Director, Comprehensive Epilepsy Center, NYU Langone Health

Orrin Devinsky, MD

"We’ve surveyed neurologists, epileptologists, [and] patients, and it’s terrible. Many more know about it [SUDEP] because we as a community have risen up, but the patient community has been the leader here, not the neurology community. Unfortunately, it remains something where the basic information is not known."

In recent years, there has been a growing amount of research dedicated towards sudden unexpected death in epilepsy (SUDEP) and trying to understand the underpinnings of how the event occurs and who may be at the greatest risk. Orrin Devinsky, MD, has been among the most notable names to influence the SUDEP research space, especially with his recent work identifying heart rate variability as a potential biomarker. Earlier this year, he was a senior author on a paper that found 

 to be poorly low in adult neurology trainees.

Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone, and professor of neurology, NYU Grossman School of Medicine, feels as though it’s time to start pivoting from research, to creating substantial change. In an interview with 

he shared his displeasure with the lack of SUDEP education and the need to improve those rates, first and foremost. He also discussed future thoughts on the necessary steps to create additional momentum within the space as well as why conversations with patients on SUDEP will help improve their overall risk.

Videos

The director of the Comprehensive Epilepsy Center at NYU Langone provided closing thoughts on how clinicians can begin to shift gears from research to prevention of SUDEP. [WATCH TIME: 2 minutes]

Forward Thinking to Improve SUDEP Prevention, Awareness: Orrin Devinsky, MD

"You design a trial where one group gets the education, and the other group gets the seizure detection watch with someone nearby. If you could prove that [the detection of HRV] worked, then it not only will become something insurances cover much more readily, but it can become the standard of care and allow a bit of pressure on not just epilepsy specialists, but neurologists in general, to prescribe it and use it. But we’re not there yet.”

Recently published research found heart rate variability (HRV), a simple diagnostic measure of cardiac autonomic function, to potentially help identify patients with epilepsy at risk for sudden unexpected death (SUDEP). Reduced low-frequency power, a validated biomarker for sudden death in patients with heart disease, was associated with SUDEP risk when measured during wakefulness in individuals with epilepsy.

, noted that these findings are crucial for the community as there has been little to no direction in who may be more at risk for SUDEP. The study featured 31 SUDEP cases and 56 controls, which Devinsky said need further validation in larger settings. Even then, the finding opens a massive wormhole of opportunities for clinicians to explore more about the associations between HRV and SUDEP, and ways the biomarker can be used to prevent it from occurring.

Devinsky, director of the Comprehensive Epilepsy Center at 

, provided insight on how this new biomarker impacts the SUDEP research space, including the inclusion and exclusion criteria for clinical trials. He also touched upon whether literature has indicated different HRVs for epilepsy subtypes, as well as which direction he plans to take his research next.

The director of the Comprehensive Epilepsy Center at NYU Langone discussed the necessary steps in validating and utilizing heart rate variability as a biomarker for SUDEP. [WATCH TIME: 3 minutes]

Role Heart Rate Variability Plays in SUDEP Research, Prevention: Orrin Devinsky, MD

"We don’t have clinical trial data to prove that they [seizure-detecting devices] will reduce the risk of SUDEP, but we believe they will. It makes perfect sense. We know that a big risk factor for SUDEP is having a nighttime seizure and not being supervised.”

For years, the epilepsy community has tirelessly attempted to understand the origins of sudden expected death in epilepsy (SUDEP) and the underlying triggers that may lead up to the event. It has been hypothesized that certain forms of refractory epilepsy may be at more risk, however, there is no concrete evidence to back these thoughts. While there are no FDA-approved medications to prevent SUDEP, researchers have tried to identify candidates who might be at high-risk using biomarkers, although there has been little ground gained until now.

Findings from a recently published retrospective, nested case-control study found an association between short-term heart rate variability and SUDEP. Senior author 

, has been a leader within the research community and feels as though these results carry significant weight.

, sat down to discuss whether these results have any implications on future seizure-detecting devices. He also provided insight on what other studies have observed and the staggering rate of SUDEP cases that are in isolated settings.

The director of the Comprehensive Epilepsy Center at NYU Langone provided insight on whether a newly discovered biomarker can play a role in the creation of modalities to detect SUDEP risk. [WATCH TIME: 3 minutes]

Heart Rate Variability’s Role in Potential SUDEP-Predicting Modalities: Orrin Devinsky, MD

"If only we could have a biomarker that says, ‘This looks like a well-controlled person who should be at low-risk but might actually be at high-risk based on their heart rate variability or other markers.’ The only biomarker that’s been proposed, has some support, and makes logical sense, is post ictal EEG suppression."

Sudden unexplained death in epilepsy (SUDEP) affects nearly 3000 individuals each year and remains among the most complicated events to tackle in epilepsy care. While there are no FDA-approved medications to treat SUDEP, clinicians have focused on controlling patient’s seizures to try to reduce the risk. In the largest SUDEP biomarker study conducted to date, senior author 

, and colleagues found an association between short-term heart rate variability and SUDEP.

The study featured 31 SUDEP cases and 56 controls. Investigators found normalized low-frequency power (LFP) to be lower in SUDEP cases (median, 42.5 [interquartile range (IQR), 32.6-52.6]) than epilepsy controls (median, 55.5 [IQR, 40.7-68.9]; 

= .015; critical value = 0.025). Additionally, there was a negative correlation between LFP and the latency to SUDEP, where each 1% incremental reduction in normalized LFP conferred a 2.7% (95% CI, 0.95-0.995) decrease in the latency to SUDEP (

Devinsky, director, Comprehensive Epilepsy Center, 

, feels as though these results carry extreme weight, being that the community has struggled to find a biomarker for SUDEP. He sat down with 

to discuss the reasons for conducting this study, the critical clinical implications the results bear, and how they can continue to build upon these findings.

Sivathamboo S, Friedman D, Laze J, et al. Association of short-term heart rate variability and sudden unexpected death in epilepsy. 

Published online October 14, 2021. Doi:10.1212/WNL.0000000000012946

The director of the Comprehensive Epilepsy Center at NYU Langone discussed the critical findings on how heart rate variability may stratify individual SUDEP risk. [WATCH TIME: 4 minutes]

Short-Term Heart Rate Variability as a Biomarker for SUDEP: Orrin Devinsky, MD

"We have resources on there. We’re also linking out to the Epilepsy Foundation’s resources as well as specific resources just for the very severe cases.”

As a way to raise awareness of the importance of seizure action plans (SAPs), the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, and Tuberous Sclerosis Alliance came together to launch the inaugural SAP Awareness Week, an initiative that was held from February 8 to 15, 2021. The collaboration of the 3 advocacy organizations, titled the SAP Coalition, featured a social media campaign and new website designed to highlight the need for these plans for patients with epilepsy, especially should an emergency occur.

In efforts to continue these ongoing conversations, 

 hosted a roundtable discussion with multiple notable leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, LGS Foundation, all participated in the multi-segment conversation.

In this fifth segment, Salazar gives her thoughts on the benefits of utilizing an advocacy organization as a resource when constructing or updating an SAP. She also details how their role can be crucial for both a parent and patient perspective.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how advocacy organizations can help guide patients with epilepsy and their caregivers with a seizure action plan.

Role of Advocacy Organizations in Seizure Action Plans, Seizure Education

"Things change. A seizure action play is not something that you are required to visit only once a year. Seizure patterns change. Seizure types, seizure frequencies change. It is important to see your provider if these sorts of things change.”

The differences in seizure action plans (SAPs) for children as compared to adults with epilepsy can be staggering. Oftentimes children will have their SAP developed shortly after birth and must maintain and update them as a requirement for parts of schooling. Children can struggle with fully understanding their condition, how their seizures can evolve, and what to do during an emergency setting.

For adults, though, they may have left their parents for a job or educational reasons and now live alone. The lack of resources or caregivers at the disposal for adult with epilepsy can definitely raise the need for a more constructed SAP, according to Orrin Devinsky, MD. Devinsky, the director of the Comprehensive Epilepsy Center at NYU Langone, along with other epilepsy specialists, feel as though the important question when developing an SAP is “who is around?”

In efforts to raise awareness about SAPs as part of the inaugural SAP Awareness Week, 

hosted a roundtable discussion that included Devinsky, along with Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital, and Tracy Salazar, PhD, executive director, Lennox-Gastaut Syndrome (LGS) Foundation.

In the fourth segment, the panel discussed the differences in seizure action plans as a child enters adulthood, the need for constant adjusting and monitoring, and why the resources around a patient with epilepsy will help tailor their SAP going forward.



A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how seizure action plans change from pediatrics to adults and the need for adjustments.

Adjusting Seizure Action Plans With Age

"Certain conditions are more prone to go into status epilepticus or other types of emergencies. Obviously, Lennox-Gastaut [syndrome] is a great example. Dravet syndrome is another fine example.”

Epilepsy isn’t a single disease or condition. There are many types of epilepsy with different symptoms and patterns. Within these epileptic groups, there is also a range of seizure types, the frequency in which they occur, and the methods in which they are treated. Some epileptic types are considered more severe and can encounter a greater number of seizures or require a certain number of rescue medications compared to others.

With that in mind, from a caregiver perspective, developing and tailoring a seizure action plan (SAP) to an given patient with epilepsy may lead to better response when seizures occur and even more situational awareness on whether to refer to paramedics.

As part of SAP Awareness Week, February 8 to 15, 2021, 

 hosted a roundtable discussion with multiple leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, Lennox-Gastaut Syndrome Foundation, all participated in the multi-segment conversation.

The third segment of this discussion deals with how SAPs can vary across epilepsy types, and why even patients without epilepsy should understand what do to do if someone around them is having a seizure.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details the way seizure action plans can differ depending on seizure phenotype and frequency of seizures.

Differentiating Seizure Action Plans by Epilepsy Type

"Adults should know, and more importantly, the people around them should know what to do.”

In a recent study, only 30% of adult patients with epilepsy responded that they have a seizure action plan (SAP), and only 45% of pediatric patients had an SAP. While adults with epilepsy will have very differently developed SAPs than pediatric patients, the importance of maintaining and adjusting an SAP as a patient gets older is still critical.

Developing an SAP can provide clarification on patient and caregiver concerns, such as understanding what to do during a seizure, when watchful waiting is appropriate, when to intervene with at-home rescue medication, when to call 911 or go to the hospital, and much more. For adults with epilepsy, they may have moved away from their parents and are now responsible for their own actions with no caregiver around them.

As part of SAP Awareness Week, February 8 to 15, 2021, 

 hosted a roundtable discussion with multiple leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, LGS Foundation, all participated in the multi-segment conversation.

The second segment of the discussion is centered around the need to improve SAP rates among adults with epilepsy, and why the importance of them does not deteriorate as a patient gets older.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the staggeringly low percentage of adults with epilepsy who have seizure action plans.

Improving the Rates of Seizure Action Plan Usage in Adults With Epilepsy

"Every kid is different. What needs action for every kid is different. Understanding for that individual, what is an emergency situation, what is different for their epilepsy and what needs intervention is really important. That’s another thing that seizure action plans bring.”

The inaugural Seizure Action Plan (SAP) Awareness Week, February 8 to 15, 2021, is an initiative to raise awareness about the importance of developing SAPs for patients with epilepsy and their caregivers. Organized by the SAP Coalition, which is a collaboration of the Dravet Syndrome Foundation, the Lennox-Gastaut Syndrome (LGS) Foundation, and the Tuberous Sclerosis Alliance, the initiative features a social media campaign and new website designed to highlight the need for these plans, especially should an emergency occur.