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Type 1

The T1D Exchange: A story of David and Dana’s drive to accelerate innovative type 1 diabetes research.

by Adam Brown, Hannah Deming, Nancy Liu, and Kelly Close

twitter summary: David Panzirer and Dana Ball discuss the T1D Exchange, a program to accelerate innovative type 1 diabetes research, in part four of our interview

short summary: We had a wide-ranging interview with two of the pioneers of the Helmsley Charitable Trust’s (HCT) Type 1 Diabetes (T1D) program (which gives $50 million a year to type 1 research, treatment, and services): HCT trustee David Panzirer and T1D Exchange CEO Dana Ball. In part four of our interview, David and Dana share insights on the T1D Exchange, their program to accelerate innovative type 1 diabetes research and drive toward better therapies. Read on and please stay tuned for the last installment in our five-part series in our next issue:

Part 1. How The Helmsley Charitable Trust became one of the most important players in diabetes, and the funding needs and challenges in type 1

Part 2. The Future of the Type 1 Diabetes Field – what challenges and promises lie ahead?

Part 3. Debates in Diabetes: Technology, Debates, and the “Cure”

Part 4. The T1D Exchange: A story of David and Dana’s drive to accelerate innovative type 1 diabetes research

Part 5. What can diabetes advocates learn from successes of the HIV/AIDs movement?

The T1D Exchange is the first program of the new nonprofit organization Unitio, and was originally developed with funding from the Helmsley Charitable Trust. The program incorporates data from an online community of patients (the Glu community) and a network of more than 70 clinics to further innovative research for type 1 diabetes, encourage participation in clinical studies, and create a world-class resource of clinical, demographic, and study-derived information.


KELLY: Looking back at what you did in deciding to make the T1D Exchange registry, you were way ahead of your time. Can you take us back?

DANA: As a grant maker, as the guy who invested a philanthropist’s money, it was important for me to fund projects based on evidence. Without really understanding what was happening in people with type 1 diabetes, I didn’t sleep at night. Each grant seemed like a long shot, and we were funding just another investigator with mouse data saying, “I think this is going to be the cure.” And I sat there with my arms crossed asking, “How do you do this?”

I wanted a compass. I wanted a large database and an engine to inform what we know about type 1 diabetes and where to go, Now we have the evidence on these patients. We have a collection of biosamples that we know everything about. Now, who’s the right researcher to do the analysis? Who’s the right company to partner with and what is the right study?

ADAM: In other words, T1D Exchange is sort of a GPS in your toolbox?

DANA: That’s right. The Exchange is a compass to drive our research and accelerate studies. Say investigator A comes to you and says, “Our drug hits a target in the mouse, and we think it will work in type 1 patients.”. Well, in the near future, we can look in T1D Exchange and say, “How many patients have this target, and if we don’t have the answer, we can get it.” The T1D Exchange network of over 70 clinics also provides a network for clinical studies – we can now go from concept to trial very quickly.

Even companies can look at a drug target or a mechanism in the patient population. Think of all the wasted money that goes into drug development. Wouldn’t it be better to know earlier if something is only going to work in 2% of the patients? I believe the richness of the data over time will allow us to understand more about clinical relevance and what’s worth moving forward. Development time and access to data and patients are expensive obstacles we hope to solve with the T1D Exchange.


KELLY: What are you most proud of now that T1D Exchange is established? 

DAVID: The T1D Exchange Registry data have been presented all over the world, and the data is being used to help direct all who play in the type 1 diabetes space.

DANA: I’m proud that it was created by the community, for the community, and now the community is seeing the benefits and working with the Exchange as a facilitator of research. I’m also very proud that the clinical community has given so much to make this happen, and I’m blown away by their commitment and collaboration.

ADAM: How has the T1D Exchange data affected type 1 diabetes? In your view, what has been or would ultimately be a home run?

DANA:  I think the data has educated us and our clinicians about the reality of the state of type 1 diabetes care and outcomes in 2014. I also think the registry has created a platform for clinicians and patients to learn more about the person with diabetes.

A home run is data that is used to create change – better care, used when necessary for regulatory and reimbursement issues, and educating the public about the challenges of living with type 1 diabetes. Glu members help industry understand what they want and need in products and therapies, and we are working on supporting type 1 breakthroughs from beginning to end.

DAVID: When you start with a goal of delivering a drug, device or therapy to market, you have two gatekeepers: the FDA and the payers. Both need data for different reasons, the FDA to prove that it is safe and the payers to prove that it is effective. Dana had the vision when creating the Exchange so that it could fill this huge void.

KELLY: What has been the biggest surprise?

DANA: Two years ago when we started the conversation, I thought industry would jump up and down and want to work with us immediately. I thought they would want to work with us from discovery to delivery of new therapies and devices. We had patients, we had the network, we had everything. I was surprised how long it took to get these first industry partnerships moving along. I underestimated the challenges of working within companies to try to take a collaborative approach to developing better drugs and devices for patients.


HANNAH: How do you prioritize research questions to look at in T1D Exchange?

DANA: It has to be a dynamic approach. The first phase of creating a registry was to get an understanding of the state of how people were living with type 1 diabetes. Now, we get on the phone and say, “What are the best uses of the Exchange and what are the most important questions we can address?” My top two areas are automating insulin delivery and exploring available type 2 drugs for type 1 diabetes. We’re always thinking about what are our top priorities and what’s the Exchange data needed to support those priorities.

We have to think about how to keep the data fresh and relevant. First, we have to understand device data on an annual basis because the world’s going to change quickly every year that we go forward. Second, we’re going to have to understand everything about patients, and we’re going to have to understand a world beyond just insulin.

I always think in ten years – what’s going to happen and what else do we need? I also worry about NIH/NIDDK funding, especially the Special Diabetes Program. What if we had to fill the gaps? What if we had to do more? We’re trying to think about ways to prepare.

ADAM: What do you feel is the most key data to set us up for success with the artificial pancreas, especially to help a lot of patients get access and reimbursement?

DANA: It has to be outcomes data. I think that we have to really start to push on new endpoints: glycemic variability and a better quality-of- life scale. I think the FDA appreciates the data, and it helps support their decision process. But when it comes to payers, you need to prove that a little bit more money spent upfront will help overall healthcare costs. We just have to raise our efforts to meet the higher bar. And we can’t think of it as an afterthought. We can’t be naïve enough to create a product or device and not think of the end game: getting it reimbursed.

DAVID: What is key is to show that a device can eliminate a big chunk of severe hypos or improve people’s outcomes, which is measured by A1c right now and absence of complications; if you do that, you dramatically increase the chances that the payers will pay for it. Ultimately, it will be cheaper than paying for all the hospitalizations from severe hypos or complications stemming from poor glycemic control.

KELLY: Absolutely. When you talk about improving outcomes, do you mean showing fewer long-term complications?

DANA: I think outcomes are all-inclusive. When I think about outcomes, I think about how people can live their lives as normally as possible while managing type 1. Ultimately, that will allow them to avoid long-term complications and short-term severe hypos. A huge component that is often overlooked is quality of life. People who live with this disease don’t want to be defined by it.

HANNAH: What do you hope T1D Exchange looks like in five or ten years? 

DANA: We want to integrate our registry data collection with electronic medical records in as many clinic sites as possible so we can cost effectively include all patients in the registry – I would be very happy if we can grow the registry to 50,000 patients [Editor’s Note: There are currently more than 26,000 patients in the registry]. We are also exploring how to work with the clinics to develop a quality improvement program for our patients. We are very interested in exploring global opportunities, and my hope is we will have sites outside the US that will collect similar data and provide locations for improving care and supporting clinical studies. Developing the T1D Exchange as the network for accelerating new products and therapies would be a win-win for patients, clinicians, sponsors, and healthcare.

[Editor's note: Disclosure: diaTribe is supported in part by a grant from the Helmsley Charitable Trust.]


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