Measuring a Year – the First Anniversary of the T1D Exchange Registry

June marks a milestone of great importance and excitement for T1D Exchange – it’s been exactly one year since the T1D Exchange Registry launched to the public, bringing together a large number of people with type 1 diabetes from around the country.

Over the last year, we’ve seen a huge and rewarding surge of interest – not just from people with diabetes, but also from the parents and caretakers of children with T1D, clinicians, researchers, and partners.

The purpose of the Registry is to bring together a population of individuals from all walks of life and backgrounds who share the common journey in dealing with type 1 diabetes. As we reach this one-year milestone, we are sending out our Annual Survey to members who have been with us for at least 12 months. We hope to gather even more data and insight about how our community lives with this chronic disease.

Some Key Facts About the Registry

To celebrate our growth and success, we’d like to share some of the numbers and metrics collected from our project. While we still have a great deal of narratives and data to gather, the numbers tell an important story so far.

Here are the figures in brief:

  • As of June 1, there are 8,124 participating members of the T1D Exchange Registry.
  • 4,914 members have completed the Core Questionnaire, the initial survey which forms the foundation of the T1D Exchange dataset.
  • So far, 71 participants have completed the Annual Questionnaire, allowing us a look at the longitudinal growth and development of the T1D population. By the end of June, 576 participants will be eligible.
  • CGMs are popular among T1D Exchange Registry participants – 77.7% currently use a CGM.
  • Insulin pumps are also relatively common – 70.6% of Registry participants reported using an insulin pump.
  • Every state and territory in the U.S. is represented – we’re super excited to see participants coming from all around the country. 
  • The youngest Registry member is 1 year old, while the oldest reported an age of 89 years

Thank You and Next Steps

We cannot thank the T1D Community, our Glu family, and all of the partners that we’ve worked with to get this far, enough for their contributions. The T1D Exchange Registry is a critical project and one that would be impossible without your cooperation.

If you haven’t already joined and would be interested in doing so, it only takes about 15 minutes to sign up and complete the initial questionnaire. You can join the Registry using your mobile device or computer from anywhere in the United States. Help us get to 12,000 and beyond this summer!

Thank you again, and if you have any questions about research participation, please feel free to contact us at Registry@T1DExchange.org or (617) 892-6165.

Sign in or Register to view comments.