The T1D exchange clinic registry
Abstract
CONTEXT: The T1D Exchange includes a clinic-based registry, a patient-centric web site called Glu, and a biobank. OBJECTIVE: The aim of the study was to describe the T1D Exchange clinic registry and provide an overview of participant characteristics. DESIGN: Data obtained through participant completion of a questionnaire and chart extraction include diabetes history, management, and monitoring; general health; lifestyle; family history; socioeconomic factors; medications; acute and chronic diabetic complications; other medical conditions; and laboratory results. SETTING: Data were collected from 67 endocrinology centers throughout the United States. PATIENTS: We studied 25,833 adults and children with presumed autoimmune type 1 diabetes (T1D). RESULTS: Participants ranged in age from less than 1 to 93 yr, 50% were female, 82% were Caucasian, 50% used an insulin pump, 6% used continuous glucose monitoring, and 16% had a first-degree family member with T1D. Glycosylated hemoglobin at enrollment averaged 8.3% and was highest in 13 to 25 yr olds. The prevalence of renal disease was ≤4% until T1D was present for at least 10 yr, and retinopathy treatment was ≤2% until T1D was present for at least 20 yr. A severe hypoglycemic event (seizure or coma) in the prior 12 months was reported by 7% of participants and diabetic ketoacidosis in the prior 12 months by 8%. CONCLUSIONS: The T1D Exchange clinic registry provides a database of important information on individuals with T1D in the United States. The rich dataset of the registry provides an opportunity to address numerous issues of relevance to clinicians and patients, including assessments of associations between patient characteristics and diabetes management factors with outcomes.
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Occurrences of severe hypoglycemia and DKA (9.0 and 0.6 events per 100 person-years, respectively, in the safety cohort) observed during the study period are in line with other literature with estimates ranging from 7 to 130 and 4 to 8 events per 100 person-years, respectively, in insulin-requiring diabetes populations using MDI therapy.
“Occurrences of severe hypoglycemia and DKA (9.0 and 0.6 events per 100 person-years, respectively, in the safety cohort) observed during the study period are in line with other literature with estimates ranging from 7 to 130 and 4 to 8 events per 100 person-years, respectively, in insulin-requiring diabetes populations using MDI therapy (39-43).”
From Observed Glycemic and Psychosocial Benefits in the Prospective Bigfoot Unity Real World Study: A 6-Month Analysis (2025) · cites this paper as [43]
The study was conducted at 12 diabetes centers within the T1D Exchange Clinic Network after approval by institutional review boards.
“The study was conducted at 12 diabetes centers within the T1D Exchange Clinic Network after approval by institutional review boards (8).”
From Continuous Glucose Monitoring Profiles in Healthy Nondiabetic Participants: A Multicenter Prospective Study (2019) · cites this paper as [8]
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Self-citation
- Authors
- Beck, R. W., Tamborlane, W. V., Bergenstal, R. M., Miller, K. M., DuBose, S. N., Hall, C. A., & for the T1D Exchange Clinic Network
- Affiliations
- Jaeb Center for Health Research (US)
- Yale University (US)
- Park Nicollet Health Services (US)
- Corresponding author
- DuBose, Stephanie N.
- Venue
- The Journal of Clinical Endocrinology & Metabolism
- Publisher
- The Endocrine Society
- Published
- 2012-12-01
- Volume
- 97
- Issue
- 12
- Pages
- 4383-4389
- ISSN
- 0021-972X (ISSN-L)
- 1945-7197
- OpenAlex
- W2019439229
- Cited by
- 456
- References
- 8
- Citations by year
- 2026: 9 · 2025: 18 · 2024: 24 · 2023: 22 · 2022: 24 · 2021: 28 · 2020: 43 · 2019: 37 · 2018: 46 · 2017: 44 · 2016: 44 · 2015: 53 · 2014: 34 · 2013: 30
- FWCI
- 30.01
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Journal of Clinical Endocrinology & Metabolism (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Leona M. and Harry B. Helmsley Charitable Trust
- Topics
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Research
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Diabetes and associated disorders
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Keywords
- type 1 diabetes, T1D Exchange, participant characteristics, insulin pump therapy, continuous glucose monitoring, diabetes complications, diabetic nephropathy, diabetic retinopathy, hypoglycemia, diabetic ketoacidosis, HbA1c, family history of diabetes, diabetes management
- MeSH terms
- Adolescent, Adult, Aged, Aged, 80 and over, Child, Child, Preschool, Diabetes Mellitus, Type 1, Female, Humans, Infant, Male, Middle Aged, Outpatient Clinics, Hospital, Registries, United States, Community Networks, Young Adult
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