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In a previous T1D Exchange led initiative, the T1D Exchange Clinic Registry encompassed 25,000 participants from 81 clinic sites across the U.S. who drove type 1 diabetes (T1D) research and produced real-world data on T1D. Upon the Clinic Registry’s closing, T1D Exchange launched the online T1D Exchange Registry in June of 2019 to lower barriers to research, increase participation, and strive to develop a more diverse population. The Registry is currently recruiting adults with T1D and parents/guardians of children who have T1D, living in the U.S. The Registry is a streamlined platform where participants enroll by completing screening questions, signing consent, and answering an initial questionnaire. Participants then complete an annual questionnaire to track health, disease management, and changes in outcomes over time. As of March 2020, there are over 5,300 participants enrolled in the Registry, with over 56% having completed their initial questionnaire. Currently, 10.9% of participants are between the ages of 1-17 years, 70.2% are between 18-55 years, and 18.9% are 56 years or above. This cohort represents a wide range of years since diagnosis, with 23.4% diagnosed within the past 5 years and 24.8% diagnosed more than 30 years ago. The majority identify as Caucasian (94.1%) and female (70.2%), with geographic representation from every U.S. state and territory. Among the pediatric cohort (<18 years), 24% reported A1C below 7.0%, whereas 36.1% of adults between 18-55 years reported A1C below 7.0%; 77.8% of adults 56 years or above reported A1C lower than 7.5%. The Registry cohort appears to be more technology-skilled than other T1D cohorts reported in the U.S., with 77.0% of participants currently using a CGM, and 67.2% using an insulin pump. Future projects for the Registry include analyzing longitudinal data, linking device data, sharing clinical trial opportunities, and providing additional research opportunities to participants.
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