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A World Without Type 1 Diabetes Type 1 Diabetes in Children: Early Detection as Standard Care?

At Helmholtz Munich, scientists are working to ensure that no child will have to suffer from the autoimmune disease type 1 diabetes in the future.

At Helmholtz Munich, scientists are working to ensure that no child will have to suffer from the autoimmune disease type 1 diabetes in the future.

Type 1 diabetes is the most common metabolic disease in childhood and adolescence, with rapidly growing numbers. In Germany, about 1 in 250 children and adolescents is affected. Almost 90 percent of children with the disease do not have close relatives with type 1 diabetes. The disease can therefore affect any child. One of the biggest issues of the disease is that it is usually not recognized until severe, and in some cases, life-threatening symptoms have already developed. If more children are screened for diabetes risk early on, these instances can be prevented. However, unfortunately, screening measures are still not universally available and very few clinical studies offer early detection tests.

A few drops of blood is all it takes for early detection of Type 1 Diabetes

For Anette-Gabriele Ziegler, the fight against type 1 diabetes is near and dear to her heart. Together with her colleagues, the Fr1da study, the world's largest population-based screening for type 1 diabetes in children, was launched at Helmholtz Munich. Since 2015, families in Bavaria have had the opportunity to have children between the ages of two and ten tested for early stages of this autoimmune disease thanks to Fr1da. To do this, scientists only need a few drops of the child's blood. If so-called islet autoantibodies are present in the blood, it is an indicator for inflamed insulin-producing cells of the pancreas. These antibodies can be detected in the blood years before symptoms occur and are important tools for the early diagnosis of type 1 diabetes.

What is Fr1da?

The Fr1da study tests whether a child has developed an early stage of type 1 diabetes, using only a few droplets of blood. It is offered in the federal states of Bavaria, Lower Saxony, Hamburg, and Saxony. All children aged 2 to 10 years can be tested. Participation in the early detection screening for type 1 diabetes is voluntary and free of charge. Additionally, children of relatives with type 1 diabetes between the ages of 1 and 21 can participate nationwide.

Type 1 diabetes: A lifelong insulin deficiency

Type 1 diabetes is an autoimmune disease. The body's immune system, which primarily fights off pathogenic germs, attacks and destroys the insulin-producing cells of the pancreas. As a result, insulin production stops. The hormone insulin transports glucose, after being absorbed from food, from the blood into the cells to be used for energy production. In the case of insulin deficiency, glucose accumulates in the blood. People with type 1 diabetes, must therefore inject insulin to prevent far-reaching health issues caused by excessively high blood glucose levels.

Early detection of Type 1 Diabetes enables better treatment

Since 2015 over 200,000 children were examined within the Fr1da study and 577 of these children (0.3 percent) were diagnosed with early-stage type 1 diabetes. It can be assumed that of these children, half will clinically manifest type 1 diabetes within five years, and about another third within five to ten years. The remaining children with early-stage type 1 diabetes (20%) will require insulin treatment in ten to twenty years.

In order to prepare parents of affected children, they can participate in a training program as part of the Fr1da study and are referred early-on to a pediatrician's office or pediatric clinic specializing in type 1 diabetes. In addition, researchers of the Fr1da study have developed a new method (progression likelihood score) that allows for the identification of children with rapid disease development—about 50 percent become insulin-dependent within two years. These children canbenefit from earlier and better insulin treatment management, as well  access to new therapies. The research of the last decades also points to further benefits for the disease progression in affected children. Diagnosing the autoimmune disease early on during the asymptomatic stage of the disease reduces the occurrence of metabolic imbalances and ketoacidosis at clinical manifestation of type 1 diabetes. Thereby, neurocognitive impairments can be prevented. Additionally, early-stage diagnosis is associated with a milder disease course and improved residual insulin secretion, which can lead to improved long-term metabolic control and reduction of hospital stays.

Position Paper Summarizes the Benefits of Early Detection

In a new position paper, experts from the Fr1daPlex initiative, the Professional Association of Pediatricians (BVKJ) Bavaria, and PaedNetz Bayern e.V. have presented a detailed assessment of islet autoantibody screening for the early detection of type 1 diabetes in children and adolescents in Germany. They summarize recent research findings providing an overview of advantages, potential disadvantages, and the steps necessary for implementation of a population-wide screening program.

A new position paper, published by experts from the Fr1daPlex initiative, the Professional Association of Pediatricians (BVKJ) Bavaria, and PaedNetz Bayern e.V., provides a comprehensive evaluation of islet autoantibody screening for the early detection of type 1 diabetes in children and adolescents in Germany. The authors discuss the benefits of this screening for the general population as well as potential risks. The full position paper on the early detection of type 1 diabetes can be found here:Achenbach, Peter et al.: Early Detection of Type 1 Diabetes through Islet Autoantibody Screening – a Position Paper by the Fr1daPlex Project Leaders and Training Centers, BVKJ Bavaria, and PaedNetz Bayern e.V. In: Das Gesundheitswesen, 2024 (online), DOI: 10.1055/a-2320-2859.

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In the Fr1da study, the cost of screening was around 28 euros per child. Adopting these screening measures in standard medical care could reduce the cost to about 22 euros per screened child, as estimated by Helmholtz Munich researchers. These costs can be offset by the potential savings for the healthcare system through the prevention of metabolic disorders and their accompanied secondary diseases. Research has shown that children have an improved quality of life as a result of an early diagnosis and that parents of early diagnosed children were less stressed.

Early detection tests cost only 22 euros—detection for all children

In the Fr1da study, the cost of screening was around 28 euros per child. Adopting these screening measures in standard medical care could reduce the cost to about 22 euros per screened child, as estimated by Helmholtz Munich researchers. These costs can be offset by the potential savings for the healthcare system through the prevention of metabolic disorders and their accompanied secondary diseases. Research has shown that children have an improved quality of life as a result of an early diagnosis and that parents of early diagnosed children were less stressed.

Researchers Call for Rapid Integration into Healthcare Systems

Nine out of ten children affected by type 1 diabetes have no close relatives with the condition. Researchers like Anette-Gabriele Ziegler and her colleague Peter Achenbach are therefore advocating for early detection of type 1 diabetes to be made accessible to all children in Germany in the future. They are working towards including the test in the regular coverage of health insurance providers. Among others, they are supported by the German Diabetes Association (Deutscher Diabetiker Bund e.V.). Additionally, the new EDENT1FI consortium marks the launch of a European-wide initiative advocating for broad access to early detection of type 1 diabetes across borders. 13 European countries are involved in this initiative, coordinated by KU Leuven in Belgium and co-lead by Helmholtz Munich. Based on the model of the Fr1da study, new screening projects are currently being established in Italy, the Czech Republic, Poland, and Portugal. Besides the model from Germany, well-established initiatives from Denmark, Sweden, and the UK contribute their expertise to the consortium.

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Latest update: October 2024.

The Scientists

Portrait Peter Achenbach

Prof. Dr. med. Peter Achenbach

Deputy Director, Lead Scientist Research Area: Study Center for Childhood Diabetes
Anette G. Ziegler_84_freigestellt

Univ.-Prof. Dr. med. Anette-Gabriele Ziegler

Institute Director, Chair of Diabetes and Gestational Diabetes, Klinikum rechts der Isar and Technical University of Munich, Director of the Global Platform for the Prevention of Autoimmune Diabetes (GPPAD) View profile