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Dr. Scott Perry, Medical Director of Neurosciences and Dr. Christos Papadelis, Director of Neurosciences Research along with Dianna Grado, Clinical Coordinator for Neurosciences Research, explore how breaking research boundaries creates limitless possibilities, paving the way for world-class research – and results once thought impossible for kids and young adults with neurological disorders.
Dr. Christos Papadelis
Dianna Grado, RN
Jane and John Justin Neurociences Research Center
Adult Genetic Epilepsy Clinic
Comprehensive Epilepsy Program
Movement Disorders Clinic
Cerebral Palsy Clinic
Cook Children’s Neurology
Cook Children’s Neurosciences Research Center
Dodson Neuro Research Endowment
Primary steps for primary care: Sleep disorders in epilepsy and cerebral palsy
Infantile Spasms- Primary Steps for Primary Care
Staring Spells – Primary Steps for Primary Care
Febrile Seizures – Primary Steps for Primary Care
The Arcuate – Neuroscience Research
Early Identification and Improving Life-Long Outcomes in Cerebral Palsy Patients
New-Onset Seizure Clinic Seeks to Decrease Wait Time for Initial Evaluation
BE FAST to Recognize the Signs of Pediatric Stroke
Pioneering Surgery Disconnects Left Side of Brain to Stop Child’s Daily Seizures
Teen Becomes First in North Texas to Undergo Landmark Brain Surgery for Epilepsy
Host: Hello and welcome to this edition of Doc Talk. We're honored and excited today to be speaking with key researchers at Cook Children's Jane and John Justin Neurosciences Center. We're joined by Dr. Scott Perry, Medical Director of Neurosciences, Dr. Christos Papadelis, Director of Neurosciences Research and Diana Grotto, Clinical Coordinator for Neurosciences Research. Made up of some of the brightest minds in the world, individually and together, this research team has won numerous awards and accolades for their many achievements in neurosciences research. As a result of their work. They've had a major impact on improved outcomes for children and young adults with neurological conditions, not only here in Texas, but nationally and internationally as well. Welcome.
Dr. Perry: Thanks for having us, Jan.
Host: I know you all are very busy. So let's just dive right in. You've done a lot of great research here at Cook Children's. Over the last two years Cook Children's Jane and John Justin Neurosciences Center has significantly expanded the Neurosciences Research Center, which includes extensive research into the causes comorbidities and treatments for children and adults with disorders of the nervous system. What was the motivation behind that? Dr. Perry,
Dr. Perry: Jan, you know, Cook has had a long history of clinical excellence, right. And we've been doing research for a long time, but a lot of people honestly don't know that. We wanted to take research a step further. So we'd always embedded it within our clinical practice on a daily scale. But in order to provide the best care for the patients we take care of, you have to take the next step of "innovate," and bring new treatments and therapies and things of that nature. Given that our practice has always been primarily a clinical practice with, you know, physicians seeing patients every single day, research is kind of hard to squeeze into that. So we said you know, how can we put together a neuroscience team that is dedicated to doing research every single day? And that's really where the idea for the Dodson Neuroscience Research Endowment came from. A generous gift from Pitt Dodson provided us an endowment so that we would have essentially grant money available to hire a full research team, which is where Dr. Papadelis came from, as a neuroscience researcher, to join us and create this team who is embedded into our clinical practice every day, is always there with the docs in clinic, and tries to help us develop research that has near-term benefits to our patients. Like we want to do research that is applicable to the care of the kids we're seeing right now, as well as the kids we might see later on in the future. So you know, we're focused primarily right now on epilepsy and movement disorders. Those are the two biggest areas that we built teams around. And the future holds several other sections of neurosciences that I think we'll talk about as we go through the rest of our conversation today. And then we focused on two types of research, which we'll talk about throughout this conversation today, the first being more kind of industry sponsored research. So things where we're working with industries like the pharmaceutical industry, etc., to develop treatments for patients, and we focus specifically on a lot of rare diseases, but then also investigator initiated research. So those are, those are things that are born and bred at Cook Children's. Ideas that we have, that we want to develop to help, uh, help our patients and to innovate in their care.
Host: So Dr. Papadelis, let's talk about your team. You have pulled together some of the brightest minds in the research field to collaborate. Can you talk about the qualities of the people you have brought together and the expertise they bring to the department?
Dr. Papadelis: Thanks, Jan. Indeed, we think these two last years, we managed to attract productive scientists from all over the world, formulating a research team of 16 people in total. We had Crystal Cooper, a former assistant professor from UT Southwestern, who joined my team last year, bringing expertise on a new imaging technique called functional magnetic resonance imaging, or functional MRI, for studying the comorbidities of epilepsy, such as depression anxiety. Dr. Georgios Alexandraikis, associate professor at the University of Texas at Arlington also joined our research center, serving as our liaison with UTA and bringing tremendous expertise on optical and neuromodulation techniques. We also hired Dr. Yanlong Song, a former postdoctoral fellow from University of Virginia, who joined the team offering expertise on kinesiology and the study of movement disorders such as cerebral palsy and dystonia. Both of them Dr. Cooper and Dr. Song received research grants within the last two years to support their studies from the Jordan Elizabeth Hollis Foundation, and the American Academy Cerebral Palsy and Developmental Medicine. The group has also several PhD students from Europe and Asia, who joined the team to work on epilepsy projects and managed to excel actually within a short period of time. Two of them are Ludovica Corona and Margherita Matarrese, they actually won the Young Investigator Award from the American Epilepsy Society last week, a prestigious award that indicates the quality of our research. Their studies actually were selected among the best from over 1,300 applications submitted in the annual conference of the society.
Host: So your team has been a leader at using advanced neuroimaging techniques in the evaluation of conditions such as epilepsy, movement disorders and cerebral palsy. As, as Dr. Perry just mentioned, can you tell us a little about your current projects?
Dr. Papadelis: Yes, of course, like, our team has established a unique set of advanced neuroimaging techniques, which help us better understand the anatomy and the function of both for healthy and sick brain. My main focus is pediatric epilepsy the most common neurological disorder in children. And with my research, I tried to help children with epilepsy, who are unable to control their seizures with anti-seizure drugs and suffer from what's called drug resistant epilepsy. So approximately one out of three children with epilepsy suffer from this condition. And for these children are the best available treatment is brain surgery. The challenging part of this kind of surgery is that, in many cases, we don't know exactly where are the seizures. They start in the brain, so this means that we don't know which brain area we should resect during surgery in order the child to become seizure free. By using a unique combination of data from new imaging techniques such as magnetoencephalography, or MEG, and high-density, electroencephalography, or high-density EEG, my team develops advanced biomarkers which can help in the precise delineation of the area where the seizures they start. So this kind of research can help children with drug-resistant epilepsy to become seizure free. My team also works with children who suffer from movement disorders and more specifically with cerebral palsy. Cerebral palsy is the most common motor disorder and one of the most common neurological disorders in children. Children with cerebral palsy are often unable to walk and, or they have significant motor deficits. And the underlying cause is a kind of a brain injury that took place either during during birth or before birth in utero. So by using a combination of neuroimaging techniques, my team tries to understand what we call brain plasticity. How the human brain in children with cerebral palsy has been adapted to this injury in order to become more functional and effective. Our system also recently purchased a rehabilitation robotic device for treating children with cerebral palsy and trying to map functional and structural changes in their brain due to rehabilitation.
Host: So correct me if I'm wrong, but I understand that not only do you have investigators on site, but you're also working with researchers all over the world on projects related to epilepsy and movement disorders. What is the impact of that for patients through this research?
Dr. Papadelis: Um, my thing is indeed, active collaboration with top tier academic institutions around the globe, will have an active collaboration with Boston Children's Hospital, and Massachusetts General Hospital, both affiliated with Harvard Medical School, my previous institution, and the New York University, as well as academic and health institutions in Canada and Europe, such as the Hospital for Sick Children affiliated with the University of Toronto, and the University of Campus Bio-Medico of Rome in Italy. Our collaboration my team believes that our research will benefit children with neurological disorders, such as epilepsy and cerebral palsy by providing access to unique data that can help their epilepsy surgery or access to unique rehabilitation techniques, such as the robotic therapy for improving the motor deficits of the upper and lower extremities.
Host: Now, Dr. Papadelis and his team are not the only members of Cook Children's Neurosciences involved in investigator initiated research. Dr. Perry, I understand we were the first pediatric epilepsy center in Texas, invited to join the Pediatric Epilepsy Research Consortium, also known as PERC. What is that organization and why does that matter?
Dr. Perry: Now Jan, the Pediatric Epilepsy Research Consortium was was founded several years ago to create an environment for collegial research between institutions. And the reason that's important, especially in the neurology world and epilepsy in particular, which this organization focuses on, is that many of these conditions are quite rare. And so for any center to gain a lot of expertise in one disease process may be difficult and may take years and years to do it. By taking a team that is willing to work together, and I think that's something that we don't see enough of in the world, frankly, and certainly the United States, is institutions willing to share data together and work together to solve problems. And that's what PERC is all about. I'm honored to be a member of their leadership steering committee. As part of that organization I founded a few years ago, something called the Epilepsy Surgery Database Project, that is a project that currently includes 24 pediatric U.S. epilepsy centers, collecting a number of data points on all children referred for epilepsy surgery. And that's just that's just one example of the power of what we can do. You know, why is that important? Epilepsy surgery may only occur a few times, and some centers may occur, you know, 70 or more times, and other centers, and their experience, their expertise and their processes of how they do it, how they select the patients that have surgery, the outcomes of those patients may be very different depending on where you are in the country. And by putting that all together, we hope to be able to compare the effectiveness of the ways we we evaluate children, and when we do pediatric epilepsy surgery so that we improve the outcomes, we standardize the way it's done across the country. And here in only two years’ worth of existence, we've already enrolled well over 1200 children into that database, which would have taken any one institution, you know, a decade or more to have to gather that. And so a lot of exciting things come out of organizations like that. And then each can then take that data and can ask their own questions. And then, you know, as a team, across the country, we're trying to solve these problems. So it's very important to be a member of things like that.
Host: So the research team at Cook Children's was instrumental in initiating cannabidiol and fenfluramine research to help treat pediatric patients with rare genetic epilepsies. Now, these are considered approved treatments. Dr. Perry, can we dive a little more into clinical trials we are doing now, as well as the process for participating in one of these trials?
Dr. Perry:Yeah, absolutely. You know, while investigator initiated research is super important, we can't, we can't underestimate the importance of industry sponsored research, and the development of new drugs. And for us, a lot of the focus, as I said earlier, is on rare rare disease or rare genetic epilepsy in particular, because that's, that's an area of my interest, Dravet syndrome and other channelopathies such as such as that. And oftentimes, these these trials, these are conditions that don't have approved therapies, you know, so people are doing whatever is the consensus best approach to treat them. But fortunately, there's been a lot more interest now in developing therapies for them. And by doing these projects, you open that door to those therapies as this may be the only way to get it until it's FDA approved. So being able to offer that is really important, you know, in the past I had always shied away from industry sponsored research, because most of the trials were drugs that had already been tested and approved in adults, they were available at the pharmacy to be used off label. And you know, doing the trial just really didn't help as much, but now we have trials that are specifically designed for children with very rare conditions. And offering those therapies to them is just instrumental to, you know, great outcomes, which you can see what the outcomes of both those trials, you mentioned. The cannabidiol and the fenfluramine had really meaningful impact on people with Dravet syndrome and Lennox Gastaut syndrome. We've got a lot of exciting stuff coming up. We are, you know, we try our best to offer as many, many studies for rare disorders as as we can. We have some upcoming studies for SCN8A encephalopathy, will be the first drug trial for this condition. We have multiple ongoing trials for Dravet syndrome, some of the disease modifying therapies using antisense oligonucleotide therapy and viral vector therapy, which are really exciting treatments that are aimed at the genetic reason for this condition. So not just treating the symptom of seizures, but trying to correct the genetic abnormality. So that that's exciting. A couple other drug compounds we're looking at for Dravet syndrome and some other rare epilepsies. So I yeah, I think it's an important thing. We try to stay engaged and try to offer as many as we can, so that our patients have, you know, lots of options out there.
Host: Terrific. So since the beginning of COVID-19, we've learned that not everyone is aware of the phases of drug development and the method of getting treatments through FDA approval to make them available to patients. For families or physicians listening, that may not be as familiar with the phases, can you walk us through the process? Where did these ideas come from? And how does one go from discovery to availability?
Dr. Pilgrim: What a great question. You know, most of these, most of these compounds begin as, you know, drugs and basic science labs that you know, show and, you know, basic science experiments that they may work towards epilepsy or maybe they work for that specific genetic condition that we're talking about. And once there's some kind of signal there that you might have something that is useful, that could benefit, then it's going to go through multiple stages of clinical trials. The first stage, or what we call phase one, is one that is really just taking the compound and mostly using it in healthy volunteers just to get a feel for its its safety, toxicity, doses, you know, is it is it okay to use in a human basically, now that it's moved from an animal model. A phase two trial. So phase two, and three, and four are things that most people are going to encounter more often. A phase two trial is one in which a group that has the disorder under interest is being studied. But the purpose of the study is really to understand the safety of the drug. So these are going to be smaller trials, we want to make sure it's a safe drug to use in this particular disease process. But we're not going to have maybe enough people in the trial to really understand how effective is it yet? The phase three trial is the one where you're going to assess not only how safe is it, but how effective is it for the problem at hand. Most of these are frequently double blind, placebo controlled trials. So if we break that down, you know, what does that mean? So double blind means that myself as the investigator, and the the caregiver, or the patient do not know what treatment they're on. It's placebo controlled, which means one, some people are going to be on a placebo, meaning not an active substance, and some people are going to be on the drug under investigation. And the reason that's important is because that removes, by double blinding it and using a placebo group, we remove the bias that people may have right? You can imagine if you know you're in a research trial, and you're know you're getting a drug that is supposed to be effective for a condition, some of your symptoms may be better, and they might not be better because they're actually better, but they might be better because you feel like they ought to be better, because you're in a trial specific, you know, to this condition. And so that really helps eliminate that. So you can get a real feel for what is the medicine doing. Same with side effects, right? Because lots of side effects are common. Nausea, vomiting, dizziness, headache, I mean, occurs all the time. So you have to have placebo controlled double blinded studies to understand is headache really more frequent people getting this new treatment under investigation? Or is it really the same amount that happens to people who aren't under the you know, on that medicine? And then a phase four trial is after the drug is out it's approved, it's that post kind of marketing information. And that's important, too, because phase three trials are highly regulated protocols, we got lots of rules to follow. You were you know, on top of doing everything exactly as it's supposed to do. And in reality, that's not real life. So when you leave the trial, and you go off to live real life, and you've got all kinds of maybe different medicines, you're using different activities, and whatever we need to understand, did what happened in the trial hold up in the real world as well and as is still safe and as efficacious as we saw in the original trial.
Host: Performing clinical trials is a complicated endeavor. And it takes a team of experts in research to do it well. Dr. Perry, you amassed quite the team, making Cook Children's a primary site for many studies, particularly those focused on rare genetic epilepsies. You said many times before, the most important member of the team is the clinical research coordinator, often a nurse that serves as the quarterback for the study, making sure the protocol is followed precisely and working closely with you to ensure the safety of all the patients participating. We're lucky to have Diana Grado join us today. Diana serves as the clinical research coordinator for almost all of Dr. Perry's studies and has extensive experience in clinical trial research. So Diana, how do you determine if someone is eligible for a clinical trial?
Dianna Grado: So Dr. Perry is really great at identifying patients. So whether they come from him or an outside referral, he usually starts with a conversation to determine basic eligibility. Do you have this diagnosis? Do you have enough seizures? And once that is confirmed, then they will all come in and do a screening visit with me. To start the screening visit, we always start with informed consent. Informed consent is super important. It goes over the trial from A to Z, what to expect who we are, how long the trial is, how many patients are going to be on that trial, the known side effects so what to expect it every single visit. And one of the most important things that we let everyone know who does a clinical trial is that it's completely voluntary. So at any point and any time, if you want to stop the trial, then you have that right. Once that's signed, then we start working on eligibility criteria. Every study has inclusion and exclusion criteria, that every patient must meet 100%. And that is to ensure that we have good trial data and that we are keeping everybody safe. And to determine that criteria, patients will typically undergo a bunch of assessments. So whether that be labs, an EKG, an echo, just a whole gamut of things to determine eligibility. And then for epilepsy, one of the main things is epilepsy history. Dr. Perry will do a very thorough review of their current seizures and past seizures and diagnosis. And once that is completed, we send that off to an epilepsy consortium, typically, and they will approve that. And then lastly, because all we do, for the most part is epilepsy studies, we will send patients home with a diary. And so they are to document every seizure they have typically for about 28 days to make sure that they are having enough seizures to qualify. Because to determine if a medicine is working, we need to know that they had enough seizures to start with and that we can see a decrease. And so once all that's done, they go home for 28 days, maybe longer. If they meet all the criteria, then they come back and they start the trial.
Host: So for parents who are patients out there that might be considering participation in clinical trial research, what might you tell them to expect?
Dianna Grado: I would tell them that they will see us often, and that the visits are quite long. Typically, if like I mentioned before you see a whole bunch of disciplines you come in, you will meet with me for every single visit, you'll meet with Dr. Perry for every single visit. But we will send you to lab and we'll send you to EKG and we'll send you to every discipline needed to follow the protocol that the sponsor has, has written. We ask a lot of questions to make sure that you are safe and we're not putting you at risk while you're on this new medication. It's different than Dr. Perry writing you a prescription for a drug that's already FDA approved. We have to make sure that we can document those side effects. And that we're just being really thorough is the big thing. And I think the important thing for patients and parents to know is that it is a huge commitment on their end. Because it is it's it's a lot. But it's very rewarding when you get a new medication that no one else can get. And it works for your child. It's no guarantee. But that's always our hope to offer something that is going to make a change.
Host: So are there age restrictions or age limitations?
Dianna Grado: I think if we have a physician or even a parent who's interested, a good thing to do is go to go to our website, go to Cook Children's dot org, go to the search box, search for research and we will have a list of all available trials, it should be up to date and there should be a link to contact us. You can always call Dr. Perry's office they will get you in touch with me or the main phone number for Cook and ask for the research department or myself. And I think if you don't find what you need on Cook Children's website, go to clinical trials.gov. They have a great search engine. You can type in the diagnosis, they will tell you the you know the what's going on in the study who's doing it and have contact information on there as well.
Host: Cook Children's has been participating in research for decades. And now that we have the Neuroscience Research Center, we are expanding the capabilities of collaborations with more institutions and other researchers worldwide, creating a hub for research. What do you think the future holds for neuroscience research at Cook Children's, Dr. Perry?
Dr. Perry: Well, you know, Jan, we talked a lot today about, you know, our own investigator research. And of course, we spent a lot of time talking about clinical trials and really focused on epilepsy. And that's logical, because that's what Diana and I do every day. I think the first thing to know is that I think the clinical trial research will continue to grow well beyond that. And it's already grown well beyond that. We have, we have faculty that do research in demyelinating disorders like multiple sclerosis, neuromuscular disorders, like muscular dystrophies, etc. And so and to add to what we were saying earlier about, how would you find out about trials when you when you go to the website, and you look up the faculty members in their areas of neuroscience interest, oftentimes it includes information about maybe what trials they are participating in, and they have available, so those are always important places to look. I think the future is super bright, other otherwise from Dr. Papadelis and his team, you know. I mean, look at what has occurred in basically two years’ worth of being here. A group of none became a group of 16 as got in the American epilepsy society meeting coming up, but 25 abstracts from you know, our institution, and our partner institutions, which is a huge jump over, you know, two or three, just a couple years earlier. So if that happened in two years, I think you can expect a lot of growth from that. We do hope to build out into the other regions of the neurosciences. One of the purposes of bringing in Dr. Cooper was her interest in mental health. And so not just looking at the mental health, comorbidities of epilepsy with mental health, comorbidities of other disorders of the nervous system, building into research and autism and developmental pediatrics with our partners of the Child Study Center at Cook Children's. So there are really endless opportunities. Cook, Cook Children's Neuroscience Center, the Justin Neurosciences Center is a large is a large group, right with over 30,000 outpatients seen each year. There's a great number of children getting care for a number of conditions here and we have a lot of opportunities to continue to improve on all of that condition all of those conditions, with with research and that's what we intend to do. So it's it's really exciting. And the Dodson endowment has just been a great foundation to really get that started. And, you know, we plan to just continue to grow that, grow the team, and continue to expand on the great work that's being done.
Host: Really is super, super exciting. So if any of our listeners want more information about neuroscience research at Cook Children's, or clinical trials available, or what other resources are available, where can they go?
Dr. Perry: The website is going to be your best and easiest place to get linked up to lots of things. So that's www dot Cook Children's dot org backslash neurology that'll take you to the main site and if you just look on the left of the page, there's a tab for research, you can click on that you can find out all all about Dr. Papadelis's program. As well as if you look at the individual faculty members, their their research is listed. And those are probably the greatest places to get the up-to-date stuff from from Cook Children's.
Host: I really want to thank you all for joining us today. Appreciate your valuable time and the groundbreaking work that you're doing.
Dr. Papadelis:Thank you
Dr. Perry: It's been a pleasure
Host: And thank you for listening. If you'd like more information about this program or any program at Cook Children's, please visit us at Cook Children's dot org. Like what you heard, you can subscribe to Cook Children's Doc Talk wherever you get your podcasts. You can also subscribe to our Doc Talk newsletter on our Health Professionals website.