Newly Created Registry Provides First Comprehensive Analysis of Type 1 Diabetes Patients in U.S.

National Registry Includes 25,000 Patients of All Ages

Philadelphia, PA
June 9, 2012
Contacts Colleen Fogarty
cfogarty@diabetes.org 703-549-1500 ext. 2146

In the most comprehensive analysis of people with type 1 diabetes ever undertaken in the United States, researchers found that most people with type 1 diabetes fail to meet treatment targets, are more often than not overweight or obese as adults, and have difficulty, even under the best of circumstances, reaching target A1C levels as youth, according to data presented at the American Diabetes Association’s 72nd Scientific Sessions®.

Researchers presented findings from five separate analyses, which examined data from the T1D Exchange Clinic Registry – a collection of data from more than 25,000 volunteer participants of all ages from 67 clinics nationwide.

“This is the first time we’ve ever been able to get a really clear picture of how people with type 1 diabetes are faring in the United States,” said Richard M. Bergenstal, MD, executive director of the International Diabetes Center and vice-chair of the T1D Exchange. “The Leona M. and Harry B. Helmsley Charitable Trust have done a remarkable thing by funding the Jaeb Center for Health Research in Tampa, directed by Roy W. Beck, MD, PhD to establish and coordinate this comprehensive registry of patients with type 1 diabetes. The challenge from the Helmsley Trust was to collect common data about living with diabetes, managing diabetes and clinical outcomes being achieved by patients with T1D across the US. Now we finally have large enough numbers of patients collecting common data to know where we are getting it right and where we need to target our efforts for improvement in treatment and care.”

Specifically, the analyses found: Despite advances in diabetes care, most people with type 1 diabetes in the United States still fail to meet treatment targets established by the American Diabetes Association; in fact, a majority of adults with type 1 were overweight or obese with blood glucose levels in the elevated range (A1C averaging from 7.5-8 percent). While older adults (over age 50) had the lowest average A1C of all age groups (7.6 percent), they also had a surprising percentage (14-20 percent per year) of severe hypoglycemia (seizure, coma, ER visit) and in those over age 40, 20-30 percent have diabetes-related complications.

“Obviously, we need to do a better job of helping all people with type 1 reach target treatment goals, address disparities in care among racial groups and investigate why older patients with type 1 are experiencing such a high rate of dangerously low blood glucoses levels (resulting in seizure and coma for instance) as they strive to improve their overall glucose control (A1C levels),” Bergenstal said.

William V. Tamborlane, MD, Chief of Pediatric Diabetes and Endocrinology at Yale University and the other vice-chair of the T1D Exchange, stated that, “even though our targets for glucose control are a bit higher in children than adults, target A1C levels remain difficult for youth with type 1 diabetes to achieve under the best of circumstances, especially during the teenage years.” The A1C average was 8.3% for those under age 12 but 8.7% for those 13-17 years old. 

Researchers also analyzed racial differences in treatment and care, and found that Caucasian patients were more likely to use an insulin pump compared to minorities even when income levels were equivalent and that African Americans had a higher mean A1C compared with Caucasians. Finally, they looked at the predictors for good glucose control in both young people and adults and found several similarities. In both age groups, lower A1C levels were associated with more frequent self-monitoring of blood glucose levels, lower insulin dose requirements (less insulin resistance) and greater use of advanced technologies like an insulin pump and continuous glucose monitoring. In adults, lower A1C levels were also associated with being married and a higher socioeconomic status. Among youth, lower A1C levels were also associated with younger age, being Caucasian, and their parents having a higher income, education and private health insurance.

Tamborlane added, “With over 13,000 children and young adults in the T1D Exchange Registry we are generating so much important information that the Youth Diabetes Interest Group session will focus on the characteristics and future prospects for those who develop T1D as children and will introduce a new online community for people with diabetes called Glu (myglu.org).”  

The Youth Diabetes Interest Group session will be held Sunday, June 10th at 12:30 p.m. in room 113.

Press Conference: Saturday, June 9, 11:30 a.m.