Type 1 Diabetes Screening Can Give Families More Time

Type 1 diabetes screening can provide time to prepare, find specialist care, and potentially seek treatment to delay its progression. But the topic is a personal one for parents who have type 1 and may raise difficult questions. 

A recent diaTribe webinar brought together experts and people with type 1 diabetes to share their experiences and stories about using screening to help avoid a diagnosis made during an emergency. Currently, more than 60% of children diagnosed with type 1 in the U.S. present with diabetic ketoacidosis (DKA), a potentially life-threatening complication.

The panel was co-moderated by Dr. Diana Isaacs, director of education and training in Diabetes Technology at the Cleveland Clinic, and Dr. Natalie Bellini, an endocrine nurse practitioner at University Hospitals and clinical assistant professor at Case Western Reserve University. They were joined by:

• Dr. Shara Bialo, a pediatric endocrinologist and senior medical director in type 1 diabetes immunology at Sanofi, who has type 1.
• Martha Butcher, a type 1 diabetes advocate and volunteer leader with Breakthrough T1D. Butcher has type 1 diabetes, and one of her daughters was identified with early-stage type 1 through screening. 

Together, they provided an overview of screening, along with the issues families face when deciding whether to test for type 1 and what to do after receiving the results. 

How type 1 screening works 

Type 1 screening is a blood test that looks for diabetes-related autoantibodies. The test identifies signs that the immune system has begun mistakenly attacking insulin-producing cells.

"I like to think about autoantibodies as the body’s check engine light," Bialo said. "The light tells you there’s something happening under the hood of your car. Autoantibodies tell us that there is an autoimmune process that has begun before there are symptoms – and potentially before a medical emergency happens.”

That early warning is possible because type 1 develops in stages. In stage 1, a person has two or more diabetes-related autoantibodies, but blood sugar remains normal. In stage 2, blood sugar has started to become elevated, but other symptoms may be absent. Stage 3 is when blood sugar rises enough to cause the symptoms most people associate with diagnosis – thirst, frequent urination, weight loss, and the need for insulin.

For families, that distinction can be hard to understand at first. A person can have type 1 diabetes before insulin is needed. But knowing early can change the experience of diagnosis.

“Screening doesn’t change the road ahead, but it turns on the headlights,” Bialo said.

Making the call to screen

Butcher has lived with type 1 diabetes for 35 years, and understood that her children had higher risk. Like many parents with type 1, she found herself watching for signs in her kids from a young age: an extra drink of water, another trip to the bathroom, or anything that might suggest the condition was present.

Later, after her daughter was diagnosed with celiac disease – autoimmune conditions can sometimes cluster in families – she decided to screen her two daughters for type 1 autoantibodies. 

But even after ordering the tests, she still hesitated to use them.

“This was a little bit scary. Do I really want to know? The kits sat in the house for a year,” Butcher said. Her husband asked why they would want to know something that might be coming in the future. She explained that if they didn't screen, they might miss the chance to avoid DKA.

Isaacs emphasized the point of avoiding DKA, a life-threatening condition. She also noted that being diagnosed in DKA can affect what comes next, including worse longer-term outcomes, making earlier identification an important goal.

'The gift of time'

When Butcher and her family did the screening, one of her daughters tested positive for autoantibodies and was later found to be in stage 2 type 1 diabetes.

The result was not what Butcher had expected. “It was really challenging, because I honestly didn’t think that was going to happen,” she said. But after the initial shock, she said the results allowed the family to more easily transition. "We got the gift of time."

That time mattered especially because her daughter sometimes had anxiety around needles and medical procedures. After the positive result, Butcher did not want to transfer her worries to her daughter. With the care team’s help, the family moved slowly. Her daughter wore a continuous glucose monitor (CGM) for 10 days so the care team could analyze blood sugar patterns and determine her stage.

Instead of explaining everything all at once, Butcher and her family offered her daughter information in small steps. They told her daughter the care team needed more information. Later, once they understood she was in stage 2, they worked with the pediatric endocrinologist on what might come next.

Had her daughter first been diagnosed in the hospital, Butcher said, the family would have been bombarded with information in a few days. The screening results led to a pace that felt like a better fit for her daughter, with time to learn from people in the diabetes community, ask questions, know other children with type 1, and build support before insulin was needed.

“The diagnosis is not going to change,” Butcher said. “It’s whether we’re proactive to it or reactive to it.”

Finding support – and making a plan

Bellini, who assisted Butcher in the transition, said that after receiving a positive result, families need a next step and a care team prepared to respond in a timely way.

"We got her in with the pediatric team right away," Bellini said. "That immediate referral back is what most centers that are screening appropriately are doing now."

That follow-up is especially important because screening results may arrive at different times. Bellini said programs and clinicians need to think through how families will be quickly supported after the call, not just how they will be tested.

The group also noted that screening can create anxiety. Bialo acknowledged the concern but said uncertainty carries its own worries – especially in families already managing type 1.

Screening may replace some of that uncertainty with a plan. After a positive result, Bialo said, the next steps usually include confirming the autoantibody result, assessing blood sugar to determine the stage, and connecting with a pediatric endocrinology team or another medical partner. Monitoring may include periodic glucose checks, office visits, and sometimes CGM use, depending on age and stage.

"Through this, you build confidence step by step," Bialo said. "It’s the difference between sipping from a glass and trying to drink from a fire hose. Early detection is the opportunity to learn and prepare before we are forced to have a crisis."

Expanding access to screening

The panel stressed that screening should not be limited only to families with a known type 1 history. Family history is an important place to start, but most children diagnosed with type 1 diabetes do not have a close relative with the disease.  

Bellini said broader awareness among pediatric clinicians of type 1 screening is an important next step. “If we screen at 2, 6, and 10, we catch about 80% of it," she said. 

Isaacs also pointed out that screening is not only a pediatric issue. Adults can develop type 1 diabetes, too. She described seeing a 63-year-old recently diagnosed with type 1 who wished screening had been offered earlier.

“We see a lot of adults who get diagnosed with type 1 diabetes," she said. "For family members and people with other autoimmune conditions, we can and should still be offering screening."

Living well with the results

After the results, Butcher’s daughter still does the things she's interested in, like playing sports.  

"My daughter is on a soccer team, and of course doing all these things, and I'm thinking 'Is she feeling okay?' But it doesn’t consume me. The other day she was a little shaky, and I asked, 'What do you want?' And she said, 'Let’s do a blood sugar test,' which is huge for my kid. It was great, actually. It gave me peace of mind," she said.

The biggest change is that her family is learning and preparing.

"It’s important to let them lead the way. We know it’s coming, but it’s not going to be DKA," Butcher said. She also suggested parents think about their situation and about what screening could give them: more anxiety or more time to prepare.

For Bialo, that shift helps change the situation from a potential crisis to an opportunity.  

“We’re no longer talking about only treating type 1 after it clinically develops,” she said. “We’re talking about early identification and changing how families experience this disease for the better.”

The bottom line 

Type 1 diabetes screening can raise difficult questions, especially for parents who already know what life with type 1 can involve. But experts and people with type 1 said early knowledge can transform the experience from reactive to proactive. Establishing type 1 diabetes risk may offer time to prepare, connect with care, and reduce the chance of a dangerous emergency diagnosis.

For families with a history of type 1 diabetes – or with autoimmune conditions that may increase risk – screening can offer a way to learn whether closer monitoring is needed. Additionally, a positive result does not always mean insulin is needed right away, especially in earlier stages of the condition, but it should lead to follow-up care, confirmatory testing, and guidance on what to watch for next.

You can find more information about type 1 screening here, as well as access to free screenings in the U.S. through programs like TrialNet and the ASK Research Program.

Learn more about type 1 screening here:

• Early Diabetes Screening in Kids Can Improve Quality of Life
• Type 1 Diabetes: It's Time for Population-Wide Screening
• New International Recommendations on Monitoring for Type 1 Diabetes