T1D Exchange Registry Data Provides Insight into Current Trends of Management in Type 1 Diabetes

Wendy Wolf, PhD

Data obtained from the T1D Exchange registry presented at the American Diabetes Association’s 81st Scientific Sessions (ADA 2021) suggest engagement in such a program could lead to improvements in diabetes management and care.

A look at data from more than 1000 patients with type 1 diabetes who completed the Exchange’s annual questionnaire, results of the study detail a group of highly engaged patients who met their HbA1c targets, but also reported experiencing severe hypoglycemic and symptoms of diabetes-related ketoacidosis.

"This data show that these highly engaged Registry participants are doing well meeting their A1c levels with support from advanced technology, which is fantastic, but there is still room for therapeutic improvement and uptake of diabetes technology," said Wendy Wolf, PhD, Vice President of Registry and Outcomes Research at T1D Exchange, in a statement. "There are few large U.S. datasets like our Registry that are capturing the authentic experience of people living with T1D. By understanding how people self-manage their disease, the community receives a more complete picture than relying on clinical data alone."

Created in June 2019, the T1D Exchange Registry was designed with the goal of providing clinicians with longitudinal data on disease, health status, and self-reported outcomes among patients with type 1 diabetes. A mobile-friends online platform that allows patients to enroll in less than 20 minutes, the registry contained more than 7600 patients with type 1 diabetes as of March 2021.

The ADA 2021 analysis was created to assess the current state of disease management, technology utilization, and rate of disease complications among patients who had completed the baseline entry questionnaire and the 1-year annual questionnaire. Of the 7630 patients enrolled in the registry, 1063 had completed the annual questionnaire at the time of analysis.

These patients had a mean age of 45.2 years, with patients ranging in age from 4 years to 85.7 years. The mean duration of diabetes among these patients was 25.8 years. At enrollment, the mean HbA1c was 7.2% and, at the 1-year follow-up, this figure had decreased to 6.8%.

Further analysis indicated the cohort within the T1D Exchange registry had begun a rapid uptake in use of CGM during the first year of enrollment, with 88.8% reporting use of CGM at follow-up compared to 82.5% at enrollment. Additionally, 78.6% reported use of an insulin pump in the 1-year questionnaire compared to 74.7% at the time of enrollment. Investigators also pointed out 58.2% reported carrying a glucagon kit and 11.2% reported use of medications other than insulin to lower blood sugar.

Overall, 15% of patients included in the analysis reported experiencing severe hypoglycemia within the past 12 months and 6.7% reported diabetes-related ketoacidosis symptoms during the 12 months since enrollment.

"By examining real-world trends in T1D care, we can identify issues and direct our implementation science and quality improvement efforts to drive positive change," said David Walton, Chief Executive Officer at T1D Exchange, in the aforementioned statement. "As a leader in population health research and collaboration, we will continue generating evidence for the diabetes community to help improve care for all, and resolve persisting inequities and disparities for the 1.6 million people living with T1D in the U.S."

This study, “T1D Exchange Registry: Current Insights on Participant Outcomes,” was presented at ADA 2021.