Episode 457: From the 2026 CMSC Annual Meeting with Dr. Kathy Zackowski, Dr. Valerie Block, and Dr. Riley Bove

0:02 I'm Jon Strum, and this is Real Talk MS. It's June 2nd, and we have a lot to talk about. Last week, the Consortium of Multiple Sclerosis Centers, better known by the acronym CMSC, hosted its annual meeting in Charlotte, North Carolina, where we had a chance to talk with some of the top MS experts in the world. We'll be sharing those conversations over the next few episodes of the podcast. And in what has become an annual tradition at this conference, Dr.

0:44 Kathy Zukowski, the National MS Society's Associate Vice President of Research, joined me to share her impressions of the sessions and presentations that especially stood out to her. In a moment, we'll hear my conversation with Dr. Kathy Zackowski. Each year, one of my favorite parts of the Consortium of MS Center's annual meeting is when Dr. Kathy Zukowski, the Associate Vice President of Research at the National MS Society, drops by to share her perspective on some of the sessions at the conference that she found particularly interesting. As you can see, she takes a lot of very careful notes.

1:26 Welcome back to the podcast, Dr. Zackowski. Thank you for having me. It's a pleasure to be back. It would not be the same conference if I didn't get to talk to you. It's truly my favorite part. You know, there's an awful lot being presented this year,more sessions and ever before. Which presentations have you found to be noteworthy? Yeah, so it's only the beginning, right? Today is day one. So already we've had Dr. Anthony Feinstein give a really great keynote speech. And what I really appreciated about his talk, Dr. Feinstein is a psychiatrist from Canada who has been in the field of MS for a very long time. But he really highlighted historically how we've learned about depression and cognition over time.

2:13 And I thought it was really great how he linked the importance of imaging to our understanding of especially depression and how we've learned to not view depression as a reaction to how people respond to the disease, but actually as it's integrated with the disease. And so that really has changed how we treat depression because we know it has a biologic relevance to MS. And I know that's not new news, but it was really nice to hear how we came to that decision and the studies that were required to come to that understanding. And another thing, I guess, with his talk was understanding the importance of cognitive reserve and how it's not just you need to work hard and play hard, is how he put it.

3:00 And my understanding of that was you We need to work your brain, so we need to be doing focused activities with how we think, but then we also need to play, and by that we need to be social and make lots of connections, because both of those things help build what's called cognitive reserve. And when you have MS, if cognition starts to become a problem, the more you've built up your cognitive reserve, the less you will feel some of those changes in your overall function. You know, one of the things I really appreciate about Dr. Feinstein is when you hear a therapist talk about something, very often you come away thinking, well, they spend all day talking to their patients and listening to people and they have opinions, but it's kind of a soft science until you meet Anthony Feinstein because he brings all the evidence and he has it.

3:53 He actually, as we heard,he does functional MRI so he can see what part of the brain is being activated and how that relates to MS and other things. And, yeah, he's been doing it a long time. And in addition to all his research, his practice focuses on people living with MS. Yeah, and I think he set a really nice precedent in that he ran a really large clinical trial that ended about two years ago. And he didn't meet his primary outcome, but he has done enough of secondary analyses to pull out of that. What are the important elements of that trial? I think that's a really important lesson for many scientists to take home, too.

4:33 And it's great to have that lesson in analysis come from a therapist, right? Yeah, definitely. Yeah, you're right. He's very good at translating all of the science into why do I care? If I have MS, why do I care about all this? Right. And he can tell you exactly why you should. Exactly. Right. What else happened today? So, well, I'm going to tell you about yesterday. So I was in an all-day meeting. It was called the Fellowship Forum, and it was about 100 fellows. So these are physicians and other clinician providers who are still in training, but at the very tail end of their training, before they start out on their career in MS.

5:14 And they're invited for a day where I took part in a couple of panels where about 10 of us who are... Scientists or clinicians in MS basically talked about how we got to this part of our career. Like, how did we end up studying MS? How did we end up treating MS? Why do we want careers in this area? And I thought it was just really important to be talking to that younger generation. So the panel was like, we're here now doing it. And then everyone in the audience, 100 fellows, they're the future of what we're expecting. And there is a really bright future for this. I mean, And the onset of AI, the use of more technology, all of those things are just at the very beginning stages. And I think we need these young scientists and strong minds to move the field forward.

6:04 Absolutely. Having that next generation of MS experts is really, really important. And I don't know if everybody watching us knows how the National MS Society for years has had a formal program to recruit and support MS fellows so that next generation of experts will be there. Yeah, I mean, we even started a program for undergraduates. So it's a summer program, and it's essentially for college students who might be interested in science but have never had an opportunity to really participate in a research laboratory. So the society has picked out 14 of these individuals, and we've also paired them with established scientists in the MS area.

6:48 And we pay the scientist to bring these people on, and then we pay the student to be able to move to where that scientist is, spend 10 weeks in their laboratory, and learn about MS. And the hope is that before you even made a decision what kind of work you're going to do, we want to get you excited about MS research. It just got me excited. Sorry I missed that opportunity a few decades ago. Yeah, I think it's really fun. This is only our second year, but the first year reviews were really good. Both the mentors and the students loved it. So it seems like it's going well. Oh, that's awesome. Anything else occur to you in the last day and a half? Well, one thing I want to talk about that hasn't happened yet, but will happen tomorrow morning, but I think is really interesting is there's a small symposium called the International Symposium on Gait and Balance in MS.

7:38 And it's a day-long program that happens every year, and it's really designed to help give scientists a place to network, really focused on gait and balance and multiple sclerosis. And this year, we are collaborating with the consortium of MS centers. And so we're having a session, a morning session tomorrow that is focused on wheelchair falls and safety. And so we brought three different scientists in to talk about different aspects, because you might not even think that someone in a wheelchair would be at risk of falling. But it turns out that there's studies and there's evidence that this is a problem and that we need to better understand how to keep people who have to be in wheelchairs safe and mobile, but teach the providers also, like, how best to help those patients.

8:32 You know, one of the issues I should explain to our viewers is, when you come to a conference like this, you can't be everywhere at once. You need to make hard choices sometimes, and there are some conflicts that won't go away, that you can't get out of. That's a session I'm going to have to miss. So… I contacted one of those experts, one of those scientists who's going to be presenting tomorrow. And my audience will be happy to know that Dr. Laura Rice will be joining us in just a couple of weeks. She has already given me a preview on what she's talking about tomorrow. So we still get to share that, even though I don't get to sit in on the session.

9:13 That's great. I'm glad to hear that you pulled her out. I think she'll be really great. And, yeah, it's just sort of a unique aspect of what people have to get through if they're living in a wheelchair. Very true. Absolutely. And you're right. People think, oh, you're in a chair. You can't fall. Well, not only can you, but when you fall and there's a chair involved, you can get seriously injured. Right. Right. So we need to understand what do we know now? What are the gaps? And how do we teach providers and people with MS the important things to be careful about? Especially when people in the rehabilitation field are reminding us how important exercise is at every level of ability.

9:55 And that includes people who may be wheelchair bound. They need to clearly understand how to exercise safely so they get the benefit without putting themselves at risk, right? Right. And one of the speakers, Stephanie Silvera, is going to be talking about a specific study that she's doing, which is looking at exercise for people who are in wheelchairs. So, right, it's all, you know, that's the beauty of this meeting is really being able to invite the comprehensive care team here and to share, you know, results from studies, but also to network and to build collaborations so that we can solve some of these things more quickly. I know your professional background is in rehabilitation, and you are an associate vice president of research, which involves more than rehabilitation.

10:44 Have you noticed an increase in the science being presented at CMSC? I have. This year has been astounding, actually. Very, very strong changes in programming that have really been exciting for me to watch. So I have to make choices. Like, so you can't, there are, at this particular meeting, there are multiple sessions at the same time. So you have to choose which one to go to. And I'm so glad that some of the sessions are being recorded because that's what I'll have to do because you can't be in more than one place at one time. But I've been, yeah, very excited about these changes. I hope that that continues because I also think it's important for physicians to be aware of some of these issues that they might not see day to day in their clinic.

11:28 But the other rehabilitation providers really have to grapple with. And it's important for the rehabilitation professionals to interact with the physicians and understand where they're coming from. So this conference allows all of that to happen. And at the same time, I think that there is a greater emphasis on bringing rehabilitation research more into line with the steps, focus, and analysis that's applied to pure science research. Some of that hard analytical approach, I think, being applied to studies in rehabilitation makes what we were talking about with Dr. Feinstein before. All of a sudden, you have evidence that makes the argument for you.

12:11 Right, right. Because basic biomedical research, you can often control variables in a very different way than you do when you're working on a behavioral choice or a rehabilitation approach. And I think some of those issues need to be, everyone needs to be aware of so that we can still build rigorous scientific trials around these behavior interventions. Good point. As you were saying that, I was thinking such a difference between working with a molecule and working with a whole person. Right, exactly. And, you know, and the reality is lots of research is done in animal models, which is so needed because you can control those variables. But we have to be able to translate that to people.

12:51 And so having, you know, scientists that are trained in human behavior, I think that's going to be really important for making that big leap from an animal model to a translation to people. We're seeing great science this year. We're seeing cutting-edge rehabilitation being presented. I think this year is one of the best lineups in terms of content that I've seen in a very long time. Yeah, yeah, I agree. Even the Whitaker, so there's a Whitaker research track, and there's a couple of people in there that are not basic biomedical researchers. And so that track is really designed for kind of the up-and-coming young scientists. So it was great to see there's one person looking at aging and MS and really trying to not just understand aging using imaging, but using imaging and then relating it to clinical factors.

13:41 And so I think that's an example of how this conference offers that opportunity and seems to be growing in that direction. Dr. Kathy Zukowski, every year this is the conversation I look forward to the most. I want to thank you so much for giving us a little bit of your time on what I know is an incredibly busy day. Well, thank you for giving me a platform to share my thoughts. I really appreciate that. I caught up with Dr. Valerie Block and Dr. Riley Bove on the first day of the CMSC annual meeting, and we discussed how wearable devices and digital tools are finding their way into MS care and how those tools can actually improve the quality of care for people living with MS. In a moment, we'll hear that conversation.

14:29 Today at CMSC, Drs. Valerie Block and Riley Bove were part of a presentation on integrating wearable technology into MS clinical care. Dr. Block is a physical therapist and assistant professor of physical therapy at the UCSF Weill Institute for Neurosciences, and Dr. Beauvais is a practicing neurologist and clinician scientist at the UCSF Weill Institute for Neurosciences. You know, despite the massive amounts of money and development in digital tools, very few have actually crossed the divide into routine clinical care. So I'll ask each of you, what's the primary roadblock preventing a validated digital biomarker or wearable tool from becoming a standard part of an outpatient neurology visit?

15:15 Is it an interface problem, a billing issue, a workflow challenge, or something else? Dr. Block? Well, I think, for one, it's all of the above. And for two, it's that MS is so heterogeneous. So you have to find a tool that can pick up the differences for all different people with MS and their symptoms and problems, and maybe what's going to predict their disability going forward. Dr. Bove, same question. Also, all of the above. I think we know that different people with MS want to use different tools for different reasons.

15:55 And so there's a gap where we need something that can ingest all the different tools and give us the same information. On the clinician side, we need that information to get all the way through to the clinician's medical record, which is where they make the decisions. And that is a workflow issue, and it is a billing issue because that has to take up some part of the clinical visit. Dr. Bove, you've worked on the Bridge Precision Medicine dashboard to bring data directly to the point of care. Can this kind of a tool effectively display months of continuous step or sleep data to a neurologist in a way that's interpretable in what tends to be a relatively brief clinical visit.

16:43 That's absolutely our hope. We're in sort of the trials phase of this because you have to show it. But from sort of what we've seen so far, clinicians really appreciate being able to see trends over time, being able to see when a patient's function dips and discussing with the patient why that was so, and also measuring whether the interventions that they recommend happened and reached the target goal. Dr. Block, as a physical therapist and researcher, how does the clinical utility of this data differ between a neurology evaluation and a physical therapy or rehabilitation setting?

17:25 Well, I think what we're trying to do is change behavior more. And so using this information maybe as biofeedback or to have a goal, like an attainable goal for them to do, and then we have tools and treatment methods to reach those. And I think that having something that's actionable, like what Dr. Bovey's built with Bridge, and being able to pull that into the clinic, not only so I can see and I can act on that data, but also so the patient can see the data, and then that can help motivate them and help give them the feedback that they're actually doing better.

18:06 Because a lot of times I tell them you're doing better from when you first came in and they don't believe it because they don't see it because they've been incrementally changing and they haven't had that visual feedback. You're leading work on the wearables for the bladder study using external ultrasound devices. Bladder dysfunction impacts the majority of people with MS, but notoriously difficult to accurately track between appointments. What have you learned through this study about how real-time bladder monitoring changes patient self-management and pelvic floor physical therapy? So one of the things that I think both the clinician, the sort of urologist and myself and the rest of our team hadn't really realized, maybe we knew in the background was the variability and the fluctuation of symptoms for bladder symptoms.

19:02 And so what we measure in the clinic could be completely different from how they are during the rest of their day. So they're telling us that they're not voiding fully and yet we'll do a post-void residual or PVR and they fully void their bladder in the clinic. But, you know, I believe the patient. It's just that we don't have an objective measure, whereas with this, we can see that change throughout. You know, there's the potential for using it instead of having an indwelling catheter, maybe to have, to know when to use a catheter to void, to maybe avoid urinary tract infections or other things like that. And then one of the things that we've sort of started to see is patients who not just with voiding or post-void residual and retention, but also people who were trying to get to have less urgency and frequency and seeing how much urine is in their bladder and being able to sort of hold it just that little bit more.

20:00 Okay, one more ring up and then you can go to the restroom. And then seeing how that increases can really help motivate treatment and the patient as well. You know, as Dr. Block was explaining the variations between what happens or what's measured in the clinic and what happens in real life, it occurs to me, it's not just bladder function. I'm thinking about the patient that you might see at 9 a.m. And their 25-foot walk, and that same patient, same 25-foot walk at 4 p.m., or someone who is dealing with fatigue at home and doesn't happen to be fatigued the day they're in clinic.

20:40 It seems that wearables, digital technology, are really going to be able to start showing what it really is that that patient deals with day in, day out. Yeah, absolutely. You know, in the stroke world, we talk about the penumbra. So you have the stroke and you've had some tissue that has sort of lost oxygen and, you know, may be beyond repair. And then you have some tissue that may be at risk of losing oxygen, but that is still functioning. And that's sort of the penumbra around the shadow around the stroke territory. And I think in multiple sclerosis, just as you say, the ability to see that, huh, the walking is fatigable.

21:27 The bladder is variable. They do more early morning than they do late afternoon. All of that information tells us what domains, what function is actually at risk. What is the penumbra of their function? What is at risk of worsening or progression? And I think that's a really valuable biological signal that we don't have, as you say, when we see a patient for one time point. Well, I guess to that point, in addition to wearable sensors, your lab has looked at consumer-driven digital inputs like selfie videos from patients to measure their physical function. How do you see passive wearable data and active digital patient-reported outcomes working together to create a composite picture of that patient's true status?

22:14 I think, as you say, they have to work together. Passive means the patient isn't doing something. They're not responding to a prompt. They're not responding to an action. They're just living their daily life, and the wearable is measuring that. And that gives us a beautiful portrait, sort of longitudinal, but the sort of active prompts that we're using when we ask patients to self-record their selfies actually gives us a really nice sort of more spot, you know, one moment in time or over several days, several moments of time where we really see how they're really functioning in their daily world, doing things that matter to them, buttoning their shirt, feeding themselves, walking in their home.

22:58 And so I think those do provide really complementary information. If you want to follow people over the really long term and get a lot of information, passive is going to be much better because you can't ask people to do burdensome things all the time. But the, you know, a low burden task that you ask them to do several every few months, for instance, is totally feasible. You know, today's presentation was largely about taking a lot of the data collection we're talking about and putting it into the clinic. Now, a major promise of wearables, as Dr. Block just pointed out, is their ability to detect changes that a patient might not even notice or mention during their visit.

23:42 When a wearable dashboard flags a sudden drop in average daily step count or a significant disruption in their sleep pattern, what's the protocol for the clinical team? How do you prevent that data from creating alarm fatigue for both the clinician and the patient? Yeah, that's a great question, and that is really a workflow question. And the ideal situation would be that the clinician and the patient together decide on the alarms. So if someone is sort of feeling low-grade, you know, a little sad all the time, they don't want their doctor alerted every day, right?

24:25 They want to decide what would constitute something that for them is substantially different. And I think being able to select the alarm thresholds and triggers is actually really key to reducing alarm fatigue long term. And then being able to troubleshoot, hey, you know, we are doing this and we've sort of, you know, you've gotten better. Now let's change the alarm, right, to more restrictive or more permissive, right? Let's kind of evolve as the function and the data evolve. I think it's going to be a key component because you're right. We can't have alarms all day.

25:06 Dr. Block, patients can feel excited and motivated when they see their own data, but over time that engagement can taper off. What have you found to be the most effective way to keep patients actively involved with their wearable devices once the novelty starts to wear off? That's a great question. And I think there's not an easy answer to that. But with studies and in clinical care, I think it is person to person interaction. I think they need to feel kind of some ownership of it. And as Dr. Bovey talked about, like designing a tool that they find interesting, that they get something back from, that they can see these changes.

25:50 And then I think interaction with the provider that they're seeing you, that they're hearing you, that they're understanding some of the things that maybe have been difficult to show or elicit in the clinic, that they're able to see that and track that and that they are responding to that in a way that, you know, we can hopefully see changes. Dr. Bove, consumer digital devices are created for the mass market for most people. MS presents with a variety of symptoms, including cognitive fatigue, manual dexterity challenges, and visual impairments. So how do we apply human-centered design to ensure these tools remain accessible to patients who might have the highest degree of disability and the most to gain from this kind of remote monitoring? Yeah.

26:40 You can imagine that someone who has disability across several domains would end up wearing like 16 different devices, right, that need to be paid for, charged, calibrated, interpreted. And that would be overload for that person. That's not serving the needs of that person. So I think, again, the combination of, you know, what is low touch, low burden gives you a good snapshot. And then what do you want to monitor? And it can be for the time being, right? So maybe for the time being, we want to focus on one domain, on, you know, getting the person to move around a bit more. And once we sort of achieve that goal, maybe we pull in or switch out a new device, right?

27:25 So it doesn't have to be all at the same time forever. I think you can really be a little bit more selective based on what you're prioritizing. Because we see, for people who have difficulty in multiple domains, if you send them out with your long list of all the things they have to do to tackle all their symptoms, it's going to be overwhelming, right? And so part of the care plan and part of the shared decision-making is figuring out, what do we do first and then what do we do next? And so I think, similarly, the devices can follow that decision-making as well. Well, Dr. Riley Bove, Dr. Valerie Block, it's not often that I find myself surrounded by so much expertise, but I want to thank you both for all you do to improve the lives of people living with MS. And thanks so much for talking with me today.

28:10 Thank you, Jon. Thank you, Jon. That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered by the National MS Society. And you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at realtalkms.com slash 457. You'll find that link in today's show notes so you can easily copy and paste it right into an email or a text. Next week, we're continuing our coverage of the Consortium of MS Center's annual meeting by sharing my conversation with Dr. Stephen Krieger. And if you're someone affected by MS, or if you're an MS researcher or clinician, I can promise you that this is a conversation you won't want to miss.

28:57 I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.