New Index Aims to Clarify Type 1 Diabetes Burden Worldwide

A new online tool will reflect the burden of type 1 diabetes in every country around the world, with the aim of enabling advocacy and policy change.

Set to launch in early 2022, the T1D Index is a project of the type 1 diabetes advocacy and funding organization JDRF in collaboration with the International Diabetes Federation (IDF), the International Society for Pediatric and Adolescent Diabetesty (ISPAD), Life for a Child, Beyond Type 1, and Abbott.

"Type 1 diabetes needs much greater attention and much greater investments than it is currently receiving around the world. A major impediment to attracting that attention and demanding that investment is a lack of understanding of the scale and burden of the disease. This index should provide that in a very robust manner and in a way that both demands attention and enables action to address it," JDRF Australia CEO Michael Wilson told Medscape Medical News.

The index will compile data from more than 200 studies and apply advanced machine learning techniques to model population incidence, prevalence, mortality, and other factors reflecting the burden of the condition for every country in the world.

It will attempt to more completely address the lack of information around relatively basic questions, such as how many people ― adults and children ― have type 1 diabetes in each country, where they are, how well they are doing, how that is changing over time, and the potential effects of various improvements, such as improving diagnosis and increasing access to insulin and glucose test strips.

"We don't have studies in most countries to answer these questions, but we still need to make decisions on where to invest in research and advocacy and in access. That's where the T1D Index comes in," Wilson said during a presentation earlier this month at the IDF Virtual Congress 2021.

Asked to comment, Sarah H. Wild, MD, PhD, professor of epidemiology at the University of Edinburgh, United Kingdom, told Medscape Medical News, "Better data are certainly needed for advocacy and health service planning in many countries.

But she also noted, "Details of the Index are limited at present so it's not clear how validation will be performed. It seems likely that there will be important gaps in data that artificial intelligence and machine learning may not be able to address. A key outcome may be identification of the most important gaps in available data and robust plans to fill some of those."

One in Three With Type 1 Diabetes Are "Missing"

Four key areas of information will be modeled in the Index: burden, prevalence, incidence, and mortality.

For burden, each country will receive an index score between 0 and 100, where 100 represents zero burden of type 1 diabetes compared to the background expectation of longevity and health in that country. Around the world, those numbers range from the high 80's to the high 20's. "There's enormous diversity," Wilson said.

Included in the Index will be a new concept, "missing prevalence," the proportion of people with type 1 diabetes who died due to the condition but who would still be alive had they been given access to care.

Overall, "for every two people currently living with type 1 diabetes, we are missing the company of a third person who should be alive but isn't, due to either death at onset or early mortality due to less-than-optimal standards of care.... That is a shocking statistic that should be demanding investments but has never been quantified before," Wilson emphasized.

The Index will also model incidence data, which have been increasing rapidly in many parts of the world due to a combination of factors only partly explained by better diagnosis. "It's a common misconception that there isn't much type 1 diabetes in low-income countries. That's not the case. There just isn't survival. There isn't awareness to allow diagnosis even if there is availability of treatment because they're misdiagnosed and sent home."

While life expectancy increased by almost 30 years between 1960 and 2020, there is still a 20-year life expectancy gap for those with type 1 diabetes globally, he noted.

The Index model will also be able to simulate the impact of various interventions by a particular year in the future.

Boosting the diagnosis rate to 100% will lift the burden of type 1 diabetes by roughly a third by 2040, as would making access to basic care ― insulin and test strips ― for all. These types of estimates can be made for each individual country.

Once the initial version of the Index is launched, it will be open to feedback so that it can be refined to inform the next iteration. Version 2.0 will include economic elements, Wilson told Medscape.

"If you have better data, help us improve this. We will be open source and evolving over time. If there are studies we have missed or that are new, let us know. Our expert group will include it."

Ultimately, he said, "We want the index to be a community asset that turns passion into action."

Wilson is an employee of JDRF. Wild attends meetings of the Scottish Study Group for Diabetes in the Young, for which registration, accommodation and subsistence is subsidized by Novo Nordisk.

International Diabetes Federation Virtual Congress 2021: Presented December 6, 2021.

Miriam E. Tucker is a freelance journalist based in the Washington DC area. She is a regular contributor to Medscape, with other work appearing in the Washington Post, NPR's Shots blog, and Diabetes Forecast magazine. She is on Twitter @MiriamETucker.

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