Autoimmunity Screening for Kids (ASK) Program

Type 1 diabetes (T1D) screening, monitoring, and intervention are becoming increasingly more prevalent globally. Media campaigns like Sanofi’s The 1 Pledge promote how easy it is to be screened through research programs like ASK and TrialNet. One may ask why this hasn’t always been the case.

Patricia Gesualdo, RN, MSPH, has spent over 20 years in type 1 diabetes and makes the case for early T1D screening. While Gesualdo does not have a personal connection with T1D like many of her colleagues at the Barbara Davis Center, her background in pediatric emergency nursing exposed her to the devastating consequences of undiagnosed type 1 diabetes. “In the ED, children with T1D were usually in DKA (diabetic ketoacidosis). I didn’t know that children could be happy and healthy in the early stages of type 1 diabetes and that their parents wouldn’t even know it,” she said.  

The Origins of ASK

Autoimmunity Screening for Kids (ASK), a general population study started in 2017, offers type 1 diabetes and celiac disease screening for children at no cost.  ASK provides a variety of approaches to get screened, including an at-home test kit to detect T1D in its earliest stages before symptoms appear.

TrialNet, the international network of T1D researchers, began in 2006 and targets anyone with a family history of T1D. “That leaves out a pretty significant part of the population,” said Gesualdo, “Because 90% of people diagnosed with T1D do not have a family history.”

“Dr. Rewers and our study group started the ASK study to fill that gap, offering screening for T1D to all children with and without a family history in the general population,” Gesualdo said. “Our mission has been to bring awareness to the community of the importance of early detection and to reduce the health risks of delayed diagnosis.” 

Benefits of T1D Screening

Some reasons to screen for early onset T1D are:

• To avoid life-threatening diabetic ketoacidosis,
• To better prepare families psychologically and financially,
• To offer the option to learn about prevention trials and FDA-approved therapies like Tzeild that may delay the onset of type 1 diabetes.

Beyond these reasons, Gesualdo said it’s important to consider the direct benefit for parents and their children. “When we know children have autoantibodies and are in the early stage of type 1 diabetes, we can educate families and monitor them very closely—the diagnosis looks much different from a family who has not participated in screening.”   

An additional benefit of early diagnosis is that it can lead to better outcomes long term. “The longer a person can continue to produce their own insulin, the better off they’re going to be since early diagnosis can lead to better blood sugar control, lower insulin requirements, and less risk of long-term complications.”

Why does ASK also test for Celiac Disease?

ASK is the only research study in the US that tests for both T1D and celiac disease. Gesualdo said the reason is because these are the two most common autoimmune diseases in kids. “It is not uncommon for children that have type 1 to have celiac disease too.”

Gesualdo reports that parents often agree to participate in ASK because of the screening for celiac disease: “They are more concerned about celiac disease than T1D, but we’ve embraced that; we are just glad that families agree to participate in the screening.”

The Process to Participate in the ASK Study is Simple

Families who are interested should follow these steps:

1. Visit the website at www.askhealth.org to learn how and where to participate in ASK.
2. Complete the online consent form. The study team will contact you directly to answer any questions and discuss how your child can get screened. 
3. Schedule an appointment at the Barbara Davis Center or request a kit for a blood sample to be collected at home, a lab, or your doctor’s office.

Families participating in the ASK Study can expect results in about four to six weeks. For children who test negative, repeating the screening is advised. Children should be screened between the ages of 1-3 years, at 4-6 years, and again between the ages of 9-11 years. If there is a family history of T1D or if the child has a different autoimmune disease, more frequent screening should be considered.  

“A child whose test is negative at four, should be tested again between 9-11 years.  If the result is negative again at 10 years, the risk for T1D is pretty low,” Gesualdo said.

What to Do if You Test Positive for T1D?

When a child tests positive for the T1D autoantibodies at screening, it is important for another blood sample to be collected to confirm the result. Additional testing of a hemoglobin A1c and blood glucose check and evaluating early signs/symptoms will help determine the child’s current stage of T1D. 

The most serious consequence of T1D at diagnosis is DKA, a life-threatening complication that, if left untreated, can lead to a coma or death.

Families in Colorado are offered a follow-up study through ASK so families can be educated on the early signs of T1D, and children can be monitored closely for the early signs. The ASK program will connect families outside of Colorado with another program called Ask the Experts.

With close monitoring through ASK, a child’s disease progression can be tracked very closely over time.  Families can be connected to TrialNet to learn about available clinical trials.

Ask the Experts

Families whose child tests positive and live outside of Colorado can find additional resources through the Ask the Experts program, which will help locate a local provider in the family’s home state. Additionally, Ask the Experts offers helpful resources for healthcare providers to be able to monitor their patients in the early stages of T1D.

“It’s important for these children to be monitored over time because we want to keep them safe and out of the hospital,” Gesualdo said. “Sometimes families need additional support and monitoring tools like a glucometer or continuous glucose monitor (CGM), so the ASK the Experts program can provide those, while preparing local providers with the knowledge of how to interpret the results.

Ask the Experts can help with questions, interpreting screening results, or determining a follow-up plan. Email Questions@AsktheExperts.org or call (303) 724-1212 to speak with an Ask the Experts team member.

Better Health Outcomes

Screening for type 1 diabetes allows for early detection, reducing serious health risks and improving long-term management. Additionally, opportunities to participate in research studies exploring potential disease-modifying therapies and preventative treatments for the disease may turn a setback into a success.