As the T1D Exchange Registry celebrates its 5th anniversary, let’s explore what “longitudinal” research is and why it is important for everyone living with diabetes. 

Longitudinal research studies collect recurring data over an extended timeframe — rather than at a single point in time. This information can be particularly valuable when studying life-long conditions like type 1 diabetes (T1D). Examining repeated data for changes over time gives researchers deep insights into the condition.  

It’s also why, as a participant in the Registry who has completed a core questionnaire and ongoing annual questionnaires, you are providing valuable contributions to longitudinal T1D research. Your yearly participation informs the research team about your experiences and challenges with diabetes over time.  

Moreover, many of you have also participated in other T1D-related studies that have yielded valuable findings. With over 20,000 people currently participating in the T1D Exchange Registry, we aim to be the most extensive longitudinal cohort study of people living with T1D. 

 As a Registry participant, you are making a difference in T1D research and helping to shape the future of T1D care for everyone. Your voice provides significant insights into T1D, so please keep sharing your experiences! 

 

You may wonder how your participation in the Registry is making a difference. Let’s look at five research studies over five years.  

1. Validation of fear of hypoglycemia screener: results from the T1D Exchange Registry 

Research data from T1D Exchange Registry adult participants helped to shape a 9-item “Fear of Hypoglycemia Screener” tool. Almost 600 adults participated in the research, with about 30% reporting fear of hypoglycemia over the past year. The screener showed good reliability and validity for adults living with T1D — and higher fear of hypoglycemia scores correlated with higher A1C levels. 

Further research is planned for how this tool can be incorporated into routine care to identify individuals with fear of hypoglycemia, initiate effective conversations about the anxiety surrounding hypoglycemia to help inform management decisions, and determine appropriate referrals for support.  

  

2. Gaps Remain in Achieving Target T1D Glycemic Goals Despite Advanced Technologies  

A one-time survey of adult participants from the T1D Exchange Registry and T1D Exchange Online Community was administered, and about half of the participants provided up to a year of continuous glucose monitoring (CGM) data. Participants also shared information on their medical history, A1C values, and severe hypoglycemic events — while other data was extracted from the shared CGM data. 

The study found that despite improvements with advanced technologies (hybrid closed-loop systems versus pump + CGM and multiple daily injections + CGM) and glycemic target goals, many continued to fall short of clinical target goals and continued to experience significant hypoglycemic events (once yearly on average). This research highlights the unmet need for new T1D treatments. 

 

3. Automated Insulin Delivery Use among 12,065 T1D Exchange Registry Participants 

Data was examined from adults and children in the T1D Exchange Registry to understand user profiles of automated insulin delivery devices (AID) systems, their associated A1C values, the incidence of ketoacidosis (DKA), and severe hypoglycemia.  

 Of the 12,000+ participants, about a quarter reported using AID systems. Results showed decreased A1C values and incidence of severe hypoglycemic events in those using AID systems (versus multiple daily injections or insulin pumps without AID capabilities).  

This cross-sectional data supports previous research findings showing improvements in A1C values and decreased incidence of severe hypoglycemic events with the use of a hybrid closed-loop AID system. 

 

4. Associations between Diabetes Distress and CGM Metrics in Adults in the T1D Exchange Registry 

Adult CGM users were recruited for an online survey to better understand how CGM use is related to diabetes distress. Study findings showed that those with T1D using CGM who reported higher levels of diabetes distress had higher A1C values and, per their CGM data, had more glucose variability, a higher glucose management index, and spent more time above the target range than those with lower levels of diabetes distress.  

 

5. Exploring Attitudes Toward Autoantibody Screening in People Living with T1D, Caregivers, and First-Degree Relatives 

This study explored attitudes about autoantibody screening by recruiting participants from the T1D Exchange Registry or through a referral from an Online Registry participant. Study findings from four focus groups identified generally positive aspects of autoantibody screening, such as information and knowledge, but also barriers — the most common being the anticipated emotional burden of receiving positive screening results. 

Importantly, the study discovered that a healthcare provider’s recommendation may sway an individual to complete autoantibody testing. 

 

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