Pediatric Epilepsy Research Consortium - M. Scott Perry, Cool Children’s Medical Center, TX, USA
M. Scott Perry explains how Epilepsy Researchers require intros and support to be the best that they can be and initiate, manage, and see results. It’s possible through the Pediatric Epilepsy Research Consortium (PERC)
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 M. Scott Perry
“To not only advance research by, like, the questions we're asking now, but to advance it by preparing the next generation that is going to be carrying this on, you know, after us. So, it's really exciting! I think there's so many opportunities to remove barriers to the work we do thanks to an organisation like this.”Torie Robinson
Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights.
So, we have some amazing, relatively junior paediatric epileptologists and researchers, who, can have brilliant ideas for epilepsy research that could improve the lives of their patients and families. But (and there’s a but!) - if you don’t know the right people, that idea and motivation can fall into the abyss. So, this is where the Pediatric Epilepsy Research Consortium (or PERC) comes in!
Please don’t forget to like, comment and subscribe to our channel. Only about 18% of our regular viewers are actual subscribers, so if you are one of the 82% that hasn’t yet subscribed, please do do so today - because the numbers help us with the algorithms which will then promote our channel to more people who aren’t yet familiar with the epilepsies. And that’s what we are trying to do - to raise awareness and understanding of the epilepsies around the world. Now, onto our star of the week, epileptologist and boss (or president :D ) of the PERC: Scott Perry!
Torie Robinson (00:01.975)
Hello there Scott, Scott Perry. Wonderful to have you back again after quite a while. For those who haven't heard from you before, what do you do?
M. Scott Perry (00:08.333)
So, I am a paediatric epileptologist here in Fort Worth, Texas at Cook Children's Medical Center.
Torie Robinson (00:19.735)
And tell us about your new project, well it's kind of a new project but not a new project, you've got a bit of rebranding going on, tell us about this.
M. Scott Perry (00:29.421)
Yeah, I'm fortunate right now to serve as the president of the Pediatric Epilepsy Research Consortium [(PERC)], which as you said is not a new thing, but has recently become its own independent non-profit and is really starting the path to achieving the mission we thought of a decade ago when this organisation was first formed. So, yeah, about 10 years ago, there's a bunch of epileptologists hanging out at a meeting who were like, you know “There's got to be a better way to do research. Like, I mean, why can't we just all, like, be in a group together, work together, help each other out?”. And that kind of started the Pediatric Epilepsy Research Consortium. And it kind of grew as a volunteer effort over a decade. And we got to a point where we're like, you know, it's time to grow up and move on. Like, we've got to become...
Torie Robinson (00:55.447)
And the mission?
Torie Robinson (01:00.727)
Eh.
M. Scott Perry (01:23.469)
a non-profit and we've got to like to take it to the next level. And so that's where we are. We're there.
Torie Robinson (01:29.559)
And how many of you are part of this consortium?
M. Scott Perry (01:32.941)
So right now, we have 75 U.S. paediatric epilepsy centres. And within those 75 institutions, there's probably 350 to 400 individual members. Those members range from, you know, epileptologists, neuropsychologists, people just involved in the research space, you know, like research coordinators, nurses, we have PhDs. So, lots of people are involved in the organisation.
Torie Robinson (02:07.991)
So, what is the (this is kind of like a basic question I suppose) but what is the mission of your organisation? Why do you even exist?
M. Scott Perry (02:15.917)
Yeah, well, I mean, the mission is, frankly, is, kind of basic. It is to provide the infrastructure for collegial, practice-changing research, which sounds like, well, yeah, duh “Why do you need an organisation for that?”. But, I mean, really, to have a gathering place for all of these epileptologists to come together and know that they've got the ability to connect and work together. Like, no one has to… It takes down that barrier of like you want to do a project and now you got to try to figure out “Well who are the people that are interested in what I'm interested in? And I don't know them so how do I get introduced to them to, like, put it together?”, right? In PERC, you know, we have 13 special interest groups which range from, you know, things like Lennox -Gastaut Syndrome, epilepsy surgery, behavioural health, health equity... I mean, there's a number of different groups and you join those groups because that's an area of interest for you. And then when a project comes up, it's really presented to the organisation as a whole and says “Here's something we're going to do. What institutions, what investigators want to get involved with this?”, and it's, like, “plug and play”! We're, like, building collaborations so quickly that way.
Torie Robinson (03:32.183)
And it sounds like (for their members) that makes things a little bit less stressful, potentially more fun, easier to get things together, and potentially… well that I guess that could make it quicker to get things going, right?
M. Scott Perry (03:37.549)
It does. It absolutely, it absolutely speeds up the process. One of my projects that I did there was the Epilepsy Surgery Database, where we collect data on all patients who are being referred for epilepsy surgery. And in five years, we've got almost 3,500 patients in that database. Like for any one institution to have collected 3,500 patients that underwent epilepsy surgery evaluation would take a long time. We were able to do that. We have 27 sites that participate in that project. I think the other thing that's great about, like, PERC is for the young Investigator, for the new person out of training, right? Because you may be at one institution where maybe you have a faculty of maybe 4 or 5, and there are 4 or 5 great faculty, but as a member of PERC, you can get exposure and mentorship from faculty all over the country. So, it really opens up your opportunity to work with lots of different people who have lots of different approaches to epilepsy and have lots of different ideas.
Torie Robinson (04:48.375)
Because I guess it's all too easy to sort of…. especially in the academia to get kind of stuck in a corner isn't it with just a certain number of people around you that you've kind of grown up with I guess if you're younger as well grown up (you know what I mean!) and so to be exposed to different ideas, different collaborations, you know, just different insight… I even had actually a neurosurgeon in training and contact me the other day he said “Torie are you going to this [(conference)] because I just need some more ideas.”. It's just so important, isn't it? Just different perspectives.
M. Scott Perry (05:22.349)
It is. It's a different perspective. It's different opportunities. You know, I mean like when I'm planning agendas for meetings, right, I'm thinking like who in PERC would be great to speak on this maybe, you know, and who's a young person that is in there that needs that opportunity where they might not have gotten that from, you know, somebody maybe at their own institution. Maybe they wouldn't get it because the opportunity wasn't there. So, it offers a lot of opportunities to not only advance research…
Torie Robinson (05:26.039)
Yes!
M. Scott Perry (05:51.213)
…by like the questions we're asking now, but to advance it by preparing the next generation that is going to be carrying this on, you know, after us. So, it's really exciting! I think there's so many opportunities to remove barriers to the work we do thanks to an organisation like this.
Torie Robinson (06:11.095)
The “removing barriers” thing that you've just said reminds me of sometimes how we talk about things for people with epilepsy. We want to remove the barriers in society, you know, that are holding people back. And so, I guess we're doing it both sides of the coin, which is really important.
M. Scott Perry (06:26.061)
Yeah. I mean, one of the things I think about that I hope we get to a point of, for instance, like I do a lot of genetic epilepsy, right? So, I do a lot of epilepsy trials and we're dealing with very rare diseases. Well, a company wants to develop a therapy like that and they're going to go and they've got to get some research organisation to go find for them where are the sites that can carry out this study? Where is it feasible to have it carried out?
Torie Robinson (06:35.767)
Mm -hmm.
M. Scott Perry (06:54.029)
And so, you know, they send out their feasibility questionnaires. People say “Oh, yes, I've got X number of patients, I think, whatever, you know, maybe you should do it here.”. Wouldn't it be great if you could come to an organisation like ours and say “ I want to study, you know, whatever, I want to study GRIN2A.”. And we said “Okay, well, according to our database, the GRIN2A patients are located in these areas of the United States. And the majority of them are around these centres. And we already have a collaboration with these centres, so we know how they'll carry out their research. And so, these are going to be the sites we're going to do it.”. And that would speed up the process so much to getting the trial up, running, and then making it successful, because we know where the people are.
Torie Robinson (07:36.951)
So, this benefits, pharma companies, investment companies, and it benefits people and families with epilepsy - maybe not initially, but it makes things happen. So, we can see, like, the next generation of people and families having a better quality of life, right?
M. Scott Perry (07:43.981)
Yeah. Yeah.
M. Scott Perry (07:51.501)
Yeah, I yes, absolutely. I think everyone within the epilepsy community benefits from working together. I mean, surely, I don't have to convince people of that, right? So, like the ability to get these institutions to work together, I don't think that can be understated how important that is because many times institutions are very concerned about making sure they are the best. And PERC is more about making sure we are the best, meaning whoever wants to do research in paediatric epilepsy, let's make sure we are successful together.
Torie Robinson (08:30.583)
And I love that because it's kind of like putting the old-fashioned, sort of “la-dee-da” potential ego(!) to one side and just like “Let's collaborate and work to help the people we really want to help rather than thinking about the image of an organisation.”.
M. Scott Perry (08:37.773)
Yeah.
M. Scott Perry (08:43.181)
Correct, and share your resources, right? So, for, like, my… some places have everything, you know, they've got everything they could need to do very effective research, but then the much smaller institution doesn't have that kind of support, so how can we share that? Again, example: the surgery project that I do, I'm fortunate that my institution provides me with a biostatistician to help with what I do.
Torie Robinson (08:45.559)
Right.
M. Scott Perry (09:07.725)
But if I have other members of my group that have their own projects that they want to do, my biostatistician can help them carry out those projects. So, we just share the resources as much as we can. And ultimately, what I hope, is that PERC gets to a point where PERC is who is providing those resources, that PERC has a biostatistician and project coordinators and maybe folks to help with grant writing. Things like that to help all of the institutions be able to do their work.
Torie Robinson (09:40.503)
And so, you're based in the US at the moment, but are you, is there a firm, sort of “iron frame” around the US or do you see, potentially in the future, there may be a couple of little fingers going out to work with other countries?
M. Scott Perry (09:54.989)
Yeah, I think the organisation as a whole may remain a U.S. organisation as PERC, but I don't see a reason (and I'm speaking for myself here!), I don't see a reason why there would not be opportunities to collaborate, right? There's no reason why protocols that are being carried out within PERC can't be carried out within another collaborative organisation that then the data can be shared, paired together to reach our goal. I see no reason for that. I certainly would not shut the door on the possibility that there would be members outside the US in the organisation. I just think we're probably too early to decide that. We got to get our feet off the ground here to begin with. But I think in the end, with the underlying theme being collaboration is key, to collaborate only within the US is foolish. So, we would need to collaborate outside.
Torie Robinson (10:36.215)
Mmm.
Torie Robinson (10:50.519)
And especially because we have different populations, groups of people around the world. They might not be in parts of the US, they could be, say, in Finland, UK, in Colombia, in Kenya, whatever, right?
M. Scott Perry (10:59.949)
Correct. Different populations, different resources. One of the areas we're interested in is really comparative effectiveness of lots of therapies. I mean, I'm fortunate again. Here I have all the tools I could want to do epilepsy surgery, but not every place has all those tools. Does that mean they don't do epilepsy surgery as well? Are they not as successful? Do they have worse outcomes? Or, maybe it doesn't matter. I don't know. How do we know? We've never compared the different approaches to do something.
Torie Robinson (11:32.215)
And so just tell us a quick little sort of, this is going to sound shallow(!), about your really cool new logo. So, it's a...
M. Scott Perry (11:38.509)
Yeah, well, it was, you know, we thought kind of coming out of the gate as a new nonprofit, we really needed to just really start fresh, rebrand completely. And we wanted a logo that was recognisable, that it was within the epilepsy space. We wanted it to be quite clean. We wanted it to be colourful and really represent collaboration. So, I'm wearing of course the black and white version, but you know, it's got the clear EEG waveform that goes into the P. The P interrupts that waveform, right? That's what we're trying to do. We're trying to interrupt that spike, interrupt that epilepsy. And the colour one is more of a rainbow coloration starting with purple, of course, and then working its way across. So, you know, we really, I mean, I know that's like a small kind of, you know,...
Torie Robinson (12:29.975)
Of course.
M. Scott Perry (12:37.389)
…little step in the whole thing, but I do think it's important that we're clear about that image and recognisable as we go about our work.
Torie Robinson (12:46.487)
I agree. And so, for any clinicians and researchers like yourself, and they want to if they want to learn more, should they just check out the website or con?
M. Scott Perry (12:53.293)
Yeah, the easiest place would be to go to the website for sure. That's pediatricerc.com. It would be a good place to go. Of course, you can find us on social. We have an Instagram page. We've got a LinkedIn account and we've got an X or Twitter account as well. So, you can find us in all those places and get the latest updates on what we're doing and where we want to head.
Torie Robinson
Thank you to Scott for telling us all about the PERC, it’s swish new branding, but, rather, more importantly how junior clinicians and researchers who want to really get going with their career can reach out for a mentor, to join special interest groups, have assistance in patient recruitment for studies, and basically, improve the lives of children with an epilepsy.
If you haven’t already, don’t forget to like, comment, and subscribe to the channel, share the episode with your friends/colleagues, and see you next time!
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M. Scott Perry is the Head of Neurosciences and Director of the Genetic Epilepsy Clinic at the Jane and John Justin Institute for Mind Health at Cook Children’s Medical Center, Fort Worth, TX., USA. He completed his medical degree at the University of Mississippi School of Medicine and general peadiatrics and child neurology training at Emory University before completing Clinical Neurophysiology fellowship at Miami Children’s Hospital. His clinical and research interests include the use of epilepsy surgery for the treatment of intractable childhood epilepsy and the evaluation and treatment of genetic epilepsy syndromes.
He founded the Surgery Special Interest Group of PERC in 2017 and is principal investigator for the Epilepsy Surgery Database – a collaboration of over 20 US paediatric epilepsy centers collecting data on all children evaluated for epilepsy surgery. With over 2000 patients enrolled, this project continues to contribute practice-changing research related to pediatric epilepsy surgery.
In addition to his role at PERC, he serves on the Child Neurology Foundation Board of Directors, Epilepsy Foundation Professional Advisory Board, and the boards of several patient advocacy groups including the Dravet Syndrome Foundation, Lennox Gastaut Foundation and Brain Recovery Project.
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X/Twitter: thenotoriouseeg
LinkedIn: m-scott-perry
Cook Children’s: dr-m-scott-perry
PERC: m-scott-perry
Dravet Foundation: m-scott-perry-md