#1342 Community Spotlight: T1D Exchange

October 26, 2024Scott Benner

Talking about places and people who help.

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Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

I'm always hearing stories about people and entities that are out there in the world doing great stuff for people living with diabetes. Today, in this short episode, I'll spotlight one of them. Perhaps their efforts can help you. Maybe they're happening near you, or maybe it's something you'd like to get involved in one way or the other. We're gonna throw a light onto all the good work that's being done out there. I hope you enjoy hearing about it, and I hope that it helps to lift you up and make you feel you know, like you're not alone. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group. Juice box podcast, type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast, type one diabetes on Facebook you I'm

going to start today with the T 1d exchange. This is probably something you hear about in the bumpers of every episode that you listen to, but the T 1d exchange is a non profit organization that's focused on improving the lives of people with type one diabetes through research. Right? They are involved in how do I explain to you what they do? You go to T 1d exchange.org/juicebox, and you join their registry and fill out a survey. That's all you do. This whole process might take you 10 minutes. They take your answers right and then they I don't know how to it's data. Then when I don't know companies or when institutions or anybody who's doing research for diabetes, when they need data to make sense of you know, what's important or what they need to do. Like, I'm obviously not the right one to tell you about this, but, but I'll read you a couple of things in a second. But my point is, is that they need to know from huge swaths of people the answers to these questions. It actually helps research move forward. It actually helps things get done, like CGM, for example. So you give up about 10 minutes of your life. You do it from your house, you do it from your tablet or, you know, your computer or your phone. You could probably do it while you're, you know, sitting on the sofa. This is not like a heavy lift, is my point, right? The answers to your questions are not things you're gonna have to think about. They're gonna ask you questions about diabetes that you know the answers to. They're looking for caregivers, of people with type one and adults living with type one. They need you to be a US resident, but that's pretty much the only couple of things you need to be they would love it if more men would do it. More people of color would get involved. But they're looking for everybody caregivers, type ones to jump on, join the registry, take the survey and help. Super simple. I hope you do it. But here's a couple of things, T 1d exchange supports numerous advancements in type one diabetes research, care and technology focusing on improving patient outcomes and quality of life. They do patient and clinical registries, right? So the T, 1d exchanges, large scale patient and clinical registries have gathered invaluable data on various aspects of living with type one diabetes. These registries have been essential in identifying trends and challenges in type one diabetes management, from glycemic control patterns to health care disparities. They use real world evidence to help with these things, right? So their data has been in instrumental in evaluating the use, adoption and effectiveness and effectiveness of diabetes devices like continuous glucose monitors and insulin pumps. This information has helped drive innovation in diabetes tech, making devices more user friendly and effective. So this is my point. You go answer a few questions, and I don't know, two years from now, you get a better device that's a big deal like it really is. They need your answers to these simple questions. It is genuinely a situation that is just, it's no skin off your ass. You know what I mean? Like, you are not going to be put out by answering these, these questions or joining the registry. Jump on, sign up, answer the questions. They actually send out follow ups once a year to continue. You know, they don't bug you. They're actually really good about that. And sometimes there's opportunities for you to be involved in other stuff. You. Get an email and be like, Oh, maybe I will do this. Like, I've known people who have been in CGM studies, for example, listeners to the podcast and actually got paid a little something to do it, and had this experience and were able to help more. But if you just want to help from your couch, that's absolutely crazy good too. Let's see, during COVID 19, telemedicine research was done the T 1d exchange supported research on the effectiveness of telemedicine in diabetes care. This has highlighted the benefits of remote care for people with type one diabetes, which has been essential in advocating for the long term integration of telehealth and diabetes management. That's another thing that the T 1d exchange did. They published significant findings on disparities in diabetes care and outcomes, particularly around racial and socio economic factors that impact access to technology and glycemic control. Their research has informed initiatives aimed at improving access to care and technology for underrepresented groups. Let's talk about insulin affordability. T 1d exchange has been a leading voice and understanding and addressing insulin affordability challenges through surveys and data collection, they have provided insights into the financial burden of insulin cost, which has fueled advocacy efforts for better pricing regulations and support systems. What else? They've conducted research on glycemic management in children and adolescents with type one diabetes, emphasizing the need for age specific strategies and the importance of early and consistent use of diabetes technology for better outcomes. I can go on and on if you want, but T 1d exchange.org/juicebox, go there. Join the registry, fill out the survey. If a look, you guys. Don't know how many people listen, but it's a lot more than you think. If 1000 of you just did this today, that registry would be that much more rich and valuable. It would just be fuller of good information. It would be fuller of ideas waiting to be mined by researchers, waiting to help you. It's, I mean, how often do you get to do something that helps other people, that will actually help you or your family as well? All right, couple more things, let's see the organization's quality improvement. Collaborative engages over 50 clinics improving care standards through shared data and evidence based best practices. They focused on disparities in care, showing that CGM users generally have better glycemic control than those using self monitoring methods, which has implications for device adoption and access advocacy. Oh, look at this. The T 1d exchange has been at the forefront of studying off label GLP one use among people with type one diabetes, particularly its relationship to cardiovascular help, despite glps recognized benefits in type two, its role in type one is less understood, and this research is helping establish new care pathways for patients with type one who may benefit from GLP one therapies. So this is something that could end up helping you down the line in I mean, imagine, imagine that they help prove that GLP ones have significant impacts for cardiovascular health, for type ones and 40 or 50 years from now, not to be too heavy handed, but you don't have a heart attack because of something that got figured out today, because you signed up for the registry and filled out the questionnaire like that's helping, right in ways that you almost can't imagine. T, 1d exchange.org/juicebox, is there more here? Let's see. All right, I'll wrap it up with this. T, 1d exchange, collaborative program with over 50 us clinics works to improve care through real world data sharing, the program has enhanced best practices across type one diabetes care, allowing clinics to identify and act on areas needing improvement, which has scaled successful practices across participating clinics. They provided data showing that continuous glucose monitors generally achieve better glycemic control and fewer severe hypoglycemic events compared to those using traditional monitoring. This research supports advocacy for broader CGM access across the more diverse patient demographic they investigated, like we said, GLP one finding that the findings indicate limited use of GLP one, despite potential benefits for patients with obesity and cardiovascular conditions, paving the way for additional research on the effectiveness for it with type one management. I'm telling you you want that research done so you've been listening to this for nine minutes, just 10 more minutes, and it's over, and you've done something awesome. T 1d, exchange.org/juicebox, I'm going to put the link in the show notes right at the top, you can click on it and fill it out. They'll know you came from me, which helps support the show. But that's not why I'm telling you about this. I've been telling you guys about the T 1d exchange for a long, long time, years and years and years, because this is a simple and effective way for you to help with type one diabetes research, and you don't need to leave your. House. I hope you do it. Do it now. Don't wait. T 1d exchange.org/juicebox, now the music's going to play, and if you're interested in hearing about the juice cruise and some other stuff we have going on, you can listen for another couple seconds. But this is pretty much the end. I'm going to keep coming back and doing this. I need a name for this, if it's like community highlight, or, you know, spotlight, or something like that, but, but I like this, we're going to do more and more. And actually, there is, I started a Facebook post about this, and people are just piling in organizations and other people who have been doing great stuff for people with type one so I'm gonna have no shortage of great works to tell you about in these short episodes. So look forward to another one next week.

If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective the bowl beginning series from the Juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu.

I was looking for a way that we could all get nice and tan and meet each other and spend some time talking about diabetes. How are we going to do that on a juice cruise, juice cruise 2025 departs Galveston, Texas on Monday, June, 23 2025 it's a five night trip through the Western Caribbean, visiting, of course, Galveston, Costa, Maya and cosmel, I'm going to be there. Erica is going to be there, and we're working on some other special guests. Now. Why do we need to be there? Because during the days at sea, we're going to be holding conferences, you can get involved in these talks around type one diabetes, and they're going to be Q and A's plenty of time for everyone to get to talk, ask their questions and get their questions answered. So if you're looking for a nice adult or family vacation, you want to meet your favorite podcast host, but you can't figure out where Jason Bateman lives, so you'll settle for me. If you want to talk about diabetes, or you know what, maybe you want to meet some people living with type one, or just get a tan with a bunch of cool people. You can do that on juice cruise 2025. Space is limited. Head now to Juicebox podcast.com and click on that banner, you can find out all about the different cabins that are available to you. And register today. Links the show notes. Links at Juicebox podcast.com I hope to see you on board. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. You.