Woman showing another woman data on her smartphone about health and exercise.

The T1D Exchange Registry launched last year, and it’s begun to provide a fascinating and vital look into some of the more detailed aspects of life with type 1 diabetes. From your age of diagnosis to frequency of testing, we’ve learned more about how you’re living, working, and caring for diabetes across the country.

As more and more participants fill out annual questionnaires and register for studies, we’ll be able to learn even more about the reality of type 1 diabetes today. Of course, if you haven’t signed up for the Registry yet, you can do so easily here – it’s free, mobile-friendly, and only takes a few minutes.

Here are some of the key findings we’ve made so far:

  1. Age of Diagnosis: Most of the Registry participants – 45.8% in total – were diagnosed young, before the age of 12. The second-largest group by age were early adults, with 28.2% diagnosed between 18 and 35. Finally, a small minority were actually diagnosed after the age of 56, representing a rare but meaningful subset of those who receive their diagnosis later in life.
  2. Insulin Delivery Systems: Here’s one area where the T1D Exchange Registry differs from the overall global population of people with diabetes. Fully 70% of participants use some form of insulin pump or tubeless infusion system, compared to 29.1% of people using insulin pens, and 1.3% on inhalable insulin. In addition, 14% of respondents still use multiple daily injections via syringe.
  3. Daily Monitoring Frequency: Checking your blood sugar or monitoring it via CGM is one of the cornerstones of diabetes therapy and care, but different people take different approaches to this. Our Registry found three fairly consistent groups. Most participants reported testing 1-3 times daily, comprising 39.6%, while almost as many – 34.2% – said they tested 4-7 times each day. 8% of you reported testing yourselves or your child 8-11 times daily, while on the low end, fully 16% reported no daily testing whatsoever. It’s important to note that for some people on modern, self-calibrating CGMs, daily testing with a meter is essentially a thing of the past.
  4. Means of Diagnosis and DKA: For many people with diabetes, weeks or months of symptoms can culminate in a rush to Urgent Care and a diagnosis via DKA. We wanted to find out how common that experience was – and it turns out that 31.4% of the Registry community were in fact diagnosed as a result of DKA. However, it was actually more common – 33.7% of respondents – to be diagnosed as a result of a single blood glucose measurement of more than 200mg/DL. For 17.5% of respondents, diagnosis occurred via some other method, and 5.5% were actually diagnosed due to their HbA1c values.
  5. Demographic Benchmarks: As always with long-term research studies, it’s important to understand the groups participating in the efforts. In the case of the T1D Exchange Registry, we have a fairly normal distribution of ages, with 37.6% between the ages of 18 and 35 years old, 33.1% between 36 and 55 years, and 19% aged 56 years or older. In total, 10.4% are the parents or caretakers of children with diabetes under the age of 18. To date, many participant’s biological sex at birth is female (71.3%) rather than male (28.7%).

As Registry recruitment grows and expands, we definitely expect some of these figures to change and evolve. Our goals remain to build an even more representative, effective, and rigorous cross-sample of people living with type 1 diabetes in the United States, and to open up opportunities for collaboration in research and innovation.

Wherever you are, and however you’re browsing the web or learning about diabetes, the T1D Exchange Registry is bringing the research to you.

Be heard. Support the type 1 diabetes community. Help drive research that matters.For more information, or to join, visit the T1D Exchange Registry, or contact us at (617) 892-6165 and Registry@T1DExchange.org.