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11 Estimating the burden of T1D in ASPED countries and diabetes index program
  1. Tom Robinson
  1. Vice president of global access at JDRF


The Type 1 Diabetes Index, a first-of-its-kind global database of people with type 1 diabetes (T1D), is a large registry of data designed to power critically important changes in diabetes. Before the Type 1 Diabetes Index, relatively little was known about the prevalence and incidence of type 1 diabetes globally, leading to questions about how to most effectively treat the disease. The T1D Index, launched in August 2022, is the first type 1 diabetes global registry to accurately depict the scope of the disease around the world. ‘We need to have good data to make good decisions.’

According to the Centers for Disease Control and Prevention, data and indexes ‘can be used to monitor progress and determine whether actions have the desired effect.’ Data such as that from the T1D Index allows public health professions and anyone else in the healthcare community to predict trends and properly respond to problems that a disease can cause.

The lack of information led to a coalition of groups that included JDRF, Life for a Child, International Society for Pediatric and Adolescent Diabetes (ISPAD), and International Diabetes Federation (IDF) to create a dataset that no one else had created. To get the most accurate and representative numbers collected data from 550 clinics around the world. In addition to these professional organizations and advocacy groups. While some data on diabetes prevalence existed, there were no specific statistics on how many years of life were lost to diabetes, what interventions were needed to improve and extend lives, and even accurate numbers on how many people have type 1.

The T1D index lists four key interventions-timely diagnosis, providing insulin and test strips, pumps and CGMs, and investing in prevention and cures-as the most important strategies that could prevent complications and save millions of lives. The T1D Index group chose these interventions because their model showed they would make the biggest difference in the lives of people with T1D. Data in the Index shows the impact that these interventions could have on the diabetes community in a way that is quantifiable and relatively digestible. For example, according to the T1D Index, if everyone in the United States had access to pumps and CGM, another 7.3 of health years of life could be added to someone with type 1 diabetes.

With better and more accurate data, it is hoped that the Index will prompt improved action from government, advocates, and insurers to improve access to care for people with diabetes.

The Index shows how certain actions by people with diabetes affect health, life expectancy, and overall quality of life. This could spark conversations between healthcare providers and people with diabetes about how to best improve diabetes management.

The data in the T1D Index will hopefully propel some people to get screened for T1D, take action, and provide access to diabetes supplies and technology in order to save millions of lives around the world.

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