Early detection and preventive treatment of an increased risk of type 1 diabetes
Between the second and third day of life, newborns are checked for treatable metabolic and hormonal disorders as part of the standard newborn screening tests. In the following, we would like to draw your attention to another free, additional screening test for babies for the early detection of an increased risk of type 1 diabetes. Parents whose children are at an increased risk of developing the disease are given detailed information in a personal consultation on how to avoid complications and possibly prevent the occurrence of type 1 diabetes. The test is carried out by your doctor and can take place together with the standard newborn screening or at any visit to the doctor until your child is four months of age.
Why is it a good idea to have a screening test for the risk of developing type 1 diabetes?
Type 1 diabetes is the most common metabolic disease in children and adolescents. It is caused by insulin deficiency. Insulin helps transport glucose from your blood into your cells. Children with type 1 diabetes must therefore be treated with insulin for life. One difficult aspect of type 1 diabetes is that it is usually only recognised when the person affected already has serious and sometimes even life-threatening symptoms. Conversely, if children at risk of type 1 diabetes are identified early, complications and possibly the development of type 1 diabetes can be prevented. Type 1 diabetes primarily occurs in individuals who have certain high-risk genes. Most children who have these high-risk genes and develop diabetes do not have any relatives with diabetes. In other words, the disease can affect anyone. In our screening test we check to see if your child has high-risk genes for type 1 diabetes. Approximately 1% or ten out of every 1,000 children in Germany have high-risk genes for type 1 diabetes.
How does the screening test for type 1 diabetes work?
To identify whether an infant has high-risk genes for type 1 diabetes, a few drops of blood are taken immediately after birth via a small prick in the baby’s heel, from the umbilical cord, or via a venous blood sample. The drops of blood are placed onto specimen collection paper. Your baby should not be older than four months at the time of screening.
Where can my child participate?
Parents in various European countries (Belgium, Germany, the UK, Poland and Sweden) can have their children tested for an increased risk of developing type 1 diabetes. In Germany, all infants up to the age of four months in Bavaria, Lower Saxony, Saxony and Thuringia can be tested for an increased risk of type 1 diabetes, free of charge, as part of the Freder1k study. The test can be carried out at a maternity clinic or, if you are outside of Saxony and Thuringia, by your paediatric practice.
Throughout Germany, babies who have a parent or sibling with type 1 diabetes can participate in the Freder1k study, no matter where in Germany they live.
What happens if the test result is normal?
You will not be contacted if the test result is normal. This means that no news is good news. If you have not heard from your doctor or the Institute of Diabetes Research, Helmholtz Zentrum München within twelve weeks of the test, you can assume that your child does not have high-risk genes for type 1 diabetes. If you are still unsure, you can call us to ask whether your child has an increased risk of type 1 diabetes – via our freephone number: 0800 000 0018. Please understand that it is not possible for us to provide details of your child’s genotyping. This also applies in the event that high-risk genes are identified.
What happens if the test finds that my child has high-risk genes?
If your child has high-risk genes for type 1 diabetes, your doctor or the Institute of Diabetes Research, Helmholtz Zentrum München will contact you within twelve weeks of the blood test. In this case we will offer you a place in the POInT prevention study. The aim of this study is to prevent the development of type 1 diabetes. Parents and children who do not wish to participate in the POInT study are given the opportunity to participate in a follow-up check at the age of two. Through this follow-up check, we can identify at an early stage whether your child is actually developing type 1 diabetes. The earlier the disease is detected, the sooner it can be treated. In Germany, for every 100 children with high-risk genes, about ten of these children will develop an early stage of type 1 diabetes by their sixth birthday.
What can I do if the test finds that my child has high-risk genes?
If your child is found to have an increased risk of type 1 diabetes, we will offer you the opportunity to take part in the POInT prevention study. Type 1 diabetes is caused by the immune system mistakenly reacting to the cells in the pancreas that produce insulin. The immune system begins to destroy these cells. The POInT study aims to prevent the destruction of insulin-producing cells in children with an increased risk of type 1 diabetes. In this study we are trying to train the immune system so that this mistaken reaction does not occur. We do this with insulin powder, which is given daily, together with a meal. The body’s own insulin is often the first target of the mistaken immune reaction, which leads to type 1 diabetes. Through exposure via the mucous membranes of the mouth and the digestive tract, the aim of giving insulin powder is to train the immune system to tolerate the body’s own insulin, thereby preventing the destructive immune reaction. You will be given detailed information about participation in the POInT study in a personal consultation.
>> Take advantage of this opportunity: have your child tested for the risk of developing type 1 diabetes so that they can receive preventive treatment if needed.
Would you like to learn more about the risk of developing type 1 diabetes or preventive treatment? More information is available here.
Why should I have my child tested?
6+ good reasons why you should take part in the Freder1k study:
The Freder1k study...
- … tests your child for an increased risk of type 1 diabetes, the most common metabolic disease in children and adolescents.
- … identifies the one child in 100 children who is at increased risk of type 1 diabetes.
- … enables families affected to participate with their child in prevention studies that aim to prevent the onset of type 1 diabetes.
- … helps with early detection of type 1 diabetes in children with an increased risk through follow-up testing between two and ten years old.
- … provides affected families with comprehensive advice.
- … helps reduce any fears and uncertainties about type 1 diabetes for families affected.
More information on participating
You will find more information on how to participate on the webpages for each area. These also list the contact details of the various study centres, which you can contact if you have any questions.
Participating in Bavaria
Participating in Lower Saxony
Participating in Saxony and Thuringia
Participating throughout Germany (for children with a first-degree relative with type 1 diabetes)
Participation for children with relatives with type 1 diabetes in other states in Germany is coordinated via the study centre in Bavaria.