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The T1D Exchange clinic registry.
Roy W Beck1, William V Tamborlane, Richard M Bergenstal
1Jaeb Center for Health Research, 15310 Amberly Drive, Tampa, Florida 33647, USA.
The T1D Exchange registry collected data from over 25,000 individuals with type 1 diabetes (T1D). This comprehensive dataset offers insights into T1D patient characteristics and management across the United States.
Area of Science:
- Endocrinology
- Diabetes Research
- Clinical Registries
Background:
- The T1D Exchange initiative comprises a clinic-based registry, a patient-focused website (Glu), and a biobank.
- It aims to gather extensive data on individuals with type 1 diabetes.
Purpose of the Study:
- To characterize the T1D Exchange clinic registry.
- To provide an overview of the demographic and clinical characteristics of its participants.
Main Methods:
- Data collection involved questionnaires and chart extraction from 25,833 participants across 67 US endocrinology centers.
- Information gathered included diabetes history, management, complications, general health, lifestyle, and laboratory results.
Main Results:
- Participants spanned ages 1 to 93, with 50% female and 82% Caucasian.
- Common management included insulin pumps (50%) and continuous glucose monitoring (6%).
- Complications like renal disease and retinopathy were less prevalent in the early years of T1D, while severe hypoglycemia and diabetic ketoacidosis affected 7% and 8% respectively in the prior year.
Conclusions:
- The T1D Exchange clinic registry is a valuable resource for understanding type 1 diabetes in the US.
- Its rich dataset facilitates research into patient characteristics, management strategies, and health outcomes.
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