Since your baby has a first-degree relative (mother, father, or full sibling) with type 1 diabetes (T1D), his/her risk of developing diabetes is higher than for children without a family history.  Overall, the risk of developing T1D among children with a first-degree relative who has T1D is about 5 in 100.  However, we know that having specific genes can further increase the risk of developing type 1 diabetes. 

In the PROMISE study, we are using a research test called a ‘genetic risk score’.  This test looks at 67 genes associated with T1D.  We can use this test to see if your baby has a higher risk of developing T1D than others who also have a first-degree relative with T1D.

High Risk

If your baby has a higher risk of developing T1D than others (the highest 10%) based on this ‘genetic risk score’, his/her risk of developing clinical T1D is about 18 in 100.  This does not mean that your baby is definitely going to develop diabetes.  It means that out of 100 children, 18 will get T1D, and 82 will not.   

For babies who have genes that are associated with a higher risk of T1D, we would like to test the child’s blood for islet autoantibodies at 6, 12, 18, and 24 months of age and then again at 5-6 years of age.  The presence of islet autoantibodies is not diagnostic of clinical T1D, but children who have positive antibodies are at higher risk of developing clinical T1D.  If your child develops autoantibodies, you will be provided a report to share with your child’s physician, and you will be given instructions to monitor your child for abnormal glucose values.  If your child develops any symptoms of T1D, it is important to follow up with your child’s healthcare provider. 

Low Risk

If your baby has genes that indicate they are in the lowest 90 percent for risk of developing T1D, then they will be enrolled in our low-risk PROMISE study cohort. For these babies, his/her risk of developing clinical diabetes is about 2 in 100.  This does not mean that your child is definitely going to develop T1D.  It means that out of 100 children, 2 will get T1D, and 98 will not.   

For babies in the lower genetic risk group, we would like to test your child’s blood for autoantibodies at 24 months of age and again at 5-6 years of age.  If your child develops autoantibodies, you will be provided a report to share with your physician, and you will be given instructions to monitor your child for abnormal glucose values. If your child develops any symptoms of T1D, it is important to follow up with your child’s healthcare provider.