The Helmsley Trust and Type 1 Diabetes
Anne L. Peters, MD, CDE: Hi. I am Dr. Anne Peters, Director of the Clinical Diabetes Programs at the University of Southern California. I am in San Diego for the annual meeting of the American Diabetes Association, and I invited Marie Schiller, working with the Helmsley Trust, to talk with me about the Helmsley Trust and what they are doing for people with type 1 diabetes. Welcome, Marie.
Marie K. Schiller: Thanks, Anne.
Dr. Peters: I have been working with the Helmsley Trust for a while, and I invited you here to tell everyone else what the Trust is doing for people with type 1 diabetes and some of the new things that are going to come out in the future.
Dr. Schiller: Good. The Trust's diabetes program has 4 components and is explicitly focused on type 1 and not more broadly on type 2 diabetes, although some of their programs obviously have some utility beyond type 1.
The program has 4 components. The first is a basic research component, in which a consortium of 21 centers works together, and that's a combination of immunology and beta cell regeneration programs. It's very early research working at the molecular and genetic levels.
The second part of their program is on the artificial pancreas and continuous glucose monitoring, which is looking at improvement of the devices that we have for monitoring. The majority of that work is in partnership with the Juvenile Diabetes Research Foundation. With a grant to fund and build out the core group, it has been a wonderful collaboration working back and forth and really driving those programs forward.
The third component is outreach. In the outreach program a number of programs are ongoing within type 1 diabetes to look at the pediatric population and education and investing in some of the camp programs. You are familiar with the translational program, in which they are looking at that tough transition between pediatric oversight and moving into the adult realm.
The fourth component is what they would call "accelerators" to enable better research and better care across the board. Dana Ball, who is the director of the diabetes program, had done extensive research with David Panzirer, the trustee at the Trust. One of the components they kept coming back to is the infrastructure that we need to deliver care once we develop and push forward some of these innovations.
At the very beginning, they identified the need for better information on the disease. I can remember Dana saying to me, "Marie, I can't sit in one more meeting where someone says, 'I don't understand type 1 diabetes,'" and part of that is getting a group of patients together. Hence, the evolution of the type 1 diabetes (T1D) exchange program.
The T1D Exchange
Dr. Peters: I would like you to talk a little bit about that exchange. It's something that personally I have been involved in and just love because it's the first time we have ever gotten together a whole group of people, an ever growing group of people, with type 1 diabetes. We are finally able to ask and answer some of the questions we have never really had the answers to. So please talk a bit about it and then what was presented at these meetings in terms of the findings from that exchange.
Dr. Schiller: Yes, let me start back when Dana and David had this vision of the registry, and I worked closely with them. We went out, and instead of starting with a traditional registry where it was all driven by clinicians and coordinators entering information, we said, "let's make sure that that is the best model to be going out with." We saw the evolution of Health 2.0 and the involvement of patients, and we said, "let's just look and see what that model should be," and it expanded beyond that.
The T1D exchange has 3 components. The Trust is funding a 3-year, $26 million grant that is being executed by the Jaeb Center for Health Research under Dr. Roy Beck in Tampa, Florida. One component is the clinic-based registry, and the second component is the bio-repository in which we will be able to link the metabolic information with the clinical profiles and the phenotypic information and genetic information, ultimately.
The third component is a patient portal. This is, for the first time, all the data that the clinicians have been so wanting to get their hands on and the history behind it. I have had type 1 diabetes for 30 years and will be able to look back at my A1c graphs and compare them to other people in the community. It's going to be an immensely helpful tool. Those are the 3 components.
We started with the clinic registry. You alluded to the data that were presented at the meeting here. Roughly 70 centers are part of the T1D exchange network. In September, not quite a year ago, Dr. Beck started enrollment and we just hit about 12,500 patients now in that registry -- people of all ages with type 1 diabetes, a mix of pediatric and adult patients with different lengths of disease, some with complications, some without complications. We revealed some of the data at the meeting.
Dr. Peters: The data seem kind of basic but, ironically, these are data that we have never had before. Basically, they show the relationship between testing blood glucose levels and the A1c. Frankly, I have spent a lot of time writing prior authorizations to get people enough strips to test their blood glucose often enough. The registry data clearly show the relationship that testing more really does make a difference in terms of outcomes, based on A1c levels in patients with type 1 diabetes.
Dr. Schiller: It does, and that's the abstract that was presented at the meeting. You can look at the data that have been collected. The sample size wasn't quite 12,500 at that point, maybe around 5000, but for all ages you can look at the direct correlation between the frequency of blood glucose testing and A1c level. As you said, we all know this, but when we try to go out and look for publications, they don't exist.
Or what happens is that in clinical trials, you start to get an artificial environment. In your placebo arm, you start getting people testing all the time but they weren't traditionally heavy testers, so you start to get artifacts that come out of those studies that can bias the data. This was the first time that we just retrospectively looked at what happens. No one feels as if they are under the eyes of someone watching them, so it's as pure as you can get trying to remove that bias. Sure enough, it's right there, and you can see it.
Sticking Together: GLU
Dr. Peters: The last thing I want you to discuss is GLU. What is GLU? For those of you who haven't heard of it (probably most of you who are listening) GLU is going to be a patient portal that clinicians can tell their patients with type I diabetes about, where they can go to start becoming involved in the type 1 diabetes community. Why don't you discuss it a little?
Dr. Schiller: We are paving new ground here with the GLU Website. Historically a wealth of knowledge comes out of registries, the few that are out there. We have already started to see that with the clinicians, but the goal of the exchange, the mission, is to improve outcomes not just through better research but through better care.
Because diabetes -- type 1 diabetes in particular -- is an every-day battle, we need to do this in a way that we can start extending the tools outside of the clinician's office where I see my physician 30 minutes once every 3 months. It's not enough when I'm trying to figure out what to do in various situations.
We wanted to bring some of those components directly to people with type 1 diabetes through a social networking type of environment. The benefit of this is that at the same time we are providing this outlet for people with type 1 diabetes to come together and share information; we are learning more and more about the disease. I forget the exact quotes as we were doing our research, but only about 20% of the information we really need to know about people with type 1 diabetes lives inside the records in a clinician's office. This will be the first time that we will be able to capture that life outside and be able to put it together, at the same time providing a resource for people with type 1 diabetes.
It's unbelievable; I don't know if you hear this from your patients with type 1 diabetes, but we have met so many people along the path who say, "I've never met anybody else with type 1 diabetes." It's hard to believe because we are in the network and we see all of them. You see the individual patients who you are managing, but these patients don't know anybody. They say, "how did you learn that and who are you connecting with?"
The number one thing people want to do is to connect, so GLU is a Facebook for people with type 1 diabetes. They are going to be able to come together and really learn from each other while, at the same time, we as the research community are learning more about the disease.
Dr. Peters: When will GLU launch, and how will people be able to access it?
Dr. Schiller: We are in alpha testing right now with the site. We are building this from scratch and have the philosophy of bringing the community in with us -- the clinicians as well as the researchers and the people living with the disease. Right now, launch is scheduled for late fall, either late October or the beginning of November.
If you are interested in being on that first-call list as we go out, there is a site that you can go to and preregister and give us your contact information. It's www.myglu.org. You can go in and give us your email and we will keep you posted on when the information is going to be available. We are starting with our clinics in the United States but this is an international effort. We are looking in phase 2 to expand the clinic network outside the United States and certainly welcome bringing in the entire community on a global basis.
Dr. Peters: That is absolutely wonderful. I'm just so thrilled with what you all are doing to help people with type 1 diabetes.
Thanks for joining us today, Marie. This has been Dr. Anne Peters reporting from the American Diabetes Association meetings in San Diego, for Medscape. Thank you.
Medscape Diabetes © 2011
Cite this: Anne L. Peters, Marie K. Schiller. Building a Social Network for Type 1 Diabetes - Medscape - Jul 06, 2011.