When something goes wrong with a brain we can’t just get under the hood and poke around. So how do we figure out what’s going wrong? Well sometimes the answer to that question involves watching monkeys watch TV, so we’re taking a trip to a monkey cinema, and along the way learning about the different ways to see inside your head and find faulty wiring.
When something goes wrong with a brain we can’t just get under the hood and poke around. So how do we figure out what’s going wrong? Well sometimes the answer to that question involves watching monkeys watch TV, so we’re taking a trip to a monkey cinema, and along the way learning about the different ways to see inside your head and find faulty wiring.
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[music]
Katie Jensen:
How do you examine the ribbon inside a cat’s-eye marble without cracking it open? Because once you crack that marble, you can’t uncrack it and glue it back together, and then still expect it to roll the same way.
The same goes for us. If our own marble—the brain—has a flaw in the glass, we have to be really careful about how we try and fix it. And this marble is more than just a pretty piece of glass. It’s complex beyond comprehension.
Dr. Viviane Poupon [preview]:
It is the most complex things that we have in our body. When you study the brain, it’s in a box. It’s in your head—you cannot see a brain. You need technology to see it, like MRIs and a lot of complex technologies.
Katie Jensen:
And with something so complicated, there’s a lot that can go wrong.
For example, if you damage one of the temporal lobes tucked behind your ears, you might become a motormouth when before you were a wallflower.
If you hurt your parietal lobe on the top of your head, you might lose your ability to paint and draw, or even tell left from right.
So let’s say you punch me in the face, hard, really hard—enough to make my head whip back, trigger disorientation, and cause me to fall forward, smacking my head firmly onto the cement. Think of a takeout box sliding across the dashboard of a car and crashing into the windshield. That’s my brain catapulting into my frontal bone. Thanks!
Time for a sidewalk craniotomy.
[music]
Katie Jensen:
Depending on how hard I fell, how accurately I’m diagnosed, and how fast I get treatment, your little sucker punch could completely transform my personality from nice guy Bruce Banner into crabby Hulk. And that’s just one type of thing that can go wrong: traumatic brain injury.
Now, as someone who already has a flaw in my own glass—obsessive compulsive disorder—I also want to point out that sometimes those flaws are just a part of the big, beautiful picture. We can try and work against them or even remove them, or with some conditions we can accept that all brains are different and we work with what we’ve got.
So in this episode of Playing With Marbles, we’re taking a look at what happens when there’s a flaw in the glass.
I’m Katie Jensen. This is Playing With Marbles.
[music]
Katie Jensen:
At some point, someone in your life will experience a problem with their brain. It might be happening already. It might even be you. Some of the scary stats belong to diseases like Alzheimer’s. Over 700,000 Canadians are living with it right now. And although it’s perceived to be an elderly disease, symptoms can show up as early as 40. Even worse, over a third of adults over 85 show symptoms of it. It’s really common and we don’t have a cure.
Then there’s damage. Around four per cent of Canadians are currently living with a brain injury. Stroke is the third leading cause of death in Canada. And even things like concussion can put you at a higher risk of brain disease.
[music]
Katie Jensen:
But there are also brains that just function differently, like mine does with OCD. It’s hard to keep track of all the different types of neurodivergence. And I’m not even sure there is such a thing as neurotypical.
Around one-and-a-half per cent of Canadians are diagnosed with autism. Then there’s ADHD, which, by some estimates, affects up to six per cent of Canadian children. And there’s dyslexia, dyspraxia, Tourette’s syndrome. I could go on.
And with such a hefty number of brainteasers to solve, it would be really helpful to know if any of them share a common link. Then we can develop the right treatments.
Dr. Viviane Poupon [preview]:
Because, at the end, you need to understand why a person gets sick.
[music]
Katie Jensen:
That’s Dr. Viviane Poupon, the president and CEO of Brain Canada.
Dr. Viviane Poupon:
Despite a lot of research, and a lot of work, done in collaborate between a lot of players—so the researchers, the physicians, also the industry who is interested in developing solutions to help patients—we still not know enough to really bring new solutions to help patients. And that’s why you need to collaborate. That’s where you need to work all together to make these discoveries.
And that’s where health and science really becomes something that is important and relevant, because you want to be able to see, “Okay, this person was like that” and then to find both commonalities between several patients but also what is singular, what is specific to that one person.
I’ll give you an example. Parkinson’s disease right now, we look at it as one disease. Actually, the physicians themselves and the neuroscientists now are saying, “This is just not one disease. This is probably 10 different diseases.” And so if you treat them as one, you will never understand what is the specificity, and you will never really develop a drug, for example, that is efficient for all.
You need a lot of people, a lot of patients, a lot of samples, a lot of data put together. Then you can really dive into what is called “precision medicine” or “personalized medicine.”
And until you have done that, you’re using old medicines that were developed in the past that alleviate symptoms but they don’t treat, they don’t cure.
[music]
Katie Jensen:
So, here in Canada, we have some very smart scientists gathering the data to build all these subsets. Then perhaps eventually we can do more than just alleviate symptoms.
Gathering data on the brain isn’t simple. We need to know where something happens and when it happens. We need a “when” scan and a “where” scan.
[a howling sound]
Katie Jensen:
Let’s meet a pioneer in brain imaging.
[music]
Katie Jensen:
Dr. Alan Evans helped develop a type of scanner used for detecting Alzheimer’s disease. He’s also the director of the McGill Centre for Integrative Neurosciences. And at his house, brains are on everyone’s mind.
Dr. Alan Evans:
My wife is a speech pathologist. She’s actually doing a remote therapy session right now, with a young child. I think I can say this. That, ah, whatever I might have achieved in my professional career, I never get letters which say, “You changed my child’s life.” And she gets letters like that all the time. So it keeps me grounded.
[music]
Katie Jensen:
Dr. Evans spends a lot of time looking at the results of these different scans. And it turns out there is a common thread to a lot of our marble malfunctions.
Dr. Alan Evans:
A lot of brain disorders can be understood as breakdowns in the efficiency of that wiring.
Katie Jensen:
Yep. Many brain disorders can be explained by faulty wiring.
Dr. Alan Evans:
And so, at one end of the age spectrum, in Alzheimer’s disease you have loss of memory. And this is in part because the circuitry in the brain, which underpins memory, is compromised.
At the other end of the age spectrum, you can also have developmental disorders where that wiring doesn’t develop as it should. And that gives us… gives rise to other kinds of behavioural deficit that we observe in children—like in autism where they have an over-sensitivity to noise, or they have a stereotyping behaviour that they keep on repeating all the time. That’s a result of aberrant wiring in the brain.
[music]
Katie Jensen:
This field of brain science has a name: Connectomics.
And a connectome is a map of all of one brain’s neural connections. If you’ve never seen one, it looks like a rainbow satellite picture of Earth at night, where you can see the outlines of countries based on light patterns. That, but a brain.
The only complete connectome we’ve made so far is of a roundworm. They only have around 300 neurons. Your brain has 86 billion neurons, so mapping them needs all the tools we can get our hands on.
First up: the “when” scan.
Dr. Alan Evans:
We’re using a technology that’s called “electroencephalography” or “EEG.” And EEG allows us to capture very, very subtle changes in the electrical signal in the brain, across the brain, using about 200 to 300 sensors attached to the head, rather like a hairnet.
[music]
Katie Jensen:
That hairnet is hooked up to a machine that gives a readout of your brain waves, on paper. It looks pretty similar to the results of a lie detector test.
Dr. Alan Evans:
It doesn’t tell us, really, in great detail “where,” but it tells us in very, very great detail “when.” So we can capture the timing of different events.
And ah, if you think about this, ah, all of the circuitry in our brains is very, very carefully prescribed to capture timing. Ah, whether it’s visual perception, language expression and… and articulation, memory, cognitive operations, they’re all very, very carefully dependent on a sequence of events between different brain regions.
You get that even slightly wrong and it can have profound consequences. Children will have dyslexia and stuttering. Those are direct examples of a timing error in the brain.
Katie Jensen:
So EEG tells us when signals happen, but we need to combine it with something else to find out where.
That’s where magnetic resonance imaging comes in, MRI.
[music]
Katie Jensen:
There are fewer than 500 MRI machines operating in Canada. And they cost hundreds of dollars an hour to operate.
[music]
Dr. Ravi Menon [preview]:
So MRI is based on a technique called “nuclear magnetic resonance,” which has been around for many, many decades, since the 1940s.
[music]
Katie Jensen:
That’s Dr. Ravi Menon, a co-director of BrainsCAN at Western University. He’s also a bit of a self-proclaimed MRI nerd.
Dr. Ravi Menon:
I find it relaxing. It’s my favourite place to go and hide, because the phone doesn’t ring, you don’t get emails, and nobody bothers you.
[music]
Katie Jensen:
Dr. Menon isn’t taking expensive naps, though. He’s working hard on his research. And maybe the reason he finds MRIs relaxing is because he spends so much time with them. He knows what’s going on inside those noisy machines.
Dr. Ravi Menon:
You lie on a motorized bed, basically. This kind of plastic skeleton-looking thing goes around your head. Then the MRI technologist will, essentially, advance that bed into the middle of this tube.
[MRI motor noise]
Katie Jensen:
If you ever find yourself checking in to an MRI appointment, be prepared to lie totally still inside a giant white tube that sounds like a dryer struggling with an imbalanced load. Inside that tube, the part that goes around your head is a huge magnet and metal coils that emit radiofrequency pulses. When the MRI technician starts the scan, these magnets and coils spin around and around the tube.
Dr. Ravi Menon:
They may give you earplugs in some facilities, because the MRI can be quite loud.
Katie Jensen:
But despite its bark, the MRI doesn’t have a bite. It’s completely painless. It’s just a bit nerve-wracking if you have claustrophobia. And it can take a while—sometimes as long as an hour-and-a-half.
It’s kind of incredible we can map the brain this way. But a map only provides so much information. We can see the roads but we can’t see the traffic.
To see brain functions as they happen, we need something called a “functional MRI.”
Dr. Menon and his team get to work with an MRI that emits seven Teslas of magnetic power. That’s about 600 fridge magnets. And this is the first time I have ever used fridge magnets as a unit of measurement.
Dr. Ravi Menon:
This scanner is the highest magnetic field that is approved by Health Canada and the Food and Drug Administration in the United States. It’s very big. It’s a 27-ton magnet.
And in order to try to make this less imposing, our managing director, Joe Gaddy, came up with the idea of actually digging a pit, so that it doesn’t look as high and you don’t need ladder to climb onto the patient bed.
So this has become a template for facilities all over the world. And this really makes a huge difference to getting people to come back and continue to participate.
Katie Jensen:
They do have an even bigger MRI scanner—one that isn’t approved for use on humans yet. But that doesn’t mean it’s just gathering dust.
[music]
Katie Jensen:
Because it might not have been approved for use on humans, but it has been approved for use on marmosets.
Dr. Ravi Menon:
So, a marmoset is a very cute kind of squirrel-sized or mouse… somewhere between a mouse- and rat-sized, ah, monkey. It is 300 grams, 400 grams, typically. They have these big furry ears. If you’ve ever been to places like Brazil, they come and try to steal your food when you’re eating at an outdoor café, for example.
And they are a very interesting and increasingly popular model for animal research.
Katie Jensen:
Marmosets are great for doing research into human brains, because their brains are actually really similar to ours. And they can experience a lot of the same faulty wiring that we do.
Dr. Ravi Menon:
Well, we’ve learned that marmosets process a lot of visual cues the same way humans do. And marmosets have face areas, and place areas, and frontal eye-field areas that allow them to explore scenes and… and recognize faces and things like that. And not all animals do, of course. A lot of rodents don’t process this at all in the same way.
[music]
Katie Jensen:
And how exactly are these marmosets helping Dr. Menon’s team with their research?
Dr. Ravi Menon:
We have developed a way of scanning marmosets awake in… in our 9.4 Tesla scanner. We are by far the world leader in this area.
And this is very exciting because all the other animals we study are studied under anaesthesia, so you can’t get them to do anything. But with marmosets, you can get them to watch movies and listen to sounds. You can get them to talk to another marmoset.
Katie Jensen:
But first, let’s learn a bit about their lives in the lab. Like is this actually okay?
Dr. Ravi Menon:
So, any animal experiment done at any university has to go through an extraordinarily rigorous process. And that process—animal ethics process—involves people from the general community. So it’s not just a closed environment of university researchers evaluating university researchers, but they’re lawyers, and… and they are shopkeepers, and they are all kinds of people involved in this.
Their cages have all kinds of toys, and driftwood, and… and everything else. They have a really good environmental enrichment.
[music]
Dr. Ravi Menon:
The beauty of this is we’re actually training them. So we train them to hold still; we reward them for holding still. And so when they go into the scanner, they’ve actually been trained for a number of weeks in order to be able to do these things.
So they’re not in pain. We give them little marmoset earplugs so, ah, just as we would give a human. Ah, they get pudding—typically is their favourite, ah, reward—or mango juice. So they get rewarded for holding still.
It’s very carefully controlled environment. Veterinary technologists are overseeing all of this, as well.
And so they actually live a pretty good life.
Katie Jensen:
I would not mind having a job where I got fed dessert all day.
Dr. Ravi Menon:
Yeah, we ran out of pudding today, actually. So it was a little bit of a crisis ‘til, ah, somebody went and got their lunch. So. And that was yogurt. Some of them M&M’s. Ah, you know, they can be a little finnicky. Right? So you have to find…. They’re just like kids. You have to find which foods they… they like.
But they seem to… almost all of them seem to like pudding. So.
Katie Jensen:
Now that we know Dr. Menon’s marmoset helpers are being treated well, let’s dive into the process.
First off, here’s what happens when we take a marmoset to the movies.
[the sound of a film projector operating]
[music]
Dr. Ravi Menon:
So, in the lab, they’re usually in something like a high chair. That’s the typical way, ah, monkeys have been studied. But for the MRI scanner, they actually kind of go in a sphinx-like, ah, pattern. So if you imagine the Sphinx in Egypt, that’s basically what they look like.
And they get a little juice sippy tube. And… and, ah, they get rewarded for holding still and… and staying awake, and all this sort of stuff.
Katie Jensen:
And what kind of movies are they watching together? When you say they’re watching other animals, are they watching like George of the Jungle? Are they watching National Geographic?
Dr. Ravi Menon:
Actually, that’s a terrific question.
So. All our marmosets are lab-bred animals. So they’ve never actually seen a lion or rhinoceros. So those things are relatively meaningless to them. But they have seen plenty of other marmosets.
And so, if you show them movies of humans, well, they’re kind of interested in that because they’ve seen lots of humans. Other animals, they clearly know that they are animals but they don’t know if they are friend or foe, really.
But other marmosets, ah, if you show them marmoset movies—and… and we’ve got some BBC movies, ah—which are, you know, stories of marmosets in cities, in jungles, and things like that, ah, they pay rapt attention to this.
[music]
Katie Jensen:
So. Dr. Menon’s team puts a marmoset into an MRI scanner and then presses “Play” on a marmoset rom-com. How does this help us understand the human brain?
Dr. Ravi Menon:
That turns out to be very interesting. Because you can show them a movie. You can show a human the exact same movie. And then you can look for the commonalities between the brains in the marmoset and the human. And there are plenty.
And… and so this further reinforces the importance of marmosets as a good model for the human brain.
Katie Jensen:
And this technique of looking at marmosets to understand our brains can also teach us about neurodivergence.
Dr. Ravi Menon:
And there is a transgenic autism model, for example, for marmosets. If you watch the face of one of those transgenic autistic marmosets, it’s just like watching a human child. It really is.
So these are really wonderful models that can give us insight into what’s going on in the non-human primate brain, which then gives us a clue as to what’s going on in the human primate brain.
Katie Jensen:
So, Dr. Menon has a ridiculously fun job, but it does exist for a reason. All that monkey business lays the groundwork for finding treatments for neurological diseases.
[music]
Katie Jensen:
Faulty wiring in the brain can be devastating. Those neurological diseases we keep talking about often have no cure. Some don’t even have any treatments available. They can be debilitating and fatal.
That’s why research like Dr. Ravi Menon’s, and everyone else we’ve mentioned, is so important. There are people living with these diseases.
And the more we know about the brain, the closer we inch toward finding treatments and even cures.
[music]
Katie Jensen:
Let’s take a closer look at one specific brain disorder that Canadian researchers are working hard to solve: Amyotrophic Lateral Sclerosis, ALS.
Here’s Dr. Viviane Poupon to explain more.
Dr. Viviane Poupon:
Yeah, it’s known better as “Lou Gehrig’s disease.” And it’s basically a diagnosis where the… their muscles stop to function, because their brain is no longer directing them to move. And so usually from the time you have a diagnosis, within two to five years you are actually going to die. And most of time because you can’t breathe, so you’re going to suffocate. Ah, so it’s a… it’s a very, very, very, ah, awful disease. It really evolves rapidly. And ah, and… and it’s a painful disease.
Katie Jensen:
You might also know it as Motor Neurone Disease.
Dr. Viviane Poupon:
Usually you are in your 30s or 40s when you start developing these symptoms. And ah, you’re still in the middle of your… of your life. And… and you know you have this diagnosis that now you have a disease that is not curable and that you’re going to rapidly stop being able to walk by yourself, to speak, and eventually to breathe.
Dr. Sanjay Kalra [preview]:
So, ALS is a neurological disorder. And it affects primarily adults. It begins any time in adulthood, from 18 years of age and upwards. And it’s… it’s relatively rare. It occurs about 1-in-50,000 people per year. And here in Edmonton, we’re seeing about two to three new cases per month.
Katie Jensen:
That’s Dr. Sanjay Kalra. He’s a professor of neurology in the Department of Medicine, at the University of Alberta in Edmonton. He’s also the founder of the Canadian ALS Neuroimaging Consortium, which is a mouthful, so we tend to call it CALSNIC.
He’s spent the better part of his career researching how ALS appears.
Dr. Sanjay Kalra:
The condition affects primarily the motor system. So this would include those areas of the brain that are responsible for us to move our limbs, for us to speak, for us to swallow.
So the condition affects the motor cortex, those projecting motor neurons, and the ones that are in the spinal cord as well. It’s doesn’t actually directly affect muscles, although the muscles get weak. It’s the control of those muscles. It’s the mechanism that controls those muscles—the wiring—that degenerates.
The disease can begin in many ways. It could start with, you know, weakness in your foot, your hand, or difficulties with speech or swallowing. That’s what we typically see.
Katie Jensen:
And because the symptoms of ALS can start in pretty much any part of the body, that makes it hard to pin down.
Dr. Sanjay Kalra:
It is very difficult to diagnose, indeed, because it is rare, and because the symptoms are very variable at onset. If someone has a weakness in their foot, one might think, “It might be a pinched nerve in their back.” If it’s, ah, problems with speech initially, the initial diagnosis then often is stroke. But then because the symptoms continue to progress and start involving other parts of the body, it becomes clear that it is not that initial diagnosis—that it is something that is involving the entire nervous system and potentially something degenerative.
Katie Jensen:
ALS’s ability to disguise itself makes it really scary. Because when you are diagnosed with it, you might not have much time left.
Dr. Sanjay Kalra:
Typically patients live between three to five years. There is a percentage that live beyond that—upwards of 10 years or even more. And some have, unfortunately, a much more rapid progression.
But it doesn’t matter, ah, where you live or how the disease began, really.
Now, there are some patients where the lifespan might be predictably shorter. So for example, if their condition begins with speech and swallowing, or breathing difficulties right at outset, those patients, unfortunately, would have a shorter lifespan. Whereas if it beings in the legs, they typically might have a longer lifespan.
Katie Jensen:
So what we’re dealing with here is a degenerative fatal disease that’s hard to diagnose, with no known treatment or cure.
[music]
Katie Jensen:
But Dr. Kalra has an idea of where to start in order to get a better understanding of what contributes to someone getting ALS.
Dr. Sanjay Kalra:
Biomarkers are really, really important. And ah, it is an area of intense research.
Katie Jensen:
Biomarkers are a type of measurement used by doctors to pinpoint how a disease is progressing in your body.
Dr. Sanjay Kalra:
I always like to compare, for example, to diabetes, where if the suspicion of diabetes is there, one can do a blood test measuring the glucose in the blood, in a very accurate manner. If that blood glucose level is elevated, one would say this person has potentially diabetes. Then you would use medications and, ah, control that blood glucose level. You can actually measure the response to the medication. And this is exactly what we need in ALS right now.
Katie Jensen:
By knowing the biomarkers of a disease, you can pinpoint when someone gets sick, how sick they are, and how to treat or cure their symptoms.
Dr. Sanjay Kalra:
Right now we have the neurological exam. We have a disability scale called the “ALS FRS,” a functional rating scale. And that’s not your primary outcome measure. It’s not objective. It’s not really quantitative. We also need a blood test, or we need an MRI measurement that can actually tell us exactly where the disease is, how severe the disease is, and if it is responding to current or new… new therapies.
Katie Jensen:
So how do we do this for ALS?
Dr. Sanjay Kalra:
One thing that we’re going to look at is actually how epigenetics plays a role in, ah, the onset of ALS, and at what age it begins at.
Katie Jensen:
And for those who aren’t familiar with epigenetics?
Dr. Sanjay Kalra:
So, epigenetics is how our genetic makeup is changed by the environment. And the idea is to see how our genetic makeup changes with age, and if that is accelerated in some individuals, and if that actually plays a part in the onset of ALS and how that ALS might be different—and how other potential biomarkers or things that we can measure are associated with that.
Katie Jensen:
So Dr. Kalra’s researchers are on the hunt for biomarkers to reveal the onset of ALS in patients. And because ALS is tricky to diagnose, of course it will also be tricky to find the biomarkers for it using the medical imaging technology we have handy.
Dr. Sanjay Kalra:
You can do many different types of MRI scans to look at different aspects of, you know, the health or disease of a tissue, or of an organ. Where, you know, we’re used to doing MRIs where a radiologist looks at the scan and sees tumours or strokes in the brain. But, in fact, those scans don’t show the pathology of ALS; and that’s been the real challenge.
Katie Jensen:
But Dr. Kalra has picked up a thing or two in his career of researching this shape-shifting illness.
Dr. Sanjay Kalra:
But if you use certain techniques, certain specialized MRI techniques, you actually can measure or visualize that disease. Diffusion Tensor Imaging is one of those. And it actually has a growing body of literature that supports how it can be potentially helpful in ALS.
Katie Jensen:
We haven’t heard about that type of scan on this podcast yet. So, what’s Diffusion Tensor Imaging?
[music]
Dr. Sanjay Kalra:
What it actually is looking at is the wiring of the brain. And so that’s focusing on what we call “the white matter.” And the white matter is… contains the… the wires that connect different parts of the brain within itself and then also down to the spinal cord. And this… there are certain diseases that affect white matter more than the gray matter. And we know that ALS does affect the white matter quite profoundly.
So Diffusion Tensor Imaging has shown how the white matter—the… the wiring of the brain—is damaged in ALS. Studies have also shown how other parts of the brain are affected in ALS. So that actually is so important.
Katie Jensen:
Want to know another thing Diffusion Tensor Imaging is good for?
Dr. Sanjay Kalra:
You can actually follow longitudinally the progressing degeneration in ALS in the brain.
Katie Jensen:
Meaning how the brain degenerates over time.
Dr. Sanjay Kalra:
And that is extremely important. We’re trying to find techniques that can show progressive degeneration, because then you can actually incorporate that into a clinical trial. This is the biggest thrust of the biomarker research that I have: finding a biomarker that one can use in clinical trials, so that you can more accurately measure change of the effect of, you know, novel treatment.
And if you could do that, then you can find an effective treatment much sooner and more efficiently.
Katie Jensen:
So it feels like we’re getting close to figuring out how to look at ALS in the body. We need to find the biomarkers that show the onset of ALS. And we can potentially find those biomarkers by using Diffusion Tensor Imaging MRI.
This all sounds easy in theory but, keep in mind, ALS shows up differently in every patient. For example, one person affected by the illness can have problems moving their fingers, while another might have been diagnosed because of slurred speech. How do we keep track of a disease that has so many differing symptoms?
This is the puzzle Dr. Kalra wants to solve. And he plans to do that by keeping a huge database of information on ALS patients, and their symptoms over time. It’s called the Comprehensive Analysis Platform To Understand, Remedy, and Eliminate ALS. Let’s just call it CAPTURE-ALS for short.
Dr. Sanjay Kalra:
So, CAPTURE-ALS fundamentally is going to address this issue of heterogeneity in ALS: how patients are very different amongst themselves in terms of how the disease begins, how it progresses; and also the fact that there has to be a biological heterogeneity amongst patients as well, you know, in terms of genes and, ah, pathophysiological mechanisms.
So that will be at this core, to try to understand heterogeneity in ALS. And to do that is going to bring together, you know, a multidisciplinary group of scientists and clinicians. It will involve patients, primarily at the centre, who will be giving of their time and energy.
All this data that will be collected in this platform will be made available. It will be in a bio-repository accessible by researchers in Canada and around the world really. And it will be under the mandate of open science.
Katie Jensen:
This database will be created using the open science concepts we talked about in Episode One.
Dr. Sanjay Kalra:
So this will just really accelerate the pace of science, experiments, studies, and discovery in ALS.
Katie Jensen:
This new database is very exciting for researchers looking to understand the causes and progression of ALS. But it also has a simpler use as well—one that aims to help patients navigate a scary unpredictable brain disorder.
Dr. Sanjay Kalra:
One very important area is to be able to provide, ah, some counselling or some prediction as to how people will progress.
When I first see a patient with ALS, one of the first questions they ask is, “How long do I have to live?” or “What’s going to happen to me next?” “When will I not be able to walk?” “When will my speech be affected?” So, how is this disease going to progress? And… and right now the simple answer to that, and very unsatisfying answer, is, “I’m really not sure. You know, it progresses at a variable rate for everybody. It will likely be linear for you at the same rate. But bottom line is there isn’t really a good tool to provide a prediction.”
So what we’re going to do is we have people that have expertise in machine learning and other advanced computational methods. They will be using all this massive data, that we’ll be collecting, and developing models and developing tools so that we can predict progression. So for a single patient we’ll be able to say, “This is where we predict things will be a year from now,” etc.
So that’s going to be a… that’s the core part of this initial launch, ah, with CAPTURE-ALS.
Katie Jensen:
And this new initiative wouldn’t be possible without the help of Brain Canada. Let’s bring back Viviane.
Dr. Viviane Poupon:
Brain Canada is a national, charitable organization founded over 20 years ago. And what we do is we strive to better understand the brain in health and illness. And we aim to improve lives and have a positive impact on society.
The way we function is we work on looking at excellence. And we also look at risk. We are ready to fund high-quality, high-risk, high-impact research—really bold research.
Katie Jensen:
And according to Viviane, that’s exactly the type of potential she sees from CAPTURE-ALS.
Dr. Viviane Poupon:
They’re working under open science principles. So although they’re actually, you know, interested in clinical research—so that innovation where you think secrecy would come first—actually they are trying to implement these clinical trials within an open science umbrella. Really, they’re helping throughout the country to coordinate these clinical trials and to be able to test as many solutions that are developed, as fast as possible.
[music]
Katie Jensen:
So, I’m curious about if there are any brain diseases that you’re optimistic that we’re going to solve in our lifetime perhaps because of open science becoming a more general practice.
Dr. Viviane Poupon:
I really hope we are going to make breakthroughs for most of the brain disorders that are affecting your brain right now. Because, to be frank, there is, as I said earlier, no cure for the diseases of the brain. And… and some of these diseases can, you know, have a very high toll on people or just be a death sentence.
So my first hope is that we can just add a few more years. You know, if… if just, you know, finding something—a treatment, a breakthrough—that will just give a couple more years to someone who is just given a diagnostic of ALS, or even Alzheimer’s that is not life-threatening but can really have a high burden on people, it will change the outcome of the life of a person.
I’m seeing more and more collaboration—between institutions, between researchers—using open science as a way of doing things, ah, throughout the country and even internationally. And once we really are better able to understand the cause of the disease—and I think this is something that is achievable during our lifetime—then the cure will just come.
We know how to develop drugs. What we need to understand is what they need to target, where… where they need to act.
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Katie Jensen:
Thanks for tuning in to another episode of Playing With Marbles.
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Playing With Marbles is a Vocal Fry Studios production in partnership with Brain Canada. The executive producer is Jay Cockburn. Our associate producer is Max Collins. And I’m Katie Jensen. Thanks for playing.
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