Global T1D Registry Aims to Change Future of Diabetes Care
By Natalie Sainz
The Type 1 Diabetes Index, a first-of-its-kind global database of people with type 1 diabetes, is a large registry of data designed to power critically important changes in diabetes. Tom Robinson, vice president of global access at JDRF, discusses the origins of the new T1D index and what this will mean for people with type 1 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 were thinking about the grand strategy of type 1 diabetes globally and what to do, and we just didn’t have any data,” said Tom Robinson, vice president of global access at JDRF. “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. 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.
“We have type 1 incident studies from 75% of the world’s population, and that wasn’t true 10 years ago,” said Robinson.
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.
Proper data can prompt better decisions
With better, 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.
“One of the goals is that people with resources can make better decisions, whether it be JDRF, the government, the Gates Foundation. We want them to make better decisions,” Robinson said.
For example, the information in the Index shows that if everyone in India with type 1 diabetes had test strips, their lives would be extended by 20-25 years. The Index clearly shows the direct impact of specific interventions (such as increasing access to test strips) on overall life expectancy for people with T1D. Data like this provides the global diabetes community with information that could be used to advocate on a mass scale.
“I don’t think there’s a force more powerful in public health than an informed group of people living with a condition,” Robinson said.
Robinson explained that 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.
For example, data from the Index shows that every time a person changes their injection site, the change adds about 20 hours to their life. As people become aware of this, they may start changing injection sites more frequently, as changing sites increases the efficacy of injection.
While there are many people who are already well informed on diabetes prevalence, treatment, and management, this isn’t the case for every person with diabetes or clinician.
As clinicians prescribe and provide resources like insulin, test strips, and coaching, they are able to point to the numbers and give an estimated number of years that they are adding to each person’s life. Robinson explained that patient advocates and clinicians can take this data to their local government and ask for funding and other resources to help more people in their state. “The data can help equip the community to advocate on a group level,” said Robinson.
A multi-stakeholder approach
To get the most accurate and representative numbers, JDRF, Life for a Child, ISPAD, and IDF collected data from 550 clinics around the world. In addition to these professional organizations and advocacy groups, the coalition recruited 50 people with diabetes who helped shape the data analysis and final result of the project (the Index).
For example, the concept of the “missing people” number (people who should be alive today) came from a parent who said that their son “should be alive with us today.”
Additionally, people in this group of 50 talked about how type 1 affected them in so many different ways, which prompted the concept of “healthy years lost.”
“We knew it couldn’t just be us,” Robinson said. “I don’t think we could have [developed the Index] without bringing all these people together. We wanted to create a movement with the type 1 community to make it better and make it a shared source of truth.”
Next steps
The data in the T1D Index will hopefully propel some people to get screened for type 1 diabetes, take action, and provide access to diabetes supplies and technology in order to save millions of lives around the world. Robinson explained that the group who worked on the Index will begin conversations with nongovernmental organizations (NGOs), foundations, and industry to discuss how to act on these interventions and identify what is needed.
“I feel very lucky and very privileged at the nexus of all these incredible people doing incredible work, and I hope I can live up to the challenge and responsibility,” Robinson said. “I’m going to retire one day, sit on a rocking chair, and say ‘yep, that was it, that was the thing I did that mattered the most.’”
