It’s time to consider screening all children for early signs of type 1 diabetes, a new study suggests.
In the United States, only individuals who have family members with the disease or a known genetic risk are routinely screened for the early stages of type 1 diabetes. But a 10-year study in Germany reports that extending the screening successfully identified more children without a family history of the disease, researchers report May 21 in the Journal of the American Medical Association. About 90 percent of people who develop type 1 diabetes do not have family members with the disease.
The team screened more than 220,000 children and found that 590 were in the early stages of the disease. Of the 260 children who went on to develop type 1 diabetes in the follow-up period, 212, or 81 percent, had been tagged by screening. Had it been restricted to those with a family history, only 101 of the 590 in the early stages would have been identified and only 34 of the 212 who progressed to type 1 diabetes.
Not only do people with type 1 diabetes do better if they are diagnosed early, but knowing the diagnosis is coming “can help people prepare for what life will be,” says pediatric endocrinologist Jennifer Sherr at Yale School of Medicine, who was not involved in the new study. There is also a new medication, called teplizumab, that can delay onset of the disease for those in one of the early stages.
Type 1 diabetes is an autoimmune disease in which the body destroys cells in the pancreas, called beta cells, that produce insulin. This hormone is essential for regulating blood levels of the sugar glucose, the body’s main source of fuel. Managing the disease requires individuals to monitor their blood sugar and inject multiple, varying doses of insulin throughout the day. Close to 4 in 1,000 children report having the disease in the United States.
Early stages of type 1 diabetes aren’t symptomatic. In stage 1, the body has begun destroying beta cells, but blood glucose levels are still normal. A blood test that is positive for two or more proteins, called autoantibodies, that wrongly target beta cells confirms this first stage. If a person tests positive for two or more autoantibodies plus blood glucose levels are becoming abnormal, an individual is at stage 2. For children in these early stages, there is an 85 percent or higher risk of ending up with type 1 diabetes, or stage 3, within 15 years. The progression from early stages to the clinical disease happens more quickly in children than in adults.
Usually by the time a person is diagnosed with type 1 diabetes, they have symptoms and many beta cells have been lost. Often, the diagnosis occurs because of a medical emergency: diabetic ketoacidosis, a life-threatening situation in which insulin is so low, it’s not possible for the body to access glucose for energy. Blood sugar spikes and acids accumulate in the blood as the body turns to breaking down fats. Shortness of breath, feeling thirsty, confusion and vomiting are among the symptoms; without treatment, a person can become comatose and die. For 30 to 40 percent of children in the United States, their diagnosis of type 1 diabetes happens because they develop diabetic ketoacidosis.
Knowing whether an individual is in the early stages of type 1 diabetes means that monitoring and treatment can also begin early, making it possible to avoid diabetic ketoacidosis. Past research has found that having this condition at the time of diagnosis is linked to poorer control of the disease for children and teens.
The new study screened and followed up with preschool- and elementary school–aged children from 2015 to 2025 in Bavaria. The families of children who were identified as having early stage disease had access to diabetes education and monitoring at diabetes centers. The German research team also reported that the rate at which children with early stages progressed to clinical disease was the same whether they had family members with type 1 diabetes or not.
Along with early monitoring and treatment, the medication teplizumab, which helps prevent the destruction of beta cells, is approved for children and adults in stage 2. This 14-day infusion treatment delayed the progression to clinical type 1 diabetes in a study of children and adults by around four years compared with around two years in the placebo group, researchers reported in 2019 in the New England Journal of Medicine. That can let a young child get a little bit older before needing insulin or not having to start in “the middle of teenage years and allow people to just grapple with adolescence itself,” Sherr says. “It’s amazing to think about having that time” before taking on the burden of regular treatment.
In the United States, there are studies testing the implementation of general population screening for type 1 diabetes in the Dakotas and Colorado.
