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The T1D Exchange Registry was launched June of 2019 to increase participation in research and probe a diverse set of topics impacting the type 1 diabetes (T1D) population. The Registry is an online platform that recruits adults and parents/guardians of children with T1D who live in the U.S. Participants complete screening questions, sign informed consent, and answer an initial questionnaire regarding health and diabetes management. Subsequently, participants complete an annual questionnaire to track changes in diabetes management and outcomes. As of March 2021, the Registry encompasses 7630 participants who have completed their initial questionnaire and 1063 who have completed their one-year annual questionnaire. This report focuses on the cohort of participants who have completed their annual questionnaire. These participants reported an average age of 45.2 years, ranging from 4 to 85.7 years, and an average T1D duration of 25.8 years. This cohort is more technology-oriented than other reported cohorts, with 88.8% of participants using a CGM (an increase from 82.5% at their time of enrollment) and 78.6% using an insulin pump (an increase from 74.7% at their time of enrollment). Additionally, 58.2% carry a glucagon kit and 11.2% use medications other than insulin to lower blood sugar. At the time of the initial questionnaire the cohort reported an average A1c of 7.2 and subsequently 6.8 at the one-year questionnaire. However, 15.0% reported experiencing severe hypoglycemia, defined as a change in mental and/or physical functioning and needing help from another person, while 6.7% reported diabetes-related ketoacidosis (DKA) symptoms over the last 12 months. This subset of Registry participants who are highly engaged, heavy technology users, and meet target A1cs, still report severe hypoglycemia and DKA symptoms, suggesting that there is potential for improvement in diabetes management and care.
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T1D Exchange Registry: Current Insights on Participant Outcomes
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