JDRF Research

Study Finds Type 1 Incidence in U.S. May Be Higher Than Thought

A new research study estimates that about 15,000 children and adolescents in the United States are diagnosed with type 1 diabetes every year, a number higher than the incidence reported by previous U.S. childhood diabetes registries.

SEARCH for Diabetes in Youth, a multi-center study of childhood diabetes in racially and ethnically diverse populations, is the largest surveillance effort of diabetes among people under the age of 20 conducted in the U.S. to date. The study includes 10 locations across the country where about 5.5 million children live.

“For the first time from medical researchers, we have an accurate estimate of the incidence of diabetes in youth in the United States, including numbers from minority groups,” said Marie Nierras, JDRF’s Director of Partnerships and Consortia. “The data show that the incidence of diabetes is rising, and has enormous health policy implications, both nationally and for every state.”

In a report in the Journal of the American Medical Association, study investigators identified 2,435 youth who were diagnosed with type 1 and type 2 diabetes in 2002 and 2003.  Extrapolating that over the U.S. population, they note that the estimated overall incidence of diabetes in youth is 24.3 per 100,000 per year.

The study also found that, contrary to conventional wisdom increasingly portrayed in the media, the vast majority of people under 20 with diabetes have type 1, not type 2, diabetes.

In children under 10, regardless of their race or ethnicity, most patients with diabetes had type 1 diabetes, previously known as juvenile or insulin-dependent diabetes. Among non-Hispanic white children ages 5-9, the incidence was 28.1 per 100,000 per year; for ages 10-14, the rate was 32.9.  This incidence is higher than previously believed and confirms the perception among researchers that the incidence of type 1 diabetes is increasing.

Even among older youth ages 10-14, type 1 diabetes was frequent among non-Hispanic white (32.0 per 100,000 per year), African-American (19.2 per 100,000) and Hispanic adolescents (19.2 per 100,000 per year), but was much less common among Asian Pacific Islander (8.3 per 100, 000 per year) and Native American youth (7.1 per 100,000 per year). In all age groups, the highest rates of type 1 diabetes were observed in non-Hispanic white boys and girls.  

The study was funded by the Centers for Disease Control and Prevention (CDC) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), a part of the National Institutes of Health (NIH).  Resources from the NIH Special Funding Program for Type 1 Diabetes Research supported the study.  The program provides $150 million a year in medical research support for type 1 diabetes but is set to expire at the end of
next year unless reauthorized by Congress.

SEARCH investigators will continue to track the incidence of diabetes in youth in all of the various population groups through 2009.

“Continuing this surveillance effort is essential to document temporal trends in the incidence of diabetes among various racial and ethnic groups and accurately assess the future health care burden of diabetes and its complications in the U.S. pediatric and young adult population,” said lead author Dana Dabelea, M.D., Ph.D., an Associate Professor of Preventive Medicine at the University of Colorado at Denver and Health Sciences Center’s School of Medicine, and SEARCH principal investigator (PI) for the Colorado site.