Jaeb Center for Health Research, 15310 Amberly Drive, Tampa, Florida 33647, USA.
J Clin Endocrinol Metab. 2012 Dec;97(12):4383-9. doi: 10.1210/jc.2012-1561. Epub 2012 Sep 20.
The T1D Exchange includes a clinic-based registry, a patient-centric web site called Glu, and a biobank.
The aim of the study was to describe the T1D Exchange clinic registry and provide an overview of participant characteristics.
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.
Data were collected from 67 endocrinology centers throughout the United States.
We studied 25,833 adults and children with presumed autoimmune type 1 diabetes (T1D).
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%.
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.
T1D 交换中心包括一个以诊所为基础的注册中心、一个名为 Glu 的以患者为中心的网站和一个生物库。
本研究旨在描述 T1D 交换中心的诊所注册，并提供参与者特征的概述。
通过参与者完成问卷和图表提取获得的数据包括糖尿病史、管理和监测、一般健康状况、生活方式、家族史、社会经济因素、药物、急性和慢性糖尿病并发症、其他医疗状况和实验室结果。
数据来自美国各地的 67 个内分泌中心。
我们研究了 25833 名患有疑似自身免疫性 1 型糖尿病（T1D）的成年人和儿童。
参与者的年龄从不到 1 岁到 93 岁不等，50%为女性，82%为白种人，50%使用胰岛素泵，6%使用连续血糖监测，16%有一级亲属患有 T1D。登记时的糖化血红蛋白平均为 8.3%，在 13 至 25 岁的人群中最高。至少存在 10 年 T1D 时，肾脏疾病的患病率≤4%，至少存在 20 年 T1D 时，视网膜病变的治疗率≤2%。在过去的 12 个月中，有 7%的参与者报告了严重低血糖事件（癫痫或昏迷），有 8%的参与者报告了糖尿病酮症酸中毒。
T1D 交换中心诊所注册为美国 T1D 个体提供了一个重要信息数据库。该注册中心丰富的数据集提供了一个机会，可以解决许多与临床医生和患者相关的问题，包括评估患者特征与糖尿病管理因素与结果之间的关联。
