Wearables and CMT: Data That Makes a Difference

Patients are driving the future of Charcot-Marie-Tooth (CMT) research, and you can be part of the change! In this episode of CMT Simplified, we dive into how wearable technology, like BioSensics devices, is empowering patients to participate in clinical trials from the comfort of their homes. Learn how your everyday experiences can provide researchers with the critical data needed to develop better treatments and improve the quality of life for the entire CMT community.

Your voice and participation matter—tune in to discover how you can shape the future of CMT care!

*HNF is now recruiting patients to participate in the Wearable Study in Nashville, TN at our annual Clinical Trial Readiness Summit on April 24-26th.

***Click here to sign up and be notified when registration opens!

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Transcript

 Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease (CMT). With episodes ranging from 10-20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments, and scientific discoveries shaping the future of CMT.  

Perfect for busy listeners, *CMT Simplified* is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered, and up-to-date—one short episode at a time! 

 Hey everyone. Ready for today's CMT Simplified. Let's do it. Awesome. Today we're tackling some really incredible research, uh, using wearable tech to like totally change clinical trials, uh, for Charcot Marie Tooth disease. CMT. Yeah. CMT. Yeah. You know, what's so cool about all this is that it's like, Taking something that, well, a lot of us use every day, like a Fitbit or an Apple Watch, you know, and, and using it for, for medical research and in a way that could really make a difference for people.

Exactly. And it's not even just about.  Collecting the data, right? It's about actually understanding how CMT affects people like in their everyday lives. Exactly. So before we get too far ahead of ourselves, I kind of want to set the stage here. Okay. Like imagine, right, a future where critical trials, you know, they're easier for people to participate in.

Yeah. They give researchers more reliable information. And ultimately help us develop better treatments. Yes. That's exactly what the Hereditary Neuropathy Foundation or HNF. HNF. Yeah, HNF is, is working towards with, uh, with their latest research. And, and this is a really big deal, right? Because CMT is a genetic disorder that affects your peripheral nerves.

Um, and these are the nerves that basically carry signals from your brain and spinal cord out to your muscles and, uh, sensory organs. And, and it can cause all sorts of problems like, uh, weakness, uh, sensory loss, you know, problems with balance, uh, even frequent falls, you know, everyday things like, like buttoning your shirt or, or walking up the stairs can become incredibly challenging.

Yeah, that sounds, that sounds really difficult. Yeah. And I, I know traditional clinical trials for CMT, um, haven't always been easy for patients. Right, having to travel to research centers sometimes really far away, that's, that's a huge burden for people. And those traditional assessments, you know, I mean, I imagine they don't always capture the full picture of how someone's actually functioning.

You're exactly right. Like in their daily life. They, they don't. So, so tell me more about like where does this new research fit in? Well, this is where it gets really exciting. So HNF has been a real champion for the CMT community for years now. I've heard of that, yeah. And they have this amazing resource called the Global Registry for Inherited Neuropathies.

Wow, that's a mouthful. Yeah, Grin for short. Um. And it's this massive database of information from CMT patients all over the world, right? And this registry has been so valuable for researchers. So like, what kind of information does it have? Oh, it's got everything. Different types of CMT, how the disease progresses, uh, what factors might influence its severity, you name it.

So it's like this gold mine of information that helps researchers like  Design better clinical trials, recruit the right participants, and just like understand the disease in a much deeper way. That's exactly right. And that's not all. HNF has also been learning from past clinical trials, figuring out, you know, how to make them more efficient and patient friendly.

Okay. This new pilot study that they've launched with a company called Biosensics is a perfect example of that. 

They're using these really cool  basically a small, lightweight pendant  that patients can 

wear. Bye Oh, wow. Yeah. Okay, so  tell me more about this, 

sure. They're packed with all these tiny sensors like accelerometers and gyroscopes that, that continuously monitor the, the wearer's movements and activity levels, you know, as they go about their day. Wow. So it's like,  Uh, a super high tech fitness tracker, but, but specifically designed for CMT research.

Exactly. And the data it collects, it goes way beyond just counting steps, right? Yeah. It can track things like, like gait, um, balance, even, even really subtle changes in movement patterns that might be missed by those traditional clinical assessments. 

That's fascinating. So instead of relying on like those occasional clinic visits, researchers are getting this like constant stream of data from these devices.

You got it. Like a window into the patient's daily life. Exactly. And the initial results of this pilot study, they're super promising. That's awesome. Yeah. So, tell me more. Like, what have they found so far? Well, Dr. Kayla Cornett, who, uh, who led the study, she found that participants, well, they loved how easy the device was to use.

Okay. It's, it's non invasive. Uh, the battery lasts a really long time and people were, they were happy to wear it, which led to really high compliance rates, much higher than what you typically see in, in clinical trials. That's amazing. Like, so high compliance, that's, that's great, but, but did the, the data actually provide like.

Any valuable insights? Oh, absolutely. And this is where it gets really interesting. Okay. So, they got this incredibly detailed view of how much activity patients were actually doing in their daily lives, which is, is crucial for understanding the true impact of CMT and how it affects people's quality of life.

So they're not just collecting numbers. They're getting insights into how CMT is actually affecting people's lives. Exactly. And, and one of the most exciting things is that the data from the wearable sensors, it actually lined up really well with those, uh, traditional clinical measures of, of disease severity.

Wait, so you're telling me that these tiny sensors in this, in this pendant, they're giving results comparable to those complex and, and often really time consuming assessments, um, you know, the, those ones that are done in a clinic. Yeah, they found a really strong correlation. Wow. So, so that means they're getting consistent results, which gives them more confidence in the accuracy and the reliability of this wearable technology.

This feels like, like a huge turning point for CMT research. It really does. More accessible trials. Richard data and ultimately better treatments for for CMT. Wow. Okay. So what's next for for this research? Well, I know that HNF is planning to enroll another group of participants including kids as young as eight at their next summit in Nashville Oh, that's great.

Speaking of the the summit. Yeah. How does that like tie into all the research they're doing? Well, that summit is a fantastic opportunity to recruit new participants for the study and to build a strong sense of community among people with CMT and their families. And it's, it's not just about the research, right?

It's, it's a chance for, you know, the, the whole CMT community to connect with each other, to learn from experts and to share their own experiences. I saw they have a whole day dedicated to, uh, A CMT patient retreat with some really cool workshops and sessions. Yeah. Uh, what, what stood out to you on, on that agenda?

Honestly, I mean,  the variety is just, it's really impressive. You know, they're addressing the, the physical aspects of, of CMT, like, like pain and, and fatigue management and adaptive fitness. But they're also, you know, addressing the emotional and social aspects. Yeah. With, with sessions on, on mental health, uh, self love.

Yeah. They even have CMT speed friending. Wait, speed friending for, for people with CMT? Yeah. That's, that's brilliant. It's, it's a really cool idea. It's like, it creates this, this, this. This safe and supportive space for people to like connect with others who truly get it, you know, right, who understand what they're going through and and it, it helps reduce that feeling of isolation that so many people with, with chronic illnesses experienced and, and they didn't stop there.

They have sessions on nutrition for, for daily living, bracing options, mobility. Uh, gadget demos,  which I mean, that's, that's super practical, right? And then they dive into topics like, like parenting and caregiving, uh, service and, and therapy dogs, inclusive employment and  financial planning. Even adaptive fashion and travel.

That's incredible.  This, this retreat is really like a testament to, to HNF's dedication to, to, to empowering people with CMT to like live full and meaningful lives. I completely agree. It's not just about, you know, finding, finding treatments, right? It's about, Like, improving their, their quality of life right now.

Exactly. And, and that kind of brings us back to the research with the, the wearable technology. Absolutely. By, by capturing data on how people are actually functioning in, in their everyday lives. Right. Researchers can, can develop therapies that, that directly address those challenges. And, and make a real difference in, in people's homes and, and communities.

Exactly. That's the goal. It's like, like Dr. Cornett said. Yeah. Understanding the impact of CMT in patients daily lives is crucial. So that future therapeutics can benefit individuals in their home environment. I, I love that quote. It really captures the essence of this research. It's about, like, shifting the focus.

Yeah. From, from managing symptoms in, in a clinical setting. Right. To, to truly improving people's lives in, in the real world. I couldn't have said it better myself. And technology is playing a huge role in making that happen. It really is. Wearable tech, you know, digital health platforms, even, even things like telehealth.

Mm hmm. They're breaking down barriers and opening up, like, all these new possibilities for, for CMT research diagnosis and, and treatment. It's a perfect example of how. How technology can be a force for good in health care, you know, empowering both patients and researchers to work together towards a common goal.

Okay, so what what does this all mean for the future of of CMT clinical trials? Well, I think we can definitely expect to see more studies incorporating. Uh, wearable technology, like, like the PAMC's device, it's, it's just so much more efficient and patient friendly than, than those traditional methods, not to mention the wealth of, of data that it can capture.

And, and that means we can potentially get new treatments to, to patients faster. Exactly. And, and, uh, With the continuous data from, from wearables, researchers can, can track progress more accurately, and, and even make adjustments to treatments, you know, as needed. It's, it's a much more personalized approach.

You know, this is why I love doing these deep dives. We get to explore the cutting edge of, of medical research. Yeah. And see how, how innovation is, is changing lives. And it's not just about the science, right? Right. It's about the, the human impact. HNF's work is, is a powerful reminder that, that research is.

It's about more than just data points. It's about improving the lives of, of real people. Absolutely. They're not just, you know, conducting research. Yeah. They're, they're building a community. Mm hmm. Advocating for, for patients. Yeah. And pushing the boundaries of, of what's possible for, for people with CMT.

This has been a really fun deep dive. It has. Thanks for joining us today. Yes. Thanks everyone. We hope you found it informative and inspiring. And until next time, keep exploring, keep learning, and keep pushing the boundaries of what's possible.

We'll see you next time 

Thank you for listening to CMT simplified. To learn more about HNF, the wearable study and 2025 summit, visit hnf dash cure.org. Join CMT families around the world creating impact that matters.