At clinical diagnosis of type 1 diabetes, between 20% and 67% of children and adolescents present with diabetic ketoacidosis (DKA), a life-threatening condition in which dangerous acids build up in the blood because the body has little or no insulin. One third of those cases are so severe that they require intensive care.
But what if we could spot the disease years earlier and prevent DKA and other complications of high blood sugar? There may be hope.
A new landmark paper has outlined an international consensus framework for screening the general population for early-stage type 1 diabetes. The guidance was convened by Breakthrough T1D, a global type 1 diabetes research and advocacy nonprofit, and developed by nearly thirty leading experts from around the world. It has been formally endorsed by twenty global diabetes societies and organizations, including the European Association for the Study of Diabetes (EASD), the International Society of Pediatric and Adolescent Diabetes (ISPAD), and the International Diabetes Federation (IDF)-Europe.
Why does this consensus guidance matter?
Until now, screening efforts have largely focused on children with a family history of type 1 diabetes although most people who develop the disease have no family history at all. This guidance recommends that screening be offered to all young children regardless of their family background. It provides clinicians with clear, evidence-based pathways for whom to screen, when to screen them, and what to do with the results.
The benefits of catching the disease early are substantial. The most dramatic one is the reduction in the risk of DKA. For example, in the US-based ASK study, DKA occurred in 4.5% of children with early-stage type 1 diabetes who were followed through screening, compared with 58% of children diagnosed without prior screening.
Early diagnosis and management of high blood sugars also improves treatment outcomes after insulin is started. This can reduce the risk of long-term complications affecting the kidneys, blood vessels, and nerves.
Identifying type 1 diabetes at an early stage can also allow certain children to access novel disease-modifying therapies like teplizumab (Tzield). Teplizumab is the first approved drug that can delay the progression from stage 2 to stage 3 type 1 diabetes. Clinical trials show a median delay of almost three years in children and adults at high risk. For some eligible children, that could mean additional years of life without insulin injections or the constant vigilance that the condition demands. It also gives families time to learn about the disease without the pressure of a medical crisis.
How the screening works
Type 1 diabetes is an autoimmune disease where the body’s immune system mistakenly destroys the insulin-producing beta cells in the pancreas. This process starts long before a child ever feels sick, and can be detected through blood tests that look for four types of islet autoantibodies associated with the immune attack.
The new guidance describes three stages of type 1 diabetes, depending on the blood test results:
- Stage 1: A person has two or more confirmed autoantibodies but normal blood sugar levels and no diabetes symptoms (like excessive thirst, frequent urination, fatigue, unexplained weight loss, and blurry vision).
- Stage 2: Autoantibodies are present and blood sugar levels are abnormal, but not yet in the diabetic range. Symptoms may still be absent.
- Stage 3: Blood glucose has risen into the diabetic range and symptoms may be present. This is what people traditionally think of as a clinical diagnosis of type 1 diabetes.
For children, the expert group recommends general population screening between 2–4 years because this is the window when islet autoantibodies first appear most frequently. If that first test is negative, the guidance recommends a second screening between 6–8 years and a final screening opportunity between 10–15 years.
Importantly, the guidance emphasizes that an initial positive screening result should never be treated as a diagnosis of its own. It must be confirmed with a second blood test.
What challenges still need to be worked out?
General population screening and early detection isn’t without consequences or challenges. The experts note that:
- A diagnosis of early-stage type 1 diabetes may cause immediate and long-term anxiety among parents, although this could decrease over time.
- Even after a confirmed diagnosis of early-stage disease, predicting exactly when a child will progress to stage 3 is challenging. That uncertainty can complicate decision-making by medical teams and families, particularly when considering therapies like teplizumab.
- Confirmation of early-stage disease may also lead to stigmatization or discrimination in healthcare, insurance, education, employment, and social settings.
- Screening has a cost beyond the initial blood test. Health systems need to consider the expenses of repeat testing, confirmatory testing, monitoring, and specialist care. These costs could be challenging in countries with limited healthcare resources.
- Much of the data informing the guidance comes from study cohorts that lack racial and ethnic diversity. More research is needed to understand how the disease progresses and how screening performs in populations outside Europe, North America, and Australia.
The Bottom line
Type 1 diabetes may no longer have to be a disease we discover only after symptoms appear. Population-wide screening could give doctors a chance to identify the disease earlier and potentially delay its progression before clinical diabetes develops. But making that promise a reality will require more research, affordable testing, reliable follow-up, and treatments that can meaningfully change the disease’s course.
