A male doctor in scrubs analyzing brain scans on his computer.

Webinar: Transforming Data into Seizure Control with Learning Healthcare Systems

“Learning healthcare systems” is a method of improving clinical outcomes in patients by collecting and analyzing privatized electronic health data, then rapidly disseminating findings to change medical practices.  This approach is highly collaborative, bringing together patients, families, doctors, and researchers from institutions around the country and even globally.

Two learning healthcare system initiatives are actively working towards this goal specifically for people with epilepsy, one focused on care for adults and one focused on care for children.

This webinar will discuss the progress and potential impact of the Pediatric Epilepsy Learning Healthcare System to epilepsy patients, their families, and to the entire epilepsy research community. At the end of the presentation, audience viewers asked Dr. Zach Grinspan questions on how data and collaboration is being used to improve patient care and outcomes.

You can find a transcript of the audience Q&A below.

Dr. Zach Grinspan

This webinar is presented by Dr. Zach Grinspan, Associate Professor of Population Health Sciences and Pediatrics, and Director of Pediatric Epilepsy at Weill Cornell Medicine.  He is primary investigator of the Pediatric Epilepsy Learning Healthcare System project and the Rare Epilepsies in New York City project, and currently serves as chair of the steering committee for the Pediatric Epilepsy Research Consortium.

Audience Q&A with Dr. Grinspan

From a digital perspective, what are your biggest data-gathering needs at this point?

Let me be a little wordy with my response. We’ve had many conversations with IT groups around the country about how do we standardize process of getting electronic health records. Other groups have done that and I think we need to get better at that.

Right now, it’s a lot of phone calls and a lot of specifications. It works. We’re getting there, but we could certainly be more efficient. We have a good system to transfer the data. Now that we have the data, we’re starting to run into some bottlenecks with the processing. We have one analyst working through it. As we scale up, we’ll need more people processing the data and getting it ready. A lot of the technology is free, so we have a good pipeline to get the reports out.

We have electronic health record system questionnaires deploying over the next few months. Epic is going to release our questions this month. Cerner is not far behind, and someone has already built the questionnaires in Athena. We’ll want to expand to other electronic health record vendors, because we really want to be vendor agnostic. Then, we’d like to bring more data in.

Data from EEGs, MRIs, devices, and patient-reported outcomes would be amazing. People who wear devices are walking around collecting data moment to moment with an RNS or a VNS, and so we want to explore partnering or working together to include that data. Some of it is humanware. I think technology is relatively straightforward. It’s just a matter of all of the conversations and figuring out how to get the data out, move it, and link it.

Have advancements in implants, watches, and other devices helped you understand more about medication efficacy for patients? Has this new data increased the whole picture of an epilepsy patient’s day and changed the way you view potential versus multi-drug prescription regimens?

It’s a great question, because what it gets at is that, in the digitized world, you have people who are creating oceans of data, begging the question, “Can we do anything with it?” For some patients, the answer is absolutely. Certain kinds of data, like VNS and RNS data, can help doctors make very targeted changes. The question is, how do we scale that process and how do we learn from it? And the question is very compelling. We are not there yet, because we don’t quite know how to do this yet at scale. It’s a long-term goal of ours.

Can the collected, aggregated data be individualized? Or can that data be available to doctors and patients for a fee? For example, if RNS data is collected, would somebody need to pay in order to see their own data?

I’ve never had anyone ask me for a copy of their VNS or RNS data. It’s certainly doable and the data is, after all, coming from the patient. I don’t see any obstacle to that.

Other learning health systems use identified data, so their databases know your name, date of birth, everything. These systems actually do provide as the questioner poses direct services. “Here is a patient-level report about how your patient is doing.”

We shied away from that for privacy reasons. Data breaches can be devastating for so many reasons, so we opted to use less personalized data. We don’t know anyone’s name, date of birth… we do know zip codes, but we don’t know where patients live or their medical record number. That was intentional.

Our thought process here is that we can send information to individual centers, which can identify the patient. The report might say, “Patient ABC had this happen.” Then the center has the ability to say, “ABC is actually John Smith.” They have to do that extra step. I don’t know it’s John Smith. I know it’s ABC.

This method helps make the data more secure, but we’re very much about data sharing, and so we have promised all of our collaborators that they can have their own data with no questions asked. We’ll just give it back to them. We’ve crunched it and processed it a little bit because we want to promote your new faculty, we want to promote residents, and fellows who do research projects. Then, for the network, if one investigator says, “I have an idea. It works on my own data. Can I do it on everyone else’s data?” Then, we have a very straightforward process to allow that to happen, too. We really all want to learn together.

You’ve talked about data sharing. Will data sets be made publicly available?

I don’t think we’ve thought about that really. The data sets we have qualify as limited protected health information (PHI), so we can’t share information like dates of birth and zip codes. But the full data sets… I mean, theoretically we could. I think we’d have to talk and think a bit more about that.

A lot of networks want to make sure that patient data is used for a purpose that’s aligned with the mission of the organization, so there’s often a process. We don’t have such a process in place right now, but if that became something of interest to the community, there’s no reason we couldn’t start planning.

How have you had to overcome the barriers of institutions not wanting to share their data with other institutions?

I thought that was going to be a huge problem, but it doesn’t seem to be an issue. Everyone’s so happy to share. It’s really nice. As much as I’d like to say I’m a pioneer, I’m not. People have been working on this in other fields for more than a decade, so the ground has really shifted and we’re in a new world.

The Pediatric Hospital Inpatient System has data from roughly 45 centers, including data from Cornell, Columbia, NYU… and you can walk from one to the next in an hour. I think that the culture, particularly in pediatric hospitals, is very mission-driven, so these potential issues of competition and “you can’t have my data” has just not been a problem.

What are you doing to monitor and measure the impact of diet on seizure control?

It’s not easy to figure out who is on an epilepsy-related diet and who isn’t from the data we have. I showed you that one question about the seizure frequency, but we built in some questions also about diet. It’s pretty epilepsy-specific, so the options we list are the ketogenic diet and modified Atkins, low glycemic index, or other. That’ll give us some high-level information about who’s on what diet, if it’s working, and similar information. More detailed information about specific foods and specific exposures would mean a whole different level of data collection.

Are you familiar with the Observational Health Data Sciences and Informatics (OHDSI)?

Let me nerd out for a bit! One of the major questions we’ve had is, “What does a tables look like in the database?” A lot of people have spent whole careers thinking about that for health data. The Patient-Centered Outcomes Research Institute, has advocated use of PCORnet, the PCORnet Common Data Model.

Our data looks a little bit more like PCORnet mixed with the OMOP model. Currently, our data model is our own, which could be sort of seen as a simplified version of OMOP and PCORnet. What we told our sites is, “If you have the data in PCORnet or if you have the data in OMOP, just send that. Don’t reinvent the wheel.” No one’s taken us up on the offer, so it seems like operationally, a lot of the sites are finding it easier just to kind of make a custom extract for us and just sending us what we want, which we’ve been fine with.

Would it be beneficial for a healthcare provider to have the PELHS questions answered before the visit versus during the visit?

Yes and no. We really want curated data reviewed by a clinician. The workflow that this question proposes is a good one, in which the parents or the young adult enters the data in prior to the visit, and then the clinician and the family review it together. That would be totally okay!

We’ve spoken with Rob Moss, who runs SeizureTracker, and he’s very excited about this idea. He’s been working to link his application with Epic, which is one of the electronic health record vendors. What we’ve asked is, “If you get that workflow there, can the SeizureTracker data populate the learning healthcare system data?” We’re agnostic on how the data gets into the system. If the data gets in there and the clinician vouches for it, then we’re good.

Are patients and their families aware you are collecting these data? How do they feel about participating?

We’ve been very deliberate from the beginning in maintaining communication with advocacy groups and including parents and people with epilepsy at the highest levels involved in developing this system, so there are representatives. That being said, if a parent bring their child to one of the centers involved in this project, they wouldn’t know that the information from that visit is being brought into our Learning Healthcare System.

The reason we forgo getting patient and caregiver consent is that the labor required is too much work for the kind of data we’re gathering. The way electronic health record data is used for research in this country tends to support that. Institutional review boards granted us an exemption from the federal regulations from HIPAA, which allows us to look at the data without getting explicit permission from a hundred thousand people.

We’re comfortable with because we feel the good things we’re going to learn far outweighs the risk to loss of privacy. We’ve been quite intentional, as I said, about making sure that the data that we have doesn’t have a lot of personal information – no names, no addresses. We have dates of birth, but lots of people share same dates of birth. When we’ve spoken to advocacy groups, most people are in agreement that the labor required is too much work to get those consents. We’d spend all of our effort doing that and the groups would rather us do the learning . We got all of the approvals. We have data use agreements. We have all of the legal and ethical infrastructure, but it’s true that you wouldn’t know that your data is going to be in there necessarily.

How have you involved patients in designing this system, the process, and the governance? Are differences between the Pediatric Epilepsy Learning Healthcare System and the other system that you mentioned in your presentation?

Both systems are quite deliberate and have made a big effort. The ELHS, the Epilepsy Learning Healthcare System, is run out of the Epilepsy Foundation, which at its heart is an advocacy organization. I think the DNA there I think is much more about patients’ perspectives. We were aware of that. We wanted to make sure we were listening and including that voice, which is why we bring everyone on the calls.

As a example, when we put our forms together, we wanted to have a scale like, “How often are you having seizures?” In the original scale, the most you could say was multiple per day. A couple of parents were like, “My kid has more than that.”

“What do you mean?” we asked. “Multiple per day, that’s it.” Parents said, “Yeah. I can’t even count because there’s so many.”

We said, “Oh, okay. We missed something important.” Now the highest level is “too many to count.”

Is there the possibility for an international collaboration? Could it be even better with hundreds or thousands in the wider group?

I love that. Whoever wrote that question, we are like mind melded. We’ve had some conversations about collaborating internationally. Building the questionnaire into the healthcare records vendors’ system, then all of their customers internationally can then use the form. Then, if you get a collaborator, then the data’s already there. The collaborator just has to send it.

How do I encourage my neurologist to participate in The Pediatric Epilepsy Learning Healthcare System?

Tell them to email me. We have some funding and we were provided 20 participating centers some seed funding. That money has run out, but some sites are willing to join with internal resources. At present, if there are sites that are enthusiastic, they can just find me and I can have a conversation with them.

The other thing is that 54 of the US Pediatric Epilepsy Centers are part of PERC, and I am pitching and giving updates on this through all of our PERC calls. We just had our annual meetings last week and we have calls every other month. Find out if your center is part of PERC, find out who the PERC representative is, and then having that person reach out to me.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Female psychologist working with boy who has autism and epilepsy.

Webinar: The Epilepsy-Autism Connection: Research, Diagnosis, and Treatment

It is estimated that over 30% of people with epilepsy also meet the diagnostic criteria for autism.1 In this webinar, presented by Dr. Jamie Capal, hear leading theories on the interconnection between autism and epilepsy. Learn about the most common seizure types in people with autism and dive into the current research on why so many children with autism develop epilepsy.

Dr. Jamie Capal is Associate Professor of Pediatrics and Neurology at Cincinnati Children’s Hospital Medical Center. Dr. Capal has been an integral member of the multidisciplinary Tuberous Sclerosis Clinic Center of Excellence and maintains a busy clinical practice diagnosing and treating children with autism spectrum disorders and comorbid neurological disorders. Her current research is focused in the areas of autism spectrum disorder and Tuberous Sclerosis Complex.


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1 Spence, S., Schneider, M. The Role of Epilepsy and Epileptiform EEGs in Autism Spectrum Disorders. Pediatr Res 65, 599–606 (2009). https://doi.org/10.1203/PDR.0b013e31819e7168.

Audience Q&A with Dr. Capal

Dr. Jamie Capal

Your presentation shared a lot of information about tuberous sclerosis complex. Can you speak to the information we’ve gathered there, and how that might translate to other neurodevelopmental disorders? 

That’s a great question. Currently what we’ve learned is that the earlier your brain gets disrupted (by seizures for example), you’re at a much higher risk for overall disorganization of the brain. And so, what we’re trying to figure out is, are there other things that can tell us what else is going on from a structural standpoint, from an EEG standpoint? Because the goal is prevention.

There are studies going on now, the PREVeNT trial for example, looking at early seizure treatment in babies with Tuberous Sclerosis Complex who have not had seizures yet, but do have abnormalities in their EEG. If you treat the abnormalities before the seizures come, will you get better results with development? And maybe better results as far as preventing autism? That study is closing right now, so we are very interested to learn the results, because really that’s the next step.

Many other neurodevelopmental disorders are also looking at similar things, and what we know is looking earlier is better. The earliest we can try to advocate for prevention, the better off we are to disrupt these mechanisms that result in developmental delays and autism.

EEG testing is not standard when screening for autism. What sort of information would need to be gathered in order to make that a more standardized approach?

I think what we really need is a protective studies – basically doing screening EEGs on all kids that are newly diagnosed with autism, and then follow them out longitudinally. But the problem is that this is a very expensive and long study, but I really think it’s something that needs to be done. That way, we have a true idea of what the percentage of kids with autism have abnormal EEGs, and what their risk of eventually developing epilepsy is. That will give us the evidence we need to say, “Everybody with autism needs to get an EEG as screening.” Right now we just don’t have anything.

In focal epilepsy, if seizures are emanating from a specific area of a brain, is a person more likely to develop autism?

A lot of people have looked at this. There is some evidence showing that maybe epilepsy in the frontal region of the brain, or the temporal region of the brain may predispose you to having autism, but it’s not universal. There’s some evidence showing that.

Has any research looked at if children with autism can improve cognitively with increase seizure control? 

The study I referred to in my presentation that is looking at the natural history of the development of autism is working to understand this. We collect all the seizure diaries form patients in this study, and we are going to see if anyone’s scores improve with treatment. There’s also a group looking at whether or not improving seizure control with epilepsy surgery increases cognitive development. Again, the goal though is to look at this early in life. That is where the field is going right now. Nothing has come out of it yet, but that’s we’re looking.

We know epilepsy can impact cognitive function, and then cause cognitive decline in a way that might make an adult look like they have some aspects of autism. Is this due to the seizure activity? Is there a way to protect the brain from that seizure activity?

That’s a difficult question to answer. Think about the epileptic encephalopathies, for example. Those are the patients who are having lots and lots of seizures, and even when they’re not having seizures, they’re background brain activity is abnormal. Their neuronal connections are not allowed to form correctly, so those patients are going to develop cognitive impairment. In those cases, by controlling the seizures, you would expect cognition to improve.

In other cases though, it’s less clear. I think you have to think about epilepsy as not causing necessarily causing the delays. There may be two things happening simultaneously, and epilepsy is just making it worse. So treating epilepsy may help, but it’s not going to reverse cognitive impairment.

Are there links between epilepsy, autism, and Alzheimer’s?

I can’t say that I know a lot about the literature for Alzheimer’s, but I can say there is a lot of interest in looking at the connection between Alzheimer’s and autism. I think there are a lot of shared genetic mechanisms between these conditions. That connection is definitely something I think needs to continue to be looked at as we do more genetic studies. We need to look at; what are the shared genetic links between individuals with Alzheimer’s and autism? That being said, research has found that there are many similarities in the connectivity of the brain in both of those disorders.

Many people with epilepsy, including those with autism, are not responsive to medications, and antiepileptic drugs can cause side effects, like mood changes, GI issues, anxiety, increased repetitive behaviors that worsen…. What are your thoughts about the VNS, and more specifically the noninvasive VNS that is not approved in the US as yet? Does it help with autistic behaviors at all?

I like VNS. I think there are some folks it works very well with. I had one patient, for example, who I was thinking about doing a VNS on, but because he is so active and his behaviors were so erratic, he wasn’t deemed a good candidate for it. Another patient I’m thinking of really did well with VNS,  because they were having so many negative side effects from antiseizure medications.

Should all children diagnosed with epilepsy, especially learning disabilities, be screened for autism?

Ideally, yes. The American Academy of Pediatrics has set up a guideline to screen young patients for autism with the M-CHAT, which is a questionnaire that parents get at 18 months, 24 months, and then again between ages two and three.

One problems is that when young individuals are diagnosed with epilepsy, other aspects of their development aren’t really paid attention to as much. So, clinicians are finding that individuals who are being diagnosed with autism much later, because maybe the doctors were spending more time really focused on the seizures. Those folks really should have good surveillance by their pediatrician. If there are any concerns for development, they should be referred on to developmental pediatrician for further work up.

So, this is really a place where parents could be advocating for that.

Very much so.

What evaluations are being done outside the brain and EEG? Are people looking at the gut, the autonomic nervous system, or sleep disruption that are implicated in both epilepsy and autism?

Yes. There are definitely folks looking at the gut-brain connection. I think there’s a lot of interest there. It’s almost like these subtypes of autism. Abnormal EEG is one subtype, then there are patients with GI disturbances in another group. Sleep can be disrupted for many reasons and you see this problem in various subtypes of autism. There’s an autoimmune interest in individuals that potentially have an autoimmune component to their autism, which I again think is another subtype worth studying. So, I think the more we learn about the underlying causes, the better able to study the clinical features we are.

We historically have been looking at autism as a set of symptoms. But if we study autism as the symptoms only, even though there could be hundreds of causes behind it, we’re not really going to learn anything.

There was a question about what type of preventative treatments would be given to a person with autism and abnormal EEGs, but it sounds like we really need to understand the biology.

Correct. We don’t know. There have been some small studies that have put kids with abnormal EEGs on depakote, for example, and really haven’t found a lot of benefit. The interest is: do we put these patients on medicine to prevent epilepsy? Do we put them on medicine to improve their EEG? We don’t know.

If we look at benign rolandic epilepsy, for example, those individuals may have a few seizures, but they have a lot of underlying EEG abnormalities when they’re sleeping. Some groups found if you treat the EEG abnormalities, cognition may improve. So, the same thought present here, but nobody has ever done a big enough study to tell us that treating EEG abnormalities is worth it. This area definitely needs to be studied.

It could be very difficult to get a non-sedated EEG on children with autism due to sensory and other issues, especially an overnight. Are there other ways to perform EEGs with a headband or other nontraditional approach? 

Some researchers are using the EEG cap. One group is actually desensitize the children in their study by having them wear a hat, so they can get used to the feeling. Those EEGs are pretty accurate versus the traditional leads.

Now, a lot of times we don’t do that clinically. I’m sure there are a lot of reasons financially and training-wise. But I know in research, to get all of these children to have EEGs, the scientists become really creative at desensitizing the kids. For all of our studies we do EEGs on all of our kids, and the tests are actually pretty successful.

What’s involved with genetic testing, and where can we direct people for more information?

Genetic testing can be done several ways. Typically and historically, it’s been a blood test. Your neurologist or developmental pediatrician can order it. What we tend to do is a “chromosomal microarray,” which looks at any deletions or duplication in genes. This test is a good place to start. There are many companies which have developed genetic panels that can be done by blood or saliva. Each panel is different and geared toward a certain set of genes – there’s a autism and developmental disability panel, there’s an epilepsy panel…. So, those are targeted tests.

Then you have the bigger whole exome sequencing. Currently, the Simons Foundation has a big study going on throughout the country called the SPARK study. The study team is collecting saliva from the patient and both parents to look at their exomes and really understand the genetic underpinnings of autism. You can even go to the Simons Foundation’s SPARK study, and can get a kit sent to your house. That’s a great, free way for families to get genetic information, since often genetic tests are not covered by insurance.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: The ABCs of EEGs: An Evolving Tool for Epilepsy Diagnosis

This webinar explores the intricacies and advancements in a well-known diagnostic tool; an EEG.

An electroencephalogram – better known as an EEG – is a test that records electrical brain patterns from the scalp. EEGs are critical for the diagnosis of epilepsy and other neurological conditions. While this diagnostic tool has been available for nearly a century, there have been great advances in the portability and signal detection properties.

This webinar discusses how epilepsy patients have benefited from advances in EEG technology, and the role of the EEG and other neuroimaging tools in the future of epilepsy diagnosis and seizure localization.

This webinar is presented by Dr. David Burdette, Epilepsy Section Chief for Spectrum Health Medical Group in Grand Rapids, Michigan. He has been at the forefront of EEG education having served on the American Board of EEG Technologists (ABRET) and the LAB-EEG board of the American Board of EEG Technologists (ABRET).  Dr. Burdette’s clinical interests include neurotelemetry, long-term EEG trending, treatment of refractory epilepsy, treatment of status epilepticus, and electroencephalography.


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Dr. David BurdetteAudience Q&A with Dr. Burdette

How often should a patient get an EEG if a past EEG was abnormal? At what point do you elect to have a 24 hour versus a 60 minute sleep-deprived EEG?

That is an interesting question, for which there’s not necessarily a right answer or a wrong answer. First, a question: why do people get EEGs? If someone has what I would consider a prototypical seizure…. The old expression goes, “If it walks like a duck and quacks like a duck, it’s probably a duck.” And if someone has seizures that walk and quack like seizures, it’s probably seizures. And if they walk and quack like a focal seizure (what we used to call a partial seizure), then I’m going to treat it as a partial seizure. I may not even need an EEG to do that.

I’ll get an EEG, just a one off type EEG, to make sure I’m not just totally out to lunch. But that EEG may end up being normal, even though that person is probably still have seizures. So, if a patient responds to the first medication I prescribe, as arguably 47% of people do, then that’s great. There is no compelling reason in my mind to repeat that EEG. If that person doesn’t respond to the first medication, I’ll usually have a plan B, so we’ll try the plan B. If that doesn’t work, I need more information.

I need to get some insight into how a person who hasn’t responded to the second medication is doing, so I may get a sleep deprived EEG or a two hour long EEG, so that way I can see those brain waves when they’re awake, drowsy, and asleep. Often times we need that sleep in order to really see the rhythmicity of the brain and for me to figure out, “Ah I was wrong. It was walking and quacking like a partial seizure, but in fact it was a generalized seizure and I chose the wrong medication.” Ideally that doesn’t happen, but it could. So, in that instance, I would get a sleep deprived EEG or I might get an ambulatory EEG so that over 24-48 hours, I can see that waking, drowsy sleep rhythmicity and see what’s going on.

If the individual still has seizures or the EEGs are unhelpful, then I will have the person come into the epilepsy monitoring unit. The place in the hospital where the healthiest people are, and we bring them in, it’s the one time in your life we want you to have a seizure, so we crash the person off their medications, sleep deprive them every other night, and ideally record a seizure.

That being said, in children there are many genetic forms of epilepsy which may appear in childhood and be outgrown later in life. In this case, serial EEGs are necessary to identify that progression.

Regarding the rhythms you showed at the end of the presentation, are those patterns in patients with epilepsy only or do healthy patients have similar multi-day rhythms?

There will be an element of speculation to my answer because we don’t know. But I don’t think it’s too much of a leap of faith to say that multi-day variation, the diurnal variation we tend to see in seizures,  is being driven by a rhythm that is intrinsic to the brain itself. So in essence, the likelihood is that, seizures or no seizures, epilepsy or no epilepsy, we all have those rhythms. How they manifest though is difficult to say unless you have seizures.

Can you explain the subclinical seizures and EEG signatures called PLEDs, burst, and birds? This is a very detailed question about these different signatures.

Seizures are typically divided into “generalized seizures,” in which one second the brain is fine and then the next second both hemispheres are seizing, and “focal seizures,” in which seizures begin in a specific area of the brain. You’ve probably heard this notion that we only use ten percent of our brain. If we could use 90% we could do telekinesis, we could do whatever. Who knows, maybe people could develop telekinesis, I wouldn’t know. But I do know that we use our entire brains. A PET scan will light up the glucose metabolism the brain cells that are working, and we know that the whole brain lights up.

We’re using all of our brain, but we can only define what 10% of the brain does. When I do brain mapping on someone in anticipation of epilepsy surgery, in 90% of the parts of the brain I map, I can’t identify anything that happens when I stimulate it. Further, the person with epilepsy cannot identify that I’ve done anything. So, 10% of the brain is what we call “eloquent.”

If you have a seizure in eloquent cortex, it’s going to cause a symptom. If you have a seizure in a part of the brain that activates if you heard an oncoming train, then your seizure will cause an auditory hallucination of an oncoming train. But for other 90% of the brain, if the seizure starts there and stays focally there, then there’s a reasonable chance you’re going to have no symptoms. We would call that a “subclinical seizure.” In this case, we can see it on the EEG, particularly if we’re recording from directly within the brain itself. A seizure is happening, but it is subclinical – it’s causing no symptoms.

With PLEDs or LPEDs – we change the name sometimes but it’s the same phenomenon – this is a sign of an excited brain. If either some badness happens to the brain, a stroke for instance, then the area around the stroke will have excessive excitability. Or, if someone has known epilepsy and they go into status epilepticus – one seizure after another after another – the excitability of the brain really goes up in that area. The end result of this happening is that the brain keeps pushing toward a seizure, causing a burst of activity that shuts down that part of the brain for a second as it recovers, and then it happens again, boom, and then it shuts it down, and then boom…. Seizures during status epilepticus are periodic, like a metronome: fires, fires, fires, fires, it’s lateralized, it’s over one half of the brain, epileptic form discharges. So these are boom, boom, boom. This state is highly epileptogenic, but it is transient. So once you correct whatever is the underlying issue, it should resolve.

Bursts are a more descriptive term. In that case the brain is going about its business, then there’s a burst of activity, kind of like we saw earlier in my presentation where it’s burst, suppression, burst, suppression. So that is a descriptive term applied to any sudden outpouring of electrical activity within the brain. We will see bursts in a broad array of clinical situations from burst suppression to various epileptic or epilepsy related phenomena, and they are in essence this large outpouring of synchronous brain activity.

And then the final term, birds, has been applied in a few ways, but these are these brief, rhythmic discharges that are not quite seizures, but show a strong tendency towards seizures. This is a term most commonly used in neonatal EEGs. In adults, I see the brain waves going along, I see a burst of activity, looks like a spike, we call it a spike.

In the neonatal brain, development is happening really fast. Newborns get these spikes all the time and they can be normal. To differentiate abnormal bursts of activity, we use various terms to describe he specific kinds of spikes. If you see those spikes but they’re rhythmic and they last a certain period of time, then that is more worrisome for seizures. So that is most commonly how birds are used.

How sensitive are ambulatory EEGs? Is there a difference in the ability to pick up seizures between ambulatory versus in patient monitoring?

Ambulatory is more sensitive than a routine EEG. A routine EEG lasts 20 to 30 minutes. What are the odds that we’re going to pick up some abnormality in 20 to 30 minutes? It depends how active someone’s seizures are. If they’re having a seizure every five minutes, we’ll probably pick it up in a 30 minute EEG. Most people, however, are not having seizures as often as that. Most people have more widely dispersed seizures and therefore, by extension, more widely dispersed abnormal bursts of activity associated with seizures.

The longer we can record an EEG, the greater our likelihood of coming up with an answer to better inform our treatment options. A 20 to 30 minute EEG gives us some information. A 24 hour EEG gives us much more information, because we see those brainwaves in wakefulness, drowsiness, stages one, two, three, four, and REM sleep. The next step is being admitted to the epilepsy monitoring unit. If you go into an epilepsy monitoring unit and there are no medication changes made, you might as well have it done at home, because you’re less restricted at home.

But typically what we do in the epilepsy monitoring unit is evaluate situations when the ambulatory EEG didn’t give us the answers we needed. The in-patient epilepsy monitoring unit EEG allows us to take you off of medications, not necessarily to induce a seizure, but to remove your protection from seizures, so that we can record an actual seizure. That would be dangerous to do in many situations at home because there are risks of having multiple seizures. You could go into status epilepticus, you could (god forbid) have Sudden Unexpected Death from Epilepsy – it’s a scary situation. But in the hospital, it’s a monitored situation. An EEG tech is watching the screen 24-7 and when a seizure happens, they push a button, nurses come running, and they give medications to abort the seizure.

That’s the main difference – for an ambulatory EEG you’re probably on medication, and in the epilepsy monitoring unit we’re taking away the medication.

How do I know if my doctor knows the latest information about performing an EEG? Are there any questions I can ask?

I would ask if they have done an EEG or epilepsy fellowship. When someone goes into training in neurology, they do their internship right out of medical school. During that time, they get some basic training and learn more about treating patients with various maladies. Then they do a neurology residency, and focus on just brain-, spinal cord-, nerve-, and muscle-related issues. Part of that training is learning some basics of EEG, and learning the basics of taking care of a broad range of issues from Parkinson’s disease to tremors, to peripheral neuropathy to epilepsy.

Typically after someone develops seizures they will start with seeing a neurologist. And frankly, the majority of people do very well with seeing a neurologist. If, however, a person continues to have seizures, then it is time to move it up a notch. And that next notch takes the form of neurologists who did extra training for one or two years in either clinical neurophysiology, EEG, or in epilepsy (which also includes an EEG component). That by itself means that person is going to have a greater level of comfort and more in-depth knowledge of seizures and epilepsy.

In addition, you can check if your provider is board certified. Board certification will establish that a person has a minimal amount of knowledge. It doesn’t say that they’re the greatest thing since skim milk, but it assures to some degree a minimum level of competence. I tend to check if my doctor is board certified in the area in which I am seeking their opinion. That being said, some of the best epileptologists I know have never taken a board exam. Because you don’t have to take a board exam to practice in epilepsy.

If your seizures are well controlled, and by well controlled I mean you are seizure free, then your general neurologist is more than adequately capable of taking care of you. If you are still having seizures – once a month, a week, a day, a year – and adjustments are not effective, then it is time to seek the opinion of a specialist, who has done that extra training.

If that doesn’t work out, you kick it up a notch and you see someone who is in an NAEC level four epilepsy center. So that’s the National Association of Epilepsy Centers. They have a certification process whereby they evaluate who the epileptologists are, the neuropsychologists, the nurse practitioners, the entire epilepsy team, and determine if they have all of the credentials that indicate them to be highly competent in their field. If they do, those individuals will get a level three or level four (the highest level) designation. And if you’re having ongoing seizures and have tried multiple approaches, then ultimately you want to end up at an NAEC level four center.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Rescue Medication Delivery Methods and Future Therapies

Seizures can be both unpredictable and unrelenting. When a seizure becomes an emergency, rescue medications provide immediate relief and help prevent the need for emergency care. While existing therapies do stop these epilepsy emergencies in many patients, some are still searching for an option that works for them.

In the second part of this two-part webinar series, gain insight from Dr. Nathan Fountain of the University of Virginia on how different rescue medications can be administered, promising research, and what rescue therapies are currently in the pipeline. His presentation includes a look at the rescue medication pipeline and the new delivery methods which may become available to patients.

Dr. Nathan Fountain, Professor of Neurology and the Director of the Comprehensive Epilepsy Program at the University of Virginia.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

A doctor goes over medical information with his patient.

Webinar: Epilepsy Emergencies and Current Rescue Medications

Seizures can be both unpredictable and unrelenting. When a seizure becomes an emergency, rescue medications provide immediate relief and help prevent the need for emergency care. While existing therapies do stop these epilepsy emergencies in many patients, some are still searching for an option that works for them.

In this webinar, Dr. Kamil Detyniecki of the University of Miami provides an overview of the different types of seizure emergencies, while also discussing the currently available rescue medications.

View our follow-up webinar on the latest advances in rescue medications.


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The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Epilepsy Surgery: Advancements, Options, & Considerations

For some people with uncontrolled seizures, epilepsy surgery is an effective and important option to consider. This webinar will help patients and caregivers approach this difficult and sometimes confusing conversation with their doctors.

Webinar presenter Dr. Kate Davis explores recent advances in epilepsy surgery, which have increased not only the types of surgeries available to patients but expanded who is an appropriate candidate for surgery. Dr. Davis also discusses the different tests performed as part of an epilepsy surgical evaluation and review current surgical options including resective surgery, laser ablation, and implantable devices.

Dr. Kate Davis is Medical Director of the Epilepsy Surgical Program and Epilepsy Monitoring Unit at the University of Pennsylvania.


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Plus, get the patient perspective on epilepsy surgery from this episode of our Seizing Life podcast.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

A cute little girl in a yellow shirt holding a tomato in front of a bowl of salad.

Epilepsy and Dietary Therapies: How What You Eat May Help Control Seizures

For individuals with epilepsy – particularly refractory epilepsy – change of diet can be a recommended therapy for seizure control. While the ketogenic diet has been around for almost a century and is the arguably the most well-known dietary treatment option, today, there are multiple diets used to treat specific epilepsy types and syndromes.

In this webinar, two neurologists present both the research and clinical perspectives of dietary therapies. Dr. Jong Rho speaks to the science backing the use of dietary therapies to control seizures, and Dr. Eric Kosoff discusses how doctors determine which patients to recommend these therapies for, as well as how patients can work with their doctors to navigate these options.

Dr. Jong Rho is Professor of Pediatrics, Clinical Neurosciences, and Physiology and Pharmacology at the University of Calgary and Dr. Eric Kossoff is Professor of Neurology and Pediatrics at Johns Hopkins Children’s Center.

Plus, listen to our Seizing Life podcast episode featuring registered dietician Robyn Blackford and advanced practice nurse Breanne Fisher for more information about using the ketogenic diet to treat epilepsy.


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Post-Traumatic Epilepsy (PTE)

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Dr. Ramon Diaz-Arrastia, Professor of Neurology, University of Pennsylvania
CURE presents a leading expert on Post-Traumatic Epilepsy

In CURE’s Leaders in Epilepsy Research webinar, participants hear from a leading expert on Post-Traumatic Epilepsy (PTE), epilepsy resulting in physical trauma to the brain. The webinar reviews efforts underway to advance our understanding of PTE, as well as the exciting new therapies being developed that may one day result in a cure.

It is presented by Ramon Diaz-Arrastia, MD, PhD, of the University of Pennsylvania. Dr. Diaz-Arrastia is an expert on the molecular, cellular, and tissue level mechanisms of trauma-induced neuroregeneration and injury-related synaptic plasticity. He works to develop effective therapies for Post-Traumatic Epilepsy.

Plus, hear more about the history and current state of PTE research from this episode of our Seizing Life podcast.

Webinar: Sudden Unexpected Death in Epilepsy (SUDEP)

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A webinar discussing the population at risk for Sudden Unexpected Death in Epilepsy (SUDEP) and what risk factors may be involved. Dr. Elizabeth Donner explores the personal impact of SUDEP, the latest research statistics, and what resources are available to the community. Part of the CURE Leaders in Epilepsy webinar series.

A doctor examines brain scans while a girl sits on her father's lap in the background.

Transitioning from Pediatric to Adult Epilepsy Care

Transitioning from pediatric to adult care is a major milestone for individuals with epilepsy and their families. Unfortunately, this process can be delayed due to the multitude of health and comorbid conditions which can accompany epilepsy, as well as the personal bond between the family and their pediatric care team.

This webinar discusses how epilepsy patients, their families, and pediatric neurologists can develop a plan to prepare for the transition of care. The presenter, Dr. Joseph Sirven, explores what factors to consider when transitioning care, established research guidelines for transitioning care, and the resources available to assist everyone involved.

This webinar is conducted by Dr. Joseph Sirven, Professor of Neurology and Chair Emeritus in the Department of Neurology and Director of the Epilepsy Program at the Mayo Clinic’s Arizona Campus. Dr. Sirven serves as editor-in-chief at www.epilepsy.com.

 


The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.


The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.