If you have a child with type 1 diabetes, your other kids have about a 15 percent risk of developing the disorder. A large screening program is now underway to identify siblings (as well as other relatives) of those with type 1 diabetes, and more than 118,000 individuals have been screened already.

The National Institutes of Health TrialNet Pathway to Prevention Research Study, which is taking place at major medical centers across the country, is open to anyone between the ages of 1 and 45 with a brother, sister, child, or parent with type 1 diabetes. If you are 20 or under and have a cousin, aunt, uncle, niece, nephew, or half sibling with type 1 diabetes, you also are eligible to participate in the screening.

"It's important for relatives to be screened," says Ellen M. Greenberg, MS, the Lead Coordinator of the Type 1 Diabetes Research Group at Naomi Berrie Diabetes Center /Columbia University in New York City. "If testing showed that you were at risk, you may be eligible to take part in a program that may prevent diabetes."

The test is a simple blood test that looks for proteins in the blood known as "autoantibodies." These proteins show that a person is at a higher-than-average risk for developing type 1 diabetes.

Type 1 diabetes makes an appearance suddenly, with symptoms such as thirstiness, frequent urination, and weight loss. But the disease actually starts to wreak havoc on the body some years earlier, researchers believe.

"Up to nine years before being diagnosed with type 1 diabetes, a person may have evidence of antibodies," says Anita Swamy, MD, medical director of the diabetes program at La Rabida Children's Hospital in Chicago, Illinois. "These antibodies may present well in advance of symptoms."

Type 1 diabetes is most commonly diagnosed in young people (the peak age at diagnosis is from age 5 to 8 and again in adolescence). However, it can strike at any age. "It's really important to realize that you can get type 1 diabetes as an adult," Greenberg says.

Some 95 percent of the people screened in the TrialNet study come up negative. But those who appear to be at risk for developing type 1 diabetes may participate in a trial to see what could delay or prevent the development of fullblown diabetes. Those who take part in the Oral Insulin Prevention Study take a daily oral insulin capsule. The AntiCD3 Prevention Study is focusing on whether a drug called Teplizumab can preserve insulin production in individuals just diagnosed with type 1 diabetes. So far, it's not known whether these are effective or not.

Whether or not to be screened is a personal decision. "By screening you may find out if you have a higher risk and be able to prevent getting sick at diagnosis by being more aware of signs or symptoms of diabetes than you otherwise might be," says Jeniece Trast, RN, CDE, MA, of Montefiore Medical Center in New York City. "You also may have the opportunity to be a part of a prevention study."

You may not directly benefit by being a part of this research, she says. "But you are helping researchers better understand the natural progression of type 1 diabetes and potentially be helping your great grand kids in the future," Trast says. 

Anita N. Swamy, MD, reviewed this article.




Knip, Mikael, MD. "Should we screen for risk of type 1 diabetes?" March 2008. Diabetes Care.

Mrena, Samy, MD. "Models for predicting type 1 diabetes in siblings of affected children."  March 2006. Diabetes Care.

"TrialNet goes to camp." Diabetes Education and Camping Association."

"Natural history study of the development of type 1 diabetes." Type 1 diabetes TrialNet.