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T1D Exchange registry generates vital information on individuals with type 1 diabetes of all ages
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PHILADELPHIA — Collective data from over 25,000 patients with type 1 diabetes will allow clinicians and researchers to better understand and manage their patients’ diabetes, according to data presented here at the American Diabetes Association’s 72nd Annual Scientific Sessions.
Richard Bergenstal, MD, vice chair for the Type 1 Diabetes Exchange, and executive director of the International Diabetes Center, said this is the first time researchers have been able to see how patients with the disease are doing across the United States.
“Good glucose control is really critical, and in the future we hope to cure this disease,” Bergenstal said during a presentation. “What’s exciting about the T1D exchange is that we are focusing now on managing diabetes; are we achieving control? What are the barriers to control? What will help us get there?”
Roy W. Beck, MD, PhD, Director of the Jaeb Center for Health Research in Tampa, Fla., and colleagues established and coordinate the Exchange, which consists of a clinic registry, bio bank and the patient social networking website, Glu (myglu.org). Patients across the country, and eventually globally, will have access to the website where they can learn more about advances in diabetes management and support one another in a variety of ways. They can also express their interest in participating in research, and researchers can use it as a tool to recruit patients for further collective data.
In 5 separate analyses, researchers collected data from 67 pediatric and adult endocrinology practices around the country. Recruitment began in September 2010, and the registry has already reached its goal of 25,000 patients.
“We capture about two-thirds of our data directly from patients,” Beck said.
The characteristics of patients range as follows:
- 1,171 patients under age 6
- 6,490 patients aged 6-13
- 5,907 patients aged 13-18
- 3,611 patients aged 18-26
- 4,216 patients aged 26-50
- 2,721 patients older than 50
Beck said that a very key group to study is the approximately 1,000 patients who have had diabetes for more than 40 years, half of which have had no complications with diabetes.
The majority of adults with type 1 diabetes were overweight or obese, with a mean HbA1c 7.5% to 8%. Although the adults over age 50 had the lowest mean HbA1c of all the age groups (7.6%), they had severe hypoglycemia rates of 14% to 20% per year, including events like seizure and coma.
Of the patients over age 40, 20% to 30% had diabetes-related complications, the research team reported. Additionally, those under age 12 had an average HbA1c level of 8.3%, but those aged 13 to 17 years averaged 8.7%.
The researchers said that among youth, lower HbA1c levels were linked to continuous glucose monitoring, younger age and being Caucasian, and their parents had a higher income, education and private health insurance.
For more information:
- Weinstock Abstract #1374-P. Presented at: the American Diabetes Association’s 72nd Scientific Sessions; June 8-12; Philadelphia.
Disclosures:
- Dr. Beck reports no relevant financial disclosures. Dr. Bergenstal reports several financial disclosures relating to several pharmaceutical companies.
Perspective
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Kelly Rawlings
The fact that they are gathering data from clinical centers as well as from the online community with Glu is a real change and a real enhancement of type 1 research. This will help knock down the silos between what happens in the clinical world and what happens at home or at work or in school. I think that’s going to be really important for quality-of-life and improved diabetes management.
In the meantime, all those stats, demographics, psychographics and bio samples will inspire more basic science — why the immune system attacks the beta cells in type 1 diabetes and what we can do to stop that.
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