5 Reasons to Get Screened for Type 1 Diabetes


If you have a relative with type 1 diabetes, you may be at higher risk of developing the disease, making it imperative that you get screened. TrialNet (The Pathway to Prevention Study) is a free and simple blood test that determines your risk of developing type 1 diabetes before symptoms occur. Not only are there significant benefits to early detection, including extending the life of beta cells and reducing complications, but as undiagnosed type 1 can be fatal, screening saves lives. More than just knowing whether or not you are at risk, here are five of the biggest benefits of early detection that could improve your health and the health of others who are at risk.

TrialNet offers screening for the following:

  • If you have a parent, sibling or child with type 1 diabetes and are between the ages of 1 – 45
  • If you have an aunt/uncle, cousin, grandparent, niece/nephew, or half-sibling with type 1 diabetes and are between the ages of 1 – 20

Testing is done at a TrialNet location or you can opt to have a screening kit sent to your home.

Screening for kids and adults without a family history of type 1 is not widely available in the United States, with the exception of The Autoimmunity Screening for Kids study (ASK), which is screening children in the Denver metro area. More screening is necessary, given 90 percent of people diagnosed with type 1 diabetes do not have a relative with the disease.

The Top 5 Reasons to Get Screened

1 – Detect type 1 diabetes (T1D) early

We can now predict who will develop T1D by looking for markers called islet autoantibodies in blood. We measure four markers. If two or more of these markers are positive, the risk of developing  T1D in five years is 50 percent and the lifetime risk of developing T1D is almost 100 percent. Being able to measure markers of T1D is important because T1D can now be diagnosed before a person has increased urination, increased thirst or weight loss. Having markers of T1D in blood with normal blood sugars and no symptoms is now classified as “stage 1” T1D by leading diabetes societies. (Insel et al., Diabetes Care, 2015)

2 – Reduce the risk of diabetic ketoacidosis (DKA)

Across the world an unacceptably high number (10-80 percent) of newly diagnosed individuals with T1D present to the hospital in DKA. DKA is dangerous because it can lead to brain swelling and even death. Recent research indicates that DKA may alter the structure of the brain and lead to impaired memory and cognition. When people are screened for T1D and followed over time, the risk of DKA is significantly reduced.

  • The Diabetes Autoimmunity Study in the Young (DAISY) in the United States: DAISY follows children at high risk for T1D based on family history or high risk genes. Only 3.3 percent of children who screened positive for T1D and were followed in DAISY required hospitalization at diagnosis compared to 44 percent of children who had not been screened. (Barker et al., Diabetes Care, 2004)
  • BABYDIAB in Germany: BABYDIAB screens and follows children of relatives who have T1D. Only 3.3 percent of BABYDIAB participants presented in DKA at diagnosis compared to 29.1 percent of children in the community. (Winkler et al., Pediatric Diabetes, 2011)
  • The Environmental Determinants of Diabetes in the Young (TEDDY): TEDDY is an international study that follows children at high genetic risk. TEDDY had significantly reduced rates of DKA in children under 2 when compared to children in the community (15 percent vs. 39.5-54 percent). The incidence of DKA in the first 100 children who screened positive for T1D and were followed to T1D diagnosis in TEDDY was only 8 percent (Elding Larsson et al., Diabetes Care, 2011).
  • The Finnish T1D Prediction and Prevention (DIPP) Study in Finland: DIPP follows children at high genetic risk. Only 5 percent of children who screened positive and were followed presented in DKA compared to 18.5 percent in the community (Hekkala et al., Pediatric Diabetes, 2017).

3 – Better long-term blood sugar management and reduced complications

Laying the groundwork for good blood sugar control starts with preventing DKA at diagnosis. Children with DKA at diagnosis have persistently higher HbA1c levels than children who are not in DKA at diagnosis. Children with severe DKA had a HbA1c 1.4% higher, and children with mild or moderate DKA had a HbA1c 0.9% higher. The effect of DKA at diagnosis on long-term blood sugar control is more important that socioeconomic status or lack of health insurance. Importantly, the Diabetes Control and Complications Trial (DCCT) showed that the risk of diabetes eye complications (retinopathy) is directly related to HbA1c levels. A HbA1c 1.4% lower that occurs by avoiding DKA translates to a 50 percent reduced risk of retinopathy (Duca et al., Diabetes Care, 2017).

4 – Participate in prevention trials (help physicians and scientists learn more about T1D, how to prevent T1D and how to cure T1D)

We do not have a way to prevent T1D yet, but with the participation of islet autoantibody positive individuals in prevention trials, we keep learning and getting closer to finding a prevention and cure! Current opportunities for prevention trials can be found at clinicaltrials.gov and include studies run by TrialNet.

5 – Keep beta cells making insulin for longer

Several treatments given to people newly diagnosed with T1D as part of clinical research trials have delayed the loss of c-peptide. C-peptide breaks off of insulin that your own body makes, so it is a marker of insulin made from your own beta cells (endogenous insulin production). Abatacept, Anti-CD3/Teplizumab, Rituximab and Antithymocyte Globulin (ATG) have all preserved c-peptide production in people with newly diagnosed T1D. These are all drugs that target the immune system. Abatacept delayed the loss of c-peptide by 9.6 months and Rituximab by 8.2 months. Once individuals started to lose c-peptide, they did not lose it at a faster rate and continued to have better endogenous insulin production for at least two years after treatment compared to people who did not receive any drug.

The one-year follow-up results for ATG were presented at the American Diabetes Association Scientific Session this June. Excitingly, at one-year c-peptide had not yet declined. ATG was well tolerated and worked as expected by decreasing the number of CD4+ T-cells (the cells that cause inflammation and destruction of beta cells). Results were published in Diabetes Care, and two-year follow-up data will be analyzed this Fall.

Read more on TrialNet.


WRITTEN BY Kimber Simmons, POSTED 07/18/18, UPDATED 10/27/22

Kimber Simmons (MD, MS) is an assistant professor of Pediatrics at the Barbara Davis Center for Diabetes in Aurora, CO. She takes care of children with type 1 diabetes (T1D) and other endocrinologic disorders. She has lived with T1D since she was 8 years old and is passionate about educating families and the community about T1D. As a child, she prayed every night for a cure for T1D, and now she spends much of her time conducting research with the goal of contributing to the prevention of and ultimately a cure for T1D! She is involved in efforts to identify children who have T1D early, before they develop symptoms, and is an active investigator in many prevention trials, including those run by TrialNet.