WEBVTT
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I'm Jon Strum, and this is Real Talk MS.
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It's June 2nd, and we have a lot to talk about.
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Last week, the Consortium of Multiple Sclerosis Centers, better known by the
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acronym CMSC, hosted its annual meeting in Charlotte, North Carolina,
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where we had a chance to talk with some of the top MS experts in the world.
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We'll be sharing those conversations over the next few episodes of the podcast.
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And in what has become an annual tradition at this conference, Dr.
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Kathy Zukowski, the National MS Society's Associate Vice President of Research,
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joined me to share her impressions of the sessions and presentations that especially stood out to her.
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In a moment, we'll hear my conversation with Dr. Kathy Zackowski.
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Each year, one of my favorite parts of the Consortium of MS Center's annual meeting is when Dr.
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Kathy Zukowski, the Associate Vice President of Research at the National MS
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Society, drops by to share her perspective on some of the sessions at the conference
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that she found particularly interesting.
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As you can see, she takes a lot of very careful notes.
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Welcome back to the podcast, Dr. Zackowski.
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Thank you for having me. It's a pleasure to be back.
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It would not be the same conference if I didn't get to talk to you.
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It's truly my favorite part.
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You know, there's an awful lot being presented this year,more sessions
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and ever before. Which presentations have you found to be noteworthy?
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Yeah, so it's only the beginning, right? Today is day one. So already we've had Dr.
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Anthony Feinstein give a really great keynote speech.
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And what I really appreciated about his talk, Dr.
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Feinstein is a psychiatrist from Canada who has been in the field of MS for a very long time.
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But he really highlighted historically how we've learned about depression and cognition over time.
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And I thought it was really great how he linked the importance of imaging to
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our understanding of especially depression and how we've learned to not view
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depression as a reaction to how people respond to the disease,
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but actually as it's integrated with the disease.
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And so that really has changed how we treat depression because we know it has
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a biologic relevance to MS.
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And I know that's not new news, but it was really nice to hear how we came to
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that decision and the studies that were required to come to that understanding.
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And another thing, I guess, with his talk was understanding the importance of
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cognitive reserve and how it's not just you need to work hard and play hard, is how he put it.
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And my understanding of that was you We need to work your brain,
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so we need to be doing focused activities with how we think,
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but then we also need to play, and by that we need to be social and make lots
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of connections, because both of those things help build what's called cognitive reserve.
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And when you have MS, if cognition starts to become a problem,
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the more you've built up your cognitive reserve, the less you will feel some
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of those changes in your overall function.
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You know, one of the things I really appreciate about Dr. Feinstein is when
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you hear a therapist talk about something, very often you come away thinking,
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well, they spend all day talking to their patients and listening to people and
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they have opinions, but it's kind of a soft science until you meet Anthony Feinstein
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because he brings all the evidence and he has it.
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He actually, as we heard,he does functional MRI so he can see what
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part of the brain is being activated and how that relates to MS and other things.
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And, yeah, he's been doing it a long time. And in addition to all his research,
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his practice focuses on people living with MS.
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Yeah, and I think he set a really nice precedent in that he ran a really large
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clinical trial that ended about two years ago.
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And he didn't meet his primary outcome, but he has done enough of secondary
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analyses to pull out of that. What are the important elements of that trial?
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I think that's a really important lesson for many scientists to take home, too.
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And it's great to have that lesson in analysis come from a therapist, right?
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Yeah, definitely. Yeah, you're right. He's very good at translating all of the
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science into why do I care?
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If I have MS, why do I care about all this?
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Right. And he can tell you exactly why you should. Exactly. Right.
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What else happened today?
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So, well, I'm going to tell you about yesterday. So I was in an all-day meeting.
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It was called the Fellowship Forum, and it was about 100 fellows.
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So these are physicians and other clinician providers who are still in training,
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but at the very tail end of their training, before they start out on their career in MS.
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And they're invited for a day
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where I took part in a couple of panels where about 10 of us who are...
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Scientists or clinicians in MS basically talked about how we got to this part of our career.
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Like, how did we end up studying MS? How did we end up treating MS?
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Why do we want careers in this area?
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And I thought it was just really important to be talking to that younger generation.
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So the panel was like, we're here now doing it.
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And then everyone in the audience, 100 fellows, they're the future of what we're expecting.
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And there is a really bright future for this. I mean, And the onset of AI,
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the use of more technology, all of those things are just at the very beginning
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stages. And I think we need these young scientists and strong minds to move the field forward.
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Absolutely. Having that next generation of MS experts is really, really important.
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And I don't know if everybody watching us knows how the National MS Society
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for years has had a formal program to recruit and support MS fellows so that
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next generation of experts will be there.
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Yeah, I mean, we even started a program for undergraduates. So it's a summer
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program, and it's essentially for college students who might be interested in
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science but have never had an opportunity to really participate in a research laboratory.
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So the society has picked out 14 of these individuals, and we've also paired
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them with established scientists in the MS area.
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And we pay the scientist to bring these people on, and then we pay the student
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to be able to move to where that scientist is, spend 10 weeks in their laboratory, and learn about MS.
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And the hope is that before you even made a decision what kind of work you're
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going to do, we want to get you excited about MS research.
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It just got me excited. Sorry I missed that opportunity a few decades ago.
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Yeah, I think it's really fun. This is only our second year,
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but the first year reviews were really good.
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Both the mentors and the students loved it. So it seems like it's going well.
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Oh, that's awesome.
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Anything else occur to you in the last day and a half?
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Well, one thing I want to talk about that hasn't happened yet,
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but will happen tomorrow morning, but I think is really interesting is there's
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a small symposium called the International Symposium on Gait and Balance in MS.
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And it's a day-long program that happens every year, and it's really designed
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to help give scientists a place to network, really focused on gait and balance
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and multiple sclerosis.
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And this year, we are collaborating with the consortium of MS centers.
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And so we're having a session, a morning session tomorrow that is focused on
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wheelchair falls and safety.
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And so we brought three different scientists in to talk about different aspects,
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because you might not even think that someone in a wheelchair would be at risk of falling.
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But it turns out that there's studies and there's evidence that this is a problem
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and that we need to better understand
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how to keep people who have to be in wheelchairs safe and mobile,
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but teach the providers also, like, how best to help those patients.
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You know, one of the issues I should explain to our viewers is,
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when you come to a conference like this, you can't be everywhere at once.
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You need to make hard choices sometimes, and there are some conflicts that won't
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go away, that you can't get out of.
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That's a session I'm going to have to miss. So…
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I contacted one of those experts, one of those scientists who's going to be presenting tomorrow.
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And my audience will be happy to know that Dr. Laura Rice will be joining us
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in just a couple of weeks.
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She has already given me a preview on what she's talking about tomorrow.
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So we still get to share that, even though I don't get to sit in on the session.
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That's great. I'm glad to hear that you pulled her out. I think she'll be really
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great. And, yeah, it's just sort of a unique aspect of what people have to get
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through if they're living in a wheelchair.
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Very true. Absolutely. And you're right. People think, oh, you're in a chair.
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You can't fall. Well, not only can you, but when you fall and there's a chair
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involved, you can get seriously injured.
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Right. Right. So we need to understand what do we know now? What are the gaps?
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And how do we teach providers and people with MS the important things to be careful about?
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Especially when people in the rehabilitation field are reminding us how important
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exercise is at every level of ability.
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And that includes people who may be wheelchair bound.
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They need to clearly understand how to exercise safely so they get the benefit
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without putting themselves at risk, right? Right.
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And one of the speakers, Stephanie Silvera, is going to be talking about a specific
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study that she's doing, which is looking at exercise for people who are in wheelchairs.
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So, right, it's all, you know, that's the beauty of this meeting is really being
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able to invite the comprehensive care team here and to share, you know,
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results from studies, but also to network and to build collaborations so that
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we can solve some of these things more quickly.
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I know your professional background is in rehabilitation, and you are an associate
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vice president of research, which involves more than rehabilitation.
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Have you noticed an increase in the science being presented at CMSC?
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I have. This year has been astounding, actually. Very, very strong changes in
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programming that have really been exciting for me to watch. So I have to make choices.
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Like, so you can't, there are, at this particular meeting, there are multiple
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sessions at the same time. So you have to choose which one to go to.
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And I'm so glad that some of the sessions are being recorded because that's
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what I'll have to do because you can't be in more than one place at one time.
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But I've been, yeah, very excited about these changes. I hope that that continues
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because I also think it's important for physicians to be aware of some of these
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issues that they might not see day to day in their clinic.
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But the other rehabilitation providers really have to grapple with.
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And it's important for the rehabilitation professionals to interact with the
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physicians and understand where they're coming from.
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So this conference allows all of that to happen.
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And at the same time, I think that there is a greater emphasis on bringing rehabilitation
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research more into line with the steps, focus, and analysis that's applied to pure science research.
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Some of that hard analytical approach, I think, being applied to studies in
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rehabilitation makes what we were talking about with Dr. Feinstein before.
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All of a sudden, you have evidence that makes the argument for you.
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Right, right. Because basic biomedical research, you can often control variables
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in a very different way than you do when you're working on a behavioral choice
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or a rehabilitation approach.
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And I think some of those issues need to be, everyone needs to be aware of so
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that we can still build rigorous scientific trials around these behavior interventions.
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Good point. As you were saying that, I was thinking such a difference between
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working with a molecule and working with a whole person. Right, exactly.
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And, you know, and the reality is lots of research is done in animal models,
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which is so needed because you can control those variables.
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But we have to be able to translate that to people.
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And so having, you know, scientists that are trained in human behavior,
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I think that's going to be really important for making that big leap from an
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animal model to a translation to people.
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We're seeing great science this year. We're seeing cutting-edge rehabilitation being presented.
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I think this year is one of the best lineups in terms of content that I've seen in a very long time.
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Yeah, yeah, I agree. Even the Whitaker, so there's a Whitaker research track,
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and there's a couple of people in there that are not basic biomedical researchers.
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And so that track is really designed for kind of the up-and-coming young scientists.
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So it was great to see there's one person looking at aging and MS and really
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trying to not just understand aging using imaging, but using imaging and then
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relating it to clinical factors.
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And so I think that's an example of how this conference offers that opportunity
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and seems to be growing in that direction.
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Dr. Kathy Zukowski, every year this is the conversation I look forward to the
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most. I want to thank you so much for giving us a little bit of your time on
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what I know is an incredibly busy day.
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Well, thank you for giving me a platform to share my thoughts.
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I really appreciate that.
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I caught up with Dr. Valerie Block and Dr.
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Riley Bove on the first day of the CMSC annual meeting, and we discussed
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how wearable devices and digital tools are finding their way into MS care and
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how those tools can actually improve the quality of care for people living with MS.
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In a moment, we'll hear that conversation.
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Today at CMSC, Drs. Valerie Block and Riley Bove were part of a presentation
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on integrating wearable technology into MS clinical care.
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Dr. Block is a physical therapist and assistant professor of physical therapy
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at the UCSF Weill Institute for Neurosciences, and Dr.
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Beauvais is a practicing neurologist and clinician scientist at the UCSF Weill
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Institute for Neurosciences.
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You know, despite the massive amounts of money and development in digital tools,
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very few have actually crossed the divide into routine clinical care.
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So I'll ask each of you, what's the primary roadblock preventing a validated
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digital biomarker or wearable tool from becoming a standard part of an outpatient neurology visit?
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Is it an interface problem, a billing issue, a workflow challenge,
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or something else? Dr. Block?
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Well, I think, for one, it's all of the above.
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And for two, it's that MS is so heterogeneous. So you have to find a tool that
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can pick up the differences for all different people with MS and their symptoms and problems,
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and maybe what's going to predict their disability going forward.
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Dr. Bove, same question.
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Also, all of the above. I think we know that
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different people with MS want to use different tools for different reasons.
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And so there's a gap where we need something that can ingest all the different
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tools and give us the same information.
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On the clinician side, we need that information to get all the way through to
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the clinician's medical record, which is where they make the decisions.
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And that is a workflow issue, and it is a billing issue because that has to
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take up some part of the clinical visit.
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Dr. Bove, you've worked on the Bridge Precision Medicine dashboard to bring
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data directly to the point of care.
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Can this kind of a tool effectively display months of continuous step or sleep
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data to a neurologist in a way that's
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interpretable in what tends to be a relatively brief clinical visit.
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That's absolutely our hope. We're in sort of the trials phase of this because you have to show it.
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But from sort of what we've seen so far, clinicians really appreciate being
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able to see trends over time,
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being able to see when a patient's function dips and discussing with the patient
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why that was so, and also measuring whether the interventions that they recommend
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happened and reached the target goal.
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Dr. Block, as a physical therapist and researcher, how does the clinical utility
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of this data differ between a neurology evaluation and a physical therapy or
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rehabilitation setting?
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Well, I think what we're trying to do is change behavior more.
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And so using this information maybe as biofeedback or to have a goal,
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like an attainable goal for them to do, and then we have tools and treatment methods to reach those.
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And I think that having something that's actionable, like what Dr.
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Bovey's built with Bridge, and being able to pull that into the clinic,
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not only so I can see and I can act on that data, but also so the patient can see the data,
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and then that can help motivate them and help give them the feedback that they're actually doing better.
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Because a lot of times I tell them you're doing better from when you first came
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in and they don't believe it because they don't see it because they've been