to the site as short as possible. So I think there are a lot of strategies to overcome insufficient training in public education. Site-specific, it's probably easier because you have staff and AED available on site, such as school, sports, stadium, station, airport, hotel. If you do proper training and rehearsal at the site, the survival expected to exceed over 90%. If it is public, it's non-targeted, it's a little bit challenging, but you need to train the people. Go and ask for the AED and bring an AED. And probably use of a social network system for volunteer supporters and education at school and also supporting training supporters. Hopefully the survival rate is go up to above 50%. We have an 18-year history of Tokyo Marathon. We did have a total of. on-site education really important and as they have a Got it from Boston Marathon. I think they did have a mobile squad. It is 22 people We all know that the female survival rate is lower compared to the male. I think one thing is a little bit hesitant, like take off the clothes and put the AED pads, but I think we did have a discussion in the high school, how do you say, like AED symposium. One high school student came up with the idea, why don't we put the wrapping sheets, wrapping sheet inside of AED? And that was the idea of him, and we started doing this for the OED machine. When you open up, there's a sheet coming out. So the sheet says you place it here and compress here, and it's cover up the female body. So that hopefully it's going to improve the female survival rate. So take-home messages to improve the survival rate for out-of-hospital cardiac arrest. It is essential to enhance education and training. Strategically place AED in high-risk areas and develop technology solutions like smartphone app to make AED easier to locate. Also, early education training Thank you very much for your attention. Thank you. I'm Andrew Davis from Melbourne. It's my pleasure to welcome by video from Denmark, Carolina Hansen, who's a professor at the University of Copenhagen. Thank you so much. Neurologic outcome, we only have five to 10. is a proxy for defibrillation, and the problem is... So how do we ensure that bystanders... patients were receiving bystander CPR. So that sort of started multiple initiatives in the community to improve bystander CPR, including mandatory CPR training in schools when acquiring a driver's license, implementation of dispatch assisted CPR, and then lastly the volunteer responder program. And as you can see bystander CPR improved from about 20 to 80 percent, which is still the case today. In the U.S. it's around 40 percent, in most countries below that. Right, so how about bystander defibrillation? That's shown in this figure, which is the proportion of bystander defibrillated patients according to year, also from the Danish Cardiac Arrest Registry. And if you follow the middle line here, that's all patients. You can see how it's flat around two or three percent, which is also the case most of the world today. And then it starts to increase in about 2013. And that's mostly driven by the improvement in cardiac arrest in public spaces, which we believe is associated with the implementation of the nationwide AED registry and lots of campaigns to ask people to register their AEDs and also place them outside so they're accessible 24-7, as you can see here outside this bank. However, although we did see this nice improvement in the public space, but we also saw that for arrests in inside private homes, which is the lower line here, the numbers really didn't change very much. And that's how or why we implemented the Voluntary Responder Program. And after asking the population to move their AEDs outside and register them, we asked them to sign up as volunteer responders, as you can see through these campaigns. That's been an incredible success. Today we have more than 60,000 active volunteer responders. That would be the equivalent of about 3.4 million people in the U.S. They're activated to more than 60% of all arrests and arrive before EMS in about 60% of the cases. We have observed that when they arrive before EMS, there is an increased odds of bystander CPR and bystander defibrillation. However, for outcomes, we're waiting for the results from our randomized trial. It's important to say that in other communities, professional first responders may play a big role, such as fire or police, to arrive with an AED quicker than EMS. For instance, we observed that in North Carolina, where they have a really well-developed professional first responder system, we saw that when first responders defibrillated patients after bystanders initiated CPR, that was associated with improved neurologic outcome. So certainly a strategy for many communities, also in non-urban areas. I also wanted to mention drones for AED delivery. This is from the first reported AED that was delivered by a drone and defibrillated a patient. Sweden is running their program to real cardiac arrests. We have just finished our pilot program in Denmark and it is feasible, but my opinion is certainly not for all cardiac arrests, mostly in suburban or rural areas and not where we will move the needle for the bulk of cardiac arrests. Definitely feasible, but do remember that we still need the bystander to recognize there's an emergency, call the right number and provide. I'm not the only one with technical. So taken together, I'd say our AED volunteer and responder programs have been possible due to multifaceted efforts across the community, such as legislative mandates, organizational changes, support from the population following public campaigns, as well as a strong research tradition. And lastly, I wanted to show you this little guy who was taking a walk around the neighborhood with his mom, who's my friend, and let's see what happened. So we really need to start educating the population early. Thank you so much for your time. Thank you. That's really impressive. So our next speaker is Dr. Cameron Desfouzian from Texas Children's Hospital. He's going to talk to us about strategies in evaluating etiology of certain cardiac death, the missing link, and the chain of survival. Okay. Well, thank you. Thank you to the group here for inviting me. So I'm an adult and pediatric critical care physician. And just out of curiosity, who in the audience is critical care or emergency medicine? So that's what I thought. So if anyone goes down, I got the airway. You guys do compressions in AED. But you'll see why I asked that question in a little bit. So in addition to being in the ICU, I'm also part of the AHA guidelines. And my particular writing group that I chair is the systems of care writing group. So we've been talking a lot about systems, and so that's part of what I want to talk about, is what are some of the systems that we need? I think it's been coming up throughout our talk here, but what are some of the systems we need to really make sure that what we already know and have already published actually is implemented? So this is really more about implementation than about knowledge, because I don't think the knowledge is lacking. So the first thing I think this group knows very well, the difference between OHCA and sudden cardiac arrest. But really what I'm speaking about are sudden and unexpected and, for the most part, undiagnosed cardiac arrests, which need some further evaluation. And if you look in that group of 1 to 35 years old, you can see that although the number is low, it is steadily climbing. So when you get to 33, like the case that we saw, it's actually not an insignificant number. And this adds up, at least in the U.S., based on our population numbers, to about 2,000 dead young people every year. And that's not minor, because these are people at the prime of their lives. People have families and have a whole life to look forward to. And when we look at the etiologies, I think most of you are familiar with the different causes of sudden cardiac death, but I think what's important is that many of these are hereditable and that that proportion, really, there's a breakpoint around 35, where ACS really starts to take over once you get past 35. But when you're in that 1 to 35-year-old age group, you're really talking about a lot of potentially hereditable diseases, which means that this not only impacts the patient, it impacts the whole family. As I mentioned before, there's not a lack of knowledge. I think many of the people in this room have written these papers. And so there's guidelines and there's well-known algorithms for how a sudden cardiac death should be worked up, and yet it doesn't always happen. I pulled one out here, and just to very quickly summarize, you know, if you don't know why someone who's young died, you should autopsy them. And if you autopsy them and you still don't have a cause, you should do a molecular autopsy, right? So you should get genetics and figure it out. And I think everyone in this room would agree with that, and it's evidence-based. It's very reasonable, but how often is it actually happening? So when we look at this survey data from Europe, you see that in up to 40% of cases, and this was across 17 different countries in Europe, autopsies were not performed, right? So there are some countries that do quite well, like Finland, which had 100% in the systematic review, and there's other countries that don't do nearly as well, such as Germany, which was 43%. You know, Germany is not, you know, lacking in resources, right? And then you look at places like Iran, where I was born, and it's at 5%, and China, where most of the world's population is, or at least the single biggest population center, has a 1% all-cause mortality autopsy rate, right? So it's not that we don't know what to do, but it's that we're not doing it. And, you know, I think the thing that's important, getting back to the idea of systems, is that in Finland, autopsy is mandatory, right? You have to do it by law, and so not surprisingly, they have a 100% rate. What about genetics? So, you know, the idea of a molecular autopsy, I think, is something that's a little bit more recent, and because of that, it's also not happening very often. So you can see from this survey data, again, that in many cases, even the folks who are doing the autopsies aren't thinking about genetics, and if you don't have a program at your center or at your hospital, it's very unlikely that you're going to think to consult genetics or to save tissue, as we've talked about, to do the genetics. So we looked at our own data. I'm not sure why some of these numbers got messed up, but this is actually, I think, electrophysiology down here in some language I don't speak. But I think the point we want to make here, and this is data being presented by one of our fellows, Carlos, in a couple days, is that the number of patients, these are now children who have sudden cardiac death, that get cardiac evaluation in our own hospital is actually less than those who get neurologic evaluation. And these are sudden cardiac death, and this is Texas Children's Hospital, which is the biggest children's hospital in the United States. And according to U.S. News and World Report, I think we've been number one for eight years. I hope no one from U.S. News and World Report is here. They might downgrade us. So my point is this happens everywhere if you don't have a good system in place. Now, this is the AHA chain of survival, and the current six-link chain of survival, we've talked about a lot, but I think the two important links is, first of all, many patients die right here at the beginning, okay, so we never get ROSC, and so there needs to be a way to find out why they died. And then you've got the ones that are here in the recovery and post-arrest care period who make it to the hospital and survive, or sometimes die in the hospital, over half of them do, and they also need to be diagnosed. So where within the chain of survival does diagnosis and secondary prevention come in? And unfortunately, at the moment, it's not part of it, right? It should be somewhere around here, but it's really not. And I think part of the problem is that we're talking about silos of people now and specialties, right? The fact that I'm the only critical care physician in the room is indicative because in most critical care conferences, we don't have electrophysiologists. It's not that we don't want you guys there, right? But you don't come because the topics aren't of interest to you, and unfortunately, the crosstalk doesn't happen. And most electrophysiologists operate in spaces that are not critical care areas, right? And personally, I work in the pediatric ICU, the pediatric cardiac ICU, a adult cardiothoracic ICU, and in the past, I've been in a neuro ICU and a medical ICU on the adult side, and I can tell you that in the cardiac ICUs, both pediatric and adult, we think about EP. In all those other units, we don't, okay? Most pediatric cardiac arrests go to the pediatric ICU, not the cardiac, so unless you've already had a congenital diagnosis or known cardiomyopathy, you're going to go to the PICU. Most adults go to the medical ICU or the neuro ICU, not the cardiac ICU, right? So as a result, in this country, and I'm guessing this is the same throughout the world, many adults and children who are in that young adult range, excuse me, are not being cared for in places where there's a lot of crosstalk between EP and the critical care physicians. When we look at the chain of survival, you have to recognize who the people are, so at the beginning of the chain of survival are lay rescuers and EMS folks. Again, how much crosstalk between them and geneticists and EP? Next, you have the emergency room team. How much crosstalk is there between the emergency room and EP? And then finally, the critical care and hospital medicine team. So I would argue that in all these steps, obviously if the patient dies, it goes to the medical examiner. We don't have enough integration between those two silos. This is the sudden cardiac death multidisciplinary team that's been proposed, and I think this is an excellent team, but the problem is that first of all, the team has to exist, right? So many centers, particularly those that are not large, quaternary or tertiary care centers don't have these resources. And then the next thing is that the medical team has to actually think to consult the group. So even if you have it at your hospital, we have it at Texas Children's, right? But you have to think to call them, and that doesn't happen all the time. And the same is true on the side of the medical examiners, right, if this goes to the medical examiner. So I went through all that just to get to this, which is the important part, which is some of the solutions. And I think Dr. Miyake identified some of them, and so did Dr. Chung. And I think the first thing is there has to be better integration of the sudden cardiac death guidelines, which are the ones that I showed you a few slides ago, and the CPR and emergency cardiovascular care guidelines, right? So in the CPR and emergency cardiovascular care guidelines, which is what most of the emergency medicine and critical care medicine folks are looking at, the pediatric section actually includes sudden cardiac death diagnosis guidelines. The adult section doesn't have it, right? And I'm ashamed to say, because I'm the systems of care guideline chair, so I can't blame anybody else but myself, that we didn't put it in the 2025 iteration. So that's already gone off to peer review, and so it's too late. And it wasn't until you invited me to come to this talk that I thought, wait, we didn't talk about that. Is that somewhere in the guidelines? I hope the ALS people talked about it. They didn't. I hope the post-arrest people talked about it. They didn't. And then I realized that we just don't have it there, right? So that's a big problem. We're going to address that problem with a focused update. But my point is that, again, points to the silos that are happening here. There needs to be institutional crosstalk, right? So for all the electrophysiologists that are in the room, if you haven't talked to your emergency medicine and critical care medicine chief, send them an email and say, hey, do we have a program to evaluate sudden cardiac death? You'll be surprised how many of you get the answer, no, we don't. And that's, I think, where it starts. And when Dr. Krein was here earlier and talked about his system, I mean, I think it started there, right? It started with that interaction and then the culture builds. And once the culture is in place, then everyone thinks of it. But unfortunately, at the beginning, someone has to start. And then I think there also needs to be crosstalk at the level of societies and meetings. So the Emergency Cardiovascular Care Committee for the American Heart Association are the ones that write all the CPR guidelines and do all the CPR education really around the whole world, right? And yet, we don't have a representative from HRS as part of ECC, okay? I realize that, again, because when I was asked to give this talk, I emailed the head of ECC and I asked her, do we have an HRS liaison? And the answer was no. So now we're going to get one, right? But these are the kinds of oversights that happen commonly. And as far as meetings go, so, you know, to be full disclosure, I'm the vice chair of the Resuscitation Science Symposium, so I have a vested interest in you knowing about this. But this meeting is dedicated to cardiac arrest and resuscitation, and that's all we do for two days. And it happens at the same time that the American Heart Association meeting happens. And actually, from this point onward, we hope, including this year in New Orleans, it's actually in the same convention center. And if you pay to go to this meeting, you can go to scientific sessions. So hopefully those of you who are going to American Heart, instead of signing up for AHA, you sign up for this, and then you can go to your AHA meetings too, but then you can be a part of the Resuscitation Science Symposium, because we are having a plenary session dedicated to sudden cardiac death because of realizing that this is a big oversight that we're not doing. So I think crosstalk between the organizations and making sure that the people who are caring for the sudden cardiac death in the field and in the hospital are talking to the folks who can do the prevention and the diagnosis, which is so important. Not just for the patient, but obviously for the entire family. So I'll leave off with that. Thank you. So continuing the theme of collaboration, we've got Peter Platanoff from Lund University, and he's going to talk about collaboration with medical examiners between families and physicians. Peter. Thank you very much for the invitation. I'm really going to build up on what the previous speaker has started talking about, about the communication. I think that's going to be my one and the only message after my talk. I was planning to give a Swedish perspective on the issue, and I immediately ended up with a problem that, though Sweden has a publicly funded health care, it's similar to what Julia showed previously in the Canadian perspective. We are divided in several regions with regionalized health care, regionalized financing, and really significant differences in population density, infrastructure. Like most of the people living in Sweden, they live in this area, like two-thirds, and this is a very low dense populated country. The hearts here are university hospitals with genetic labs. So we have seven of them, but family members may live in different regions. And where the investigation of sudden cardiac death cause would occur depends on whether the death was registered within the health care or it was out of hospital cardiac arrest and the resuscitation either was not attempted or the person was pronounced dead on site. In that case, that would end up in the forensic medicine section, which is a completely different organization without any regionalizing, with a single genetic lab and very uniform infrastructure that is completely separate from health care. We realized challenges related to the lack of communication between different specialties, and back in 2012, we initiated the Swedish National Cardiogenetic Network that brings together cardiologists, clinical geneticists, genetic counselors, and pediatric cardiologists to make sure that we understand each other, that we know each other, that we can call to each other, because the families we are evaluating, they are spread across the country. And we needed to establish a framework where we can talk and harmonize the structure and the screening strategy. And really getting to know each other is extremely important, because we are a 10 million country, and we're like seven university hospitals. So we are not that many people. We're doing pretty good when it comes to witness cardiac arrest. This is a screenshot from my smartphone where I registered as a volunteer in CPR. So I had to run twice last year for the call. And this is a map of the ICDs placed in my area in Lund. And Lund is 100,000 big cities, so it's quite a number of ICDs placed out there. If a patient is not getting ROSC on site, then it would probably be connected to some sort of cardiac assist device, and LUCAS stands for Lund University Cardiac Assist System. It's present in many countries. And if a patient is coming to the hospital with LUCAS ongoing, then that patient would most likely end up within the health care evaluation with clinical pathologists in hospital. And from that point, the structure is fairly straightforward. And we issued our first recommendation on a national level in 2010 and revised that a couple of times, with our focus being make sure we collect biological sample, that we can freeze that or extract DNA in order to process that at a later stage if we find it necessary. Because if that is not done at the very first stage of evaluation, people are busy, somebody is dying, and it's very easy to forget that. If it's not that part of protocol, it's not happening. When postmortem is done, then things are completely dependent on what findings are. If there is some other cause of death established, then the patient or case is discharged from a family investigation. If there is a possible genetic cardiac disease, and pathologists should be aware of that, then we may initiate phenotype-based genetic analysis, and that's recommended. Things are maybe a little bit more complicated if we don't have a clear cause of death or it's presumed to be arrhythmic. Then we may need to put some efforts in better phenotype assortment, and based on that, findings go on. I will not go into the details of genetic testing. Next speaker will cover that. Things are completely different if a death case becomes a matter of police investigation, because police is a completely different matter. They are primarily not interested in treating people. They are interested in identifying crimes, finding offenders, and putting them in prison, basically. If somebody is found dead, then the case officer at police is managing the case, and this person is a hub of information flow. Police is contacting the forensic medicine department that has a forensic pathologist that routinely would perform autopsy on a young victim of cardiac arrest, and they have their own genetic lab. Their task is to establish cause of death, define whether it's natural or not, and exclude or confirm suspected crime. Genetic analysis by the medical forensic service would be performed if needed to establish cause of death, but talking to them, it became clear that they are not saving money exactly on that, so they may initiate genetic analysis even when they suspect as a result of autopsy that this may be a genetically determined disease. The result of this investigation comes back to the case officer who further reports that to the family, and family may or may not come in contact with healthcare depending on the findings. There is no legal framework for direct contact between the medical examiners and forensic service with family members or with cardiologists in hospital, so everything goes through the case officer, which is really the hub for the information flow. And to make sure the patients are coming right, there needs to be awareness in the forensic pathology office. They need to be trained to detect cardiac pathology that is with suspected genetic cardiomyopathy, and they need to understand that there may be implications for family members, and it's not merely limited to the exclusion of the crime or confirmation of crime as a cause of death. Then there is an issue with what has to be reported because forensic pathology, they are not obliged by law to report anything to patients or families, so it's really a matter of communication. That's discussions that we have with them every now and then, trying to reach a mutual understanding of what is important or not. Should only positive genetics be reported? And it's important also to add that the genetic analysis may be performed without consent, so it doesn't have to be... And in Denmark, for example, the situation is completely different. There has to be consent from the next of kin to perform genetic analysis on the sudden-death victim. In Sweden, it's not necessary. There are a lot of challenges there, and one of them is that the families, when in the accurate phase of that, they may not be interested to hear anything about genetics. They are so devastated, so that process must be sort of postponed in time, so there has to be a structure that calls and contacts those patients that may be affected by the findings, examinations, either autopsy or genetics. And basically, the case officer at the police department may not be the right person to handle that information. So in the discussions that we've talked to with medical examiner service and forensic people, we have agreed, and that's also regionalised, we agreed on what sort of wording should be put in the autopsy protocol, that there should be some mentioning that these findings may have implications for family members that should come in contact with the cardiology service. To conclude, this is a work in progress, and there is an absolutely long way to go. The legal framework in different countries and in different regions may really impact possibilities for information exchange. If forensic service is not activated, at least in Sweden, there is pretty clear legal framework, we can contact patients, we know what to do. The challenge there is to make sure that we, physicians, at different levels, from emergency care physicians to intensive care physicians to clinical geneticists, cardiologists, we talk to each other, we know what to do in all cases. If forensic sudden and cardiac death cases, it's important to identify the bottlenecks in the information flow and establish clear communication pathway with forensic medicine and define what has to be reported and in what way it has to be reported, so that family members get a clearer picture of what they need to do. Thank you. APPLAUSE Thank you very much. We'll move on to the next presentation. Dr. Elijah Bair from St. George's University of London is going to talk to us on how to implement genetic testing and family screening at a global level. Oh, thank you very much for the honor of being able to speak today at this summit. Sorry, I haven't been able to join you earlier. I'm going to be speaking on how to assess matters genetically, and just to indicate that some of this is a distillation of these various consensus statements and guidelines that you could go back to if you want to read up more from the 2013 HRS-led document, the APHRS-led document in 2020, the ERA-led state of genetic testing document, and then the ESC guidelines and VASCD prevention. And you've already heard the first diagnostic step is autopsy following a sudden unexpected death, where the importance of accurate pathology is clearly important, because you've already seen that the causes of young sudden death, for example, from this Irish survey are predominantly genetic and inheritable, therefore, in their basis, so including cardiomyopathy, premature cardiac disease, often due to familial hypercholesterolemia, and unexplained sudden death, which is termed either sudden arrhythmic death syndrome or autopsy negative sudden unexplained death. The approaches to, therefore, evaluating and understanding these sudden unexpected deaths because of the genetic heritability is the opportunity to diagnose the cause of death with great accuracy that can not only be helpful to identify others at risk, but also give the family some understanding of the etiology of death and give them some psychological benefit and, if not closure, certainly a better understanding of why things happened as such. And part of that approach is to do family evaluation, and the other approach is to do post-mortem genetic testing or molecular autopsy. Now, if the sudden death is explained at autopsy, say, for example, cardiomyopathy, then appropriate evaluation will proceed at a specialist clinic focused to that phenotype, and genetic testing in the sample should also, therefore, undergo phenotype-driven testing, and the yield can be very useful for identifying genetic variants that can then be used immediately in family members to dictate risk. So here we've got a yield of around a third of pathogenic, likely pathogenic variants in cardiomyopathy sudden death cases. In terms of when the autopsy is negative and toxicology is negative, the SADS cases I spoke to you about before, then we go for a different approach, maybe a broader molecular autopsy panel, and this can be as broad as containing both arrhythmia and cardiomyopathy genes, and then if the pathogenic variant is present, one can cascade testing to family members. Data from our group suggests across all age groups, in particular, there's a 13 percent yield of immediately diagnostic pathogenic and likely pathogenic variants that can be used in family members. Now, we always need to assess the circumstances of the sudden death and the context of the sudden death, but also if no autopsy has been undertaken, which we've already been hearing is probably the most common scenario globally, then we need to think about those factors that are going to indicate the potential genetic risk, such as a suspicion of premature sudden death raising genetic heart disease as a concern, or a family history of premature sudden death, or even if there's a family history of inherited heart diseases. And then that may just prompt familial evaluation, which may already be dictated or targeted according to a genetic result, but if not, as is the case in most families, then one would focus testing on the immediate relatives or those who are obliga caries for the condition that you expect to be in the family, or highly symptomatic relatives, but there's a way of trying to gatekeep here to ensure more effective and beneficial testing, and initial evaluation can be on the basis of resting ECG plus higher end ventricular leads, exercise ECG and echocardiogram, and some recommend this absolutely, and some just suggest should be considered, and then additional tests may also be considered based on initial findings. If however you have a high suspicion for Brigada syndrome based on the circumstance of sudden death or the ECG findings in the individual being assessed, then you would consider a sodium channel blocker test early on, but there's also an approach to consider doing provocative testing more systematically that may also be used. Now to point out here when I mention high leads, I'm implying the hybrid ventricle outflow tract leads, leads in the second and third intercostal spaces, because this increases sensitivity for the type one pattern as exemplified by this azimuthaline provocation test where the fourth intercostal space is non-diagnostic between the baseline and azimuthaline, and the second intercostal space is diagnostic. And if one undertakes this comprehensive familial evaluation approach with a low threshold for undertaking sodium channel blocker provocation, then Brigada syndrome is the dominant diagnosis that comes through from family evaluation studies. If we combine family evaluation with post-mortem gene testing, there's a synergistic benefit in that you enhance the number of diagnoses that you make, including enhancing the diagnostic yield for CBVT, long QT, and cardiomyopathy, giving a 50% increase in this study in yield by using a combined approach. And from our latest data from over 760, well just at 760 cases undergoing either family evaluation or molecular diagnosis, or a small number with both, then one sees a continual yield of Brigada syndrome across age groups. One sees a prevalence of long QT syndrome, particularly in the younger age group, and CBVT being particularly important in the child age group. Female decedents are more likely to be associated with a diagnostic yield than male decedents, and male decedents are more common, but most notably with the long QT syndrome. And where the molecular autopsy appears to have greatest benefit is in the younger stage group, or the younger age group. Now we've seen all those data, and we've seen the guidelines. What is the actual evidence of uptake of these? Well, this is an era survey undertaken to study the uptake of autopsy and of post-mortem genetic testing in sudden unexpected death in the young. This is 71 centers responding across Europe. The point here is that only a minority of cases of respondents indicated that either 100% or the majority of their cases underwent autopsy, and then a smaller subset actually underwent post-mortem genetic testing when this death was unexplained, and a much greater proportion autopsy wasn't undertaken or was very unlikely to be undertaken, and the same going for post-mortem genetic testing. If you're not doing the post-mortem, you're unlikely to have a sample. So there's a lot to be done from the point of view of autopsy and uptake of post-mortem gene testing, and the survey also looked at family evaluation. And you can see the ECG and echocardiogram, as I said to you, was part of that recommended set, but so was the excise ECG and the high precordial EDCG, and the uptake there is certainly nowhere near as high. And so, again, there's more work to be done in terms of family evaluation. So how can we improve yield? Well, one is clearly about autopsy provision, so we can retain the DNA for post-mortem gene testing, but then who actually funds it? And we can talk about the different approaches to that, and I can give you the UK position if that's of interest when we have our case discussion. It requires engagement with the coroner medical examiner, and if that engagement isn't there because there isn't the law available to do so, then the legislature needs to be engaged with, and often that needs to be driven by patients and families, and that's happened in Denmark, and that has mandated testing in the under-50s. In terms of the strategy, post-mortem gene testing should be targeted to phenotype to make it more effective and less wasteful, and also targeted more towards the young SADS cases, and can be combined with clinical testing to give the best value, but again, clinical testing should be targeted to phenotype to, again, minimize wasteful use of investigations, and in female SADS cases, the long QT syndrome has to be considered at the top of the list, and in children, CBBT, and the excise ECG is therefore vital as part of that evaluation, and in Bregada syndrome, if you want to diagnose Bregada, then I think you have to use high RV leads and consider sodium channel blocker testing, and we can debate now if that's something you want to diagnose or not. Education to ensure uptake of these guideline recommendations is therefore critical from the family evaluation perspective. Thank you for your attention. Thank you, Elijah. It's my great pleasure to introduce my friend, Greg Webster, who's the chief of paediatric EP at the Liberty Children's Hospital in Chicago, and he's got a passion about cardiac genetics and preventing sudden cardiac death, and Greg. Thank you. Thank you for inviting me. Got it. Well, I have been given the task to talk about strategies for research and data, establishing registries and collaborative research. And the people in this room still sticking it out to the last session of the global summit, this kind of speaking of the global concept, there is a 17th century English idiom, which is don't teach your grandmother to suck eggs. This group of people may not need a deep lecture on how to collaborate with one another. By definition, you're here. So what I'm going to try to do instead is talk about the scope of collaborations that are available to us and to think critically about how do we want to approach that moving forward. So I'm going to talk about local data, disease-specific collaboration, partnerships, and then the concept of harmonization of data. I figured we would hear a lot about sudden unexplained death, but I want to point out that our field is actually quite old. We've been trying to figure out how to prevent death in heart disease for a long time. These are data kind of halfway through that big cycle for congenital heart disease surgeries where people were dying because of congenital heart disease, heart block after surgeries. And there was a single center study that said we're going to figure out with just the patients in front of us how long should you wait before you pace people. And one person generated these data, Dr. Weindling. And here we are 30, 35 years later, and these data have held up over time. Single center studies matter. And in particular, they're often the pearl that gradually becomes these bigger collaborations. The work that's been done recently in calcium release deficiency syndrome where there was an initial observation that could be rapidly transmitted to a bigger disease-specific collaboration. I happen to know Mohamed Mohsen from Pakistan right now is working on a single center work explaining about heterozygous patients with calsequestrin variants. So this idea that you as a single center can't be a collaborator, sometimes those initial descriptions are in fact what generate these collaborations. So sometimes we need to start close to home. And then it would be a shame not to point out that disease-specific registries are important. A lot of what we have learned in the field of sudden death has happened because of the disease-specific registry. The International Long QT Registry started in the 1970s, and then more recently the International Calmodulin Registry established in 2015. I've already mentioned some of the others. This idea of identifying a disease and digging deeply into what is important. And those are investigator-initiated efforts. But more recently there have been efforts that are family partnerships. And I Hope Kids, which Dr. Miyake said early on, is a family-centered sudden death international collaboration. The Brett Boyer Foundation is a family partnership. And gradually what we see is that this ability to start in our centers and then gradually move to investigator-initiated disease-specific opportunities, and then eventually to family and other partnerships, can actually end up at a global scale. And this is a global seminar, so I want to talk a little bit about the global scale of the issue. So this is the FIFA Sudden Death Registry. For those of you who do not know what FIFA is, here in the United States we would call it soccer. Everywhere else they would call it football. The authors of this paper are from Germany, and they go out of their way to point out that American football is not allowed in this registry. And they looked at places where people play soccer, and then they looked at sudden death on the soccer field. Football field. And one of the points that they made has been made throughout this talk, and probably most eloquently in the previous session in the YouTube video that was playing, or the video that was playing, that the frequency of successful resuscitation is highly dependent on geography. And so in North America and in Australia, we're getting near 50% on the soccer field. Remember, these are soccer-slash-football-specific data. And then in areas like South America and Africa, the frequency of successful resuscitation on the soccer field is much lower, and this means we need to do something to find a global solution to this. And here they took a look and they said, okay, when there is out-of-hospital cardiopulmonary resuscitation, again, on the pitch, who responds? And players are the first responders. I mean, that makes sense. The players are standing right there. But the success of out-of-hospital cardiopulmonary resuscitation, when the players are the ones who respond, has a survival of about 22%. So this tells us who's showing up, who's there. We need to improve player skills, or maybe specifically resuscitation skills. Many FIFA players are already quite good at some skills. And I think as we step back and take a global perspective, some of the other data that's important here is that physician responders have about a 45% success rate. Nursing responders have about a 75% success rate. That should give us all a moment of pause and look at our colleagues around us and recognize our strengths and limitations. But in a global perspective, there are many more people who have undergone nursing training on a global perspective than there are people who have undergone physician training. And the fact that the nurses are better at it, I'm showing you data from FIFA, but truthfully, these data are present in multiple community partnerships. The fact that nurses are better at it and we train more nurses should tell us something about where our efforts should go when we think about global resuscitation. I will tell you, by the way, so that I don't get things thrown at me as I walk out, these are data that are in general. There are circumstances that these data are not always the case. There are many physicians who are exceptionally good at resuscitation, especially in systems. I'm going to shift gears. Maybe big data is what you do with it rather than where it's from. It would be an almost speaker malpractice not to mention AI as a current process of collaboration. Here's data from the Mayo Clinic where they looked at an AI-based neural network to detect hypertrophic cardiomyopathy from ECGs. And this looks at 73,000 controls and 2,800 adult patients with ACE-GM. And here's the model performance. And I'm giving you a very basic summary of the model performance. If you're interested, the authors provide AUC and a bunch of other quantitative performance data. But this is the model output to suggest the probability of HCM. And to the left of this graph is the probability that you have HCM shown in red. And to the right of this graph is the probability that you don't have HCM. And notice that there's almost no blue to the left of the graph, meaning that this AI is exceptionally good at eliminating false positives, which is good on a screening test. And if you think of places where you may or may not be able to get personnel on the ground to do screening, if you are able to do ECGs and then you are able to apply an AI model, it is a lot easier to apply an AI model recognizing that it won't be perfect than it is to teach someone to understand and interpret the Seattle criteria. The Seattle criteria are great, but they take an enormous amount of effort before you can apply them. And that means learning what ECGs are, learning how to interpret them, learning how to do these, and then how to put that information together. So this is an opportunity to think collaboratively about how do we improve screening without thinking about how to train every person to be able to do the Seattle criteria. Finally, I'm going to talk about harmonization. So one of the things that has happened, and we heard a lot about this from other speakers, is there are many people who have started to gather data. And those data sometimes harmonize, those data sometimes can be compared against each other, and sometimes they can't. And so Sara Pasquale has been leading the Cardiac Network's United effort, which is a giant effort to take many of the pediatric-focused registries and data collections and prospective studies and to do data coordination and harmonization so that you can analyze across datasets. Well, this is incredibly important in the world of sudden death, because what we've heard over and over throughout the entire two sessions is how hard it is to get reliable, high-volume output data across multiple venues, multiple administrative sets, and multiple different types. So this idea of harmonizing data is the next stage of collaboration. And although there are many other examples, I want to highlight the All of Us Research Program, which is a precision medicine initiative supported by the NIH. And this is adult participants that were recruited across 61 health provider organizations and 350 community partners. So this idea of data harmonization was the central problem of extracting phenotype data from a very complicated network. And I won't go into this in micro-detail, except to say that allowed them to go from 400,000 participants enrolled and still have 100,000 participants that both had whole genome sequencing and very detailed EHR data. And Elijah Baer gave us some information about the stratification of genetics across the population by age, with CPVT happening in younger folks. And we heard data about what happens after you're 35 in terms of coronary artery disease. This ability to start stratifying genetic results across age, and this particular graph shows a hazard ratio with monogenetic variants associating with early onset in this particular case of atrial fibrillation. The ability to use age as a filter for monogenetic variation requires big data sets, and that requires this harmonization. So what am I implying? I'm not suggesting that there's an easy way for us to do big data together and just say, hey, we've been talking about this for 25 years, let's just turn this key and we'll be able to do it. That's not the case. Number one, I would say we should all be continuing to look for unique, important local data. These are the studies that establish the questions we can conquer at scale. It's important to remember the traditional disease-specific collaboration has been the benchmark for how we actually get data, and it's not likely that that's going to entirely go away. And this meeting and others like it is an opportunity to build those collaborations. And finally, we can think more, or second to finally, I guess, we can think more commonly and more broadly about partnerships. How do we partner with families? How do we partner with organizations where other people are establishing it for us? And then how do we partner with big, globally-reached organizations like FIFA, places that we can extract data and do something meaningful with it? And finally, large-scale data needs to be harmonized internationally. We can learn a lot from the Danes. We can learn a lot from individual people who are gathering data, but not nearly as much as when we start investing money to harmonize data across organizations. Thank you very much. Thank you. It's a beautiful talk. So I think we have five minutes for discussion between the panel. And the first thing I think I would just say, I mean, if anybody on the audience wants to ask something or make a commentary, please come to the microphone. I'll just get started real quick, just saying that, you know, I was very impressed, Kiyoko, with that I just said, the Uber AED type of thing, I think, and the school education. I think at the Brazilian Society of Arrhythmias, we have, since 2007, we could actually get an official date. So every year is the same date. It's a Ministry of Health-based campaign of prevention of sudden cardiac death. So we try to engage in, you know, sometimes people that are well known in the country, sports people, politicians, musicians, whatever. So we try to engage in hospitals and airports, you know, trying to make it public. But to be quite frank with you, after 15 years doing it, I don't think that the impact is really significant. Maybe what you showed us today, you know, going to schools on a consistent basis and get these children educated and re-educated over time, may be more effective than anything else. Yeah, I think the biggest problem is sudden cardiac death. Like, the majority happens in-house, at home. So I think it's important to educate the public, but in the house, probably I think what you need to do is educate your family, and if anything happens, how to react, and you need to know where is the nearest AED available to your house. So I think that's very important. But then you need to have the AED. So in Brazil, or maybe in Africa, there's quite a few. Please go ahead. Hi, I'm Mike Egan with Medtronic. So looking at the chain of survival, you know, for adults, for pediatrics, where do you see... I can throw out a couple thoughts on that. So first of all, you know, AEDs are awesome, but we've all talked about how it's a challenge to know where they are. People are buying them and putting them places, and they obviously have a battery, and in theory they have the ability to hook up to Wi-Fi and tell us where they are, but no one puts that into their AED, right? So I think one thing that you guys could do is just create a system so that your device can tell us, A, when the battery is low, and, B, where it's located, so that it can then integrate into a system, so that, you know, I mean, you saw, I think you showed three million AEDs in the U.S., but the truth is we know where about 200,000 of them are, right, so it's not helpful if someone has it in their shop, and then that shop is closed after hours, or no one knows which hallway to go down to pull it out. So I think that's a big part as far as industry. And then the other, you know, parts is the different devices like AICDs, pacers, et cetera, which also don't have notification ability built in right now, where now notifications become so easy, you know, to let us know that someone is pulseless or in a lethal... Elijah, what percentage of the time do you think that cascade testing is done properly? Because we're, you know, where people are screening at football matches and everywhere, but if we've got someone who's got a 50-50 chance of having the problem, shouldn't we really be aggressively going after those people? So, on the base that you've identified something genetic already? Well, I think it depends on your medical system, doesn't it? And, I mean, I can speak from a UK experience and say it's very heterogeneous. And it's getting a lot better because of initiatives based around ensuring the uptake of genomic testing. So, in the UK, the NHS is now providing the funding for all genomic testing across a directory of tests that includes all the cardiac genetic disorders and unexplained sudden death and unexplained cardiac arrest. So, there is a whole systematic process now going on for national rollout. We did a pilot study and now rolling it out nationally for sudden cardiac deaths, whereby there is a regional coordinator, usually a genetic nurse, sometimes a genetic counselor, who intercedes with the coroner and the coroner's pathologist and with the medical services, so it engages the family into the medical services very early on. And I think that's the big challenge, is engagement between coronial services and medical services and ensuring the family is given that opportunity to engage very early on, give consent for attention of tissue samples and engage with the screening process, or given the opportunity to come back when they feel able to do so. And part of that is giving all the written documentation to the coroner's team so they don't have to reiterate it, educating them, and it actually makes it easier for them because they don't have to rework the wheel every time they get a family coming through. So, I think it's about doing systematic national or regional processes. Obviously, in a country as big as the USA, it could be a California approach or it could be a Texas approach. It has to vary. But the real challenge is those countries where there's no real access to autopsy because if you've got no access to autopsy, you've got nowhere to go with actually identifying what's likely to be genetic. So, I think that's the biggest hurdle before you even get to assessing families. So, I hope I answered that in some ways. I think we have one last question, please. Yes, I would like to thank you for this second session which gave us light. I started by the dark part of Africa and you gave us, you paved us the way, you showed us how to do. And this is the communication of the Global Partner Summit. So, thank you for this part because now I know how to go in the pathway to build this service in my country. Thank you. Thank you very much. On behalf of the Global Relations Committee and Christina and I, thank you very much. Christina, thank you for putting this program together. It was really amazing. And I hope to keep going next year, right, Michelle? All right. Thank you very much for the attendance. It was a great session. Thank you all. Thank you.

HRS 2025 Global Summit

sudden cardiac death

pediatric cardiac arrest

genetic testing

AED use

I Hope Kids

Japan AED education

Uber-style AED delivery

volunteer responder program

bystander CPR

electrophysiology and critical care

family screening

disease-specific registries

international partnerships

data harmonization