JDRF Launches Global T1D Index

The JDRF, formerly known as the Juvenile Diabetes Research Foundation, has launched the Type 1 Diabetes (T1D) Index, the T1D research and advocacy organization announced in a press release.

The T1D Index is a globally representative data simulation tool that measures how many people live with T1D around the world and by country. According to the index, the current estimated number is 8.7 million.

It also estimates that 3.9 million people should be alive today if they had not died prematurely due to poor T1D care or a lack of diagnosis. Further, the index measured 32 years of healthy life lost per person living with T1D.

The T1D Index also spotlights several important statistics on the burden of the autoimmune condition, including the fact that T1D prevalence has increased at 4 times the rate of global population growth since 2000, and that the estimated number of people living with T1D in 2040 will be up to 17.4 million.

The estimates included in the index are based on predictive modeling, including results of a global survey of more than 500 endocrinologists and 400 publications.

In an interview with The American Journal of Managed Care® (AJMC®), Tom Robinson, vice president of global access at JDRF and coauthor of the publication, talked about the challenges in developing the T1D Index.

“From the start, we knew that we had to deal with the challenge of scarce data,” he said. “We don't have registries in every country, we're not going to get them anytime soon, although that's where we need to get to eventually.”

Using predictive modeling and working with data scientists, JDRF developed the first version of the model with the first estimate.

Robinson called this a “decent start,” but said collaborating with experts from various countries and academic disciplines helped JDRF refine the methodology used in the T1D Index.

Beyond creating estimates, the data simulation tool also teaches users what actions can be done to reduce the global impact of T1D, including:

• educating physicians to make timely diagnoses
• creating barrier-free access to insulin and blood glucose testing strips
• ensuring access to technologies such as insulin pumps and continuous glucose monitors
• encouraging further investment and research into preventing and curing T1D

“Until now, there have been wide gaps in the data about the incidence and impact of T1D,” the press release stated. “Leveraging data and insights from the T1D Index can help change the lives of people living with T1D by identifying attainable country-by-country interventions including timely diagnosis, accessible care and funding research that could lead to cures.”

Robinson also discussed with AJMC® the “extraordinary generosity” of people affected by T1D who have contributed to the development of the T1D Index.

“It can be really powerful if you get them involved early enough and often enough,” said Robinson, adding that additional feedback going forward will help JDRF improve the index’s modeling as it is updated annually.

“All that change is going to come straight out of the community, whether it be patients or doctors or allied health or whatever it may be,” said Robinson. “And I think that's one of the most powerful things about the index: It's not just the science we've done today, but the science we get to do tomorrow.”