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According to Tom Robinson, vice president of global access at JDRF, the creation of the Type 1 Diabetes (T1D) Index was prompted by a lack of basic data on the condition, such as how many people are living with and affected by T1D.
The immediate goal of the Type 1 Diabetes (T1D) Index is to shine a light on the scale and burden of T1D so actions can be taken to enhance research, develop better policies, and make other improvements, said Tom Robinson, vice president of global access at JDRF.
What prompted the development of the T1D Index?
We kept hearing stories about people with type 1 who might be dying at onset and they're misdiagnosed with typhoid or were struggling to survive with really limited care. So, a few years ago, we said let's look at this, let's look at global access, let's look at the role that JDRF wants to play and needs to play to really make sure that everyone is having that transformative, life-changing breakthrough that is available for research.
But as soon as we started looking at that, we found that the most basic numbers like how many people have type 1, how well they're living with type 1, those very basic numbers just didn't exist. Where we did have estimates, you could compare them with registry data and go, "Oh, well, that estimate’s wrong. It's off by 50% or 100%. I can't trust the estimates more broadly."
So, as we were asking around and seeing who might have some private estimates or data to share, what we ended up finding was there's nothing that was fit for purpose, but there were a lot of people who wanted it. And so we started putting together a coalition to go create those numbers. And that's really what started the project 2.5, 3 years ago.
What is the goal of the T1D Index, and what impact do you hope to see it have?
The immediate goal is essentially to shine a light on the scale and burden of type 1. That way we can all see it more clearly and take action, and it's very hard to fix a problem you can't see. That action will take a lot of different forms; it might mean more research or different research, it might mean better policy or better care provision reforms, it might mean different personal decisions that people make about their own care. But it's really just about that metaphor of shining a light, just making it really clear to people that is the first primary goal of the index.
When I talk about it, I sort of then start to bleed into, okay, let's go do stuff now, because I think the data are really compelling, and JDRF has now created a global access department and we're investing in the space. We're talking to other foundations and large industry players who also want to make a difference, and there's so much action that I'm seeing come out of this. But the index specifically, it is that transparency, that visibility of the burden of type 1, that's the goal.