Researchers help families at risk of autoimmune diseases

PLEDGE study aims to predict risk of developing celiac disease, type 1 diabetes

Three people wear face masks and sit at a table, talking into microphones.

Episode Transcript

Courtney Collen (Host):

Hello, welcome to Her Kind of Healthy, a health podcast series brought to you by Sanford Health. I’m your host, Courtney Collen with Sanford Health News. This series is starting brand new, honest conversations about self-care, healthy living and so much more today. We’re talking about the new PLEDGE study through Sanford Research, which is a really unique opportunity to identify and predict which children may be at risk of developing autoimmune diseases, like type 1 diabetes and celiac disease. Dr. Kurt Griffin, a pediatric endocrinologist, is leading the PLEDGE study. We also have Dr. Laura Whittington, a pediatrician with Sanford Children’s.

Let’s talk about these two diseases and children. Talk about maybe some of the challenges that families who have children diagnosed with celiac or type 1 diabetes might face.

Dr. Laura Whittington:

Children are at about – we see about half of a percent of the population who will develop type 1 diabetes. Kids with type 1 diabetes, they go through a lot. It’s a lot to have to monitor blood sugars. It’s a lot to have to memorize, to know how much I need to bolus. If I eat a certain food, it’s a lot of education. And so that’s a lot to deal with for all of these families, as far as celiac disease. I mean also huge for education on that. Being on a gluten-free diet for the general population, they can certainly go on a gluten-free diet, but it’s not going to help them necessarily for kids who have celiac, they have to have a gluten-free diet. If they don’t, oftentimes we will see issues with how they’re growing. They’re going to have issues with abdominal pain, maybe diarrhea, vomiting.

Courtney Collen (Host):

Dr. Griffin, I want to bring you back in what does it cost to participate?

Dr. Kurt Griffin:

So because it is research, there is no cost. This is something that Sanford is contributing to significantly and providing a lot of services in kind. We’re also very fortunate that the Helmsley Charitable Trust has also been supporting this and is helping support some of the financial side of that.

Courtney Collen (Host):

So a child under six comes in with their parent or guardian, gets a finger prick. When did the results come back and how are those presented?

Dr. Kurt Griffin:

So the results come back kind of like any other result. So they need to be signed up for the, my chart, which is how they can also communicate with the clinic. And once the family has that any lab results that they get and, you know, they come in and if they’re getting a lead level at the same time, for example, that’ll show up on their chart and this shows up just the same way. And the nice thing is almost everybody we test is going to be negative. And we’re looking for those rare people that then we will follow up. And when that comes back, there’s a message at the bottom of the page that says, if there is a positive antibody, we will contact you in the, my coordinators on the research side, we’ll reach out to them in short order. And then we’ll set up, how do we follow with this?

You know, because seeing that positive antibody, you know, probably means you’re at least at some higher risk of getting that child is at higher risk of getting type 1 diabetes. We don’t want to just say, okay, go home and worry about this. We want to say, all right, let’s first of all, let’s double check this, be sure it’s real. And then that’ll help us decide how often do we want to monitor? And we really that’s going to be the one thing we can promise comes to this is if we monitor closely enough, we can prevent them from getting really sick when they come in. And really at this point, particularly on kids, the majority of them, when they’re diagnosed, they come in sick enough during intensive care for awhile. That’s one thing I know we can prevent almost completely. There may be some that sneak through, but we can do well with that. Beyond that, that’s where again, moves back more on the research side. I put my research side up and, you know, that’s where there’s some things we’re trying that are starting to show some promise. We can slow it down. Eventually, yes, our goal is to prevent it. You know, pediatrics is preventative medicine specialty, and you know, that’s, that’s the attitude we want to take with type 1 diabetes.

Courtney Collen (Host):

So having this information when kids are young is so valuable, isn’t it?

Dr. Kurt Griffin:

I think so. The reality is even if we can’t change what happens, we can at least catch it before he gets really severely sick. And yet there will be more things that we can do.

Dr. Laura Whittington:

I agree. It’s invaluable to know who is at higher risk. That way we can kind of help them monitor closely and they don’t end up in the hospital, hopefully.

Courtney Collen (Host):

Yeah. You know, expecting moms or moms of young children are so busy planning all the time, planning ahead, or if they’re pregnant planning for baby, why would this be an important screening to add to their list when it comes to the health care for their children?

Dr. Laura Whittington:

I think all families are going to want to know if their child is going to be at risk for really any disease. And so knowing if they’re at a high risk for type 1 diabetes, I think should be also on everyone’s list. It’s very easy. We make the process very easy when they come into clinic. If the family is interested in the study and they are signed up for My Chart, we can get everything done that day. And that way busy families don’t have to come back to clinic. We have them sign up through My Chart. So they do have to pull up My Chart or we can pull it up on our computer and have them sign into their account. And it’s a very quick process to go through the consent. As soon as we have the consent process done, the labs are ordered and they can stop at lab on their way out of clinic.

Courtney Collen (Host):

Dr. Griffin, why did you decide to lead this study?

Dr. Kurt Griffin:

So I’m a pediatric endocrinologist. So I wound up spending a lot of time with the families and the children that have type 1 diabetes and working with them, you know, to manage that disease. You know, it’s a disease that you can’t take a break from. If you take, for example, somebody with high blood pressure, if they stop taking their medicine for a week, probably not the smart thing to do, but it also probably isn’t actually going to kill them that week. Whereas if one of my kids stops taking insulin, that is going to be a big problem. And being off on how many carbs you’re counting for that meal means your blood sugar is going to be off because your insulin dose is off. And it’s something that you can never kind of take a break from. And as you know, we’re treating with insulin.

We’re replacing what the body can’t make, which I think is already in some ways a very elegant approach, but it doesn’t take care of the underlying autoimmunity. And that’s what really drives me. I’ve been working on clinical trials for immune modulation. How do we take people that have just been diagnosed? And there’s some drugs that have been used, particularly rheumatoid arthritis that tend to work pretty well there that we’ve been trying to use in diabetes without a lot of great success. The idea of moving this earlier and catching kids before their immune system is that aggressively attacking while they still have more of their beta cells making insulin. That’s something that we’ve for years been saying is what we need to do because it’s going to be easier. And it’s just about a year ago that a trial nets trial of a drug for kids that didn’t have full-on diabetes yet actually showed us, yes, that’s right. So how do we move this earlier and earlier where we can also probably use it more gentle, safer, more targeted approaches? That’s what really drives me because, you know, taking care of the families and the children with type 1 diabetes, you know, we can do that. I would be much happier if I could stop kids from getting to where they need that.

Courtney Collen (Host):

How proud are you to see Sanford providing this opportunity to families?

Dr. Kurt Griffin:

I have to say, it does make me proud of the organization that it’s willing to commit so many resources and so much effort to this. And there’s a lot of effort on the back end that’s hidden from view. We’ve talked about how easy we’re trying to make it from everybody from, you know, the kids giving the sample, to the family signing up, to the providers and the clinic staff, all that has taken tremendous lifting from the it side of things on the, how do we make it so that we can make this streamlined. And we’re actually using Epic and the, My Chart and messaging in a way that nobody has done before. So there’s been a lot of invention and a lot of engineering to make it happen. That is really impressive. Further, Sanford has made a commitment to type 1 diabetes. This I think is where we’re going to get the biggest payoff. And certainly if we can actually show that, not only can we do this, but we can do it in a cost-effective way so that eventually it does become standard of care. This will be an impact potentially for every child, not just here, not just in our system, eventually every child. That’s humbling.

Courtney Collen (Host):

Yeah. I can imagine. Is there anything else Dr. Whittington or Dr. Griffin that you want families to know who at home might be listening in to learn more about this PLEDGE study? What do you want them to know about enrolling their children and getting involved in advancing this research?

Dr. Laura Whittington:

I would recommend any family or any parent who has questions or concerns. They can certainly reach out to our clinic. They can talk to their primary pediatrician and get more information. If they’re interested, we can certainly send them a My Chart message or have the research team, send them a My Chart message. So they get more information.

Dr. Kurt Griffin:

Part of any research project is we have to ensure that people understand what they’re signing up for and that, you know, it always, you know, one of those things from the review board is we always have to make sure that all their questions are answered. So if they have questions, we really do want to talk to them ahead of time, get those squared away, and then help them to make an informed decision about this.

Courtney Collen (Host):

Well, thank you both so much for being here. I look forward to learning more about how the PLEDGE study will advance research in auto-immune diseases, especially as it relates to our children. We appreciate your time.

Dr. Kurt Griffin:

Thank you.

Dr. Laura Whittington:

Thank you.

Courtney Collen (Host):

Stay well. Have a great day.

Posted In Children's, Research

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