Survey: 2/3 of Parents Unaware that Type 1 Diabetes is Identifiable Before Symptoms (

PR Newswire

Diabetes patient advocacy groups unite to educate on how type 1 diabetes screening can help reduce life-threatening complications and improve outcomes

WASHINGTON, Dec. 7, 2023 /PRNewswire/ -- A new national survey commissioned by the Diabetes Leadership Council (DLC) found that nearly 2/3 (62%) of parents are unaware that type 1 diabetes (T1D) can be identified before symptoms occur. The findings come at a time when T1D is typically diagnosed in the final of three stages when a person begins experiencing symptoms, blood sugar is high, and insulin dependence begins.

"For many families, T1D can be an unexpected and scary diagnosis that is prompted by a life-threatening complication," said George Huntley, CEO of the Diabetes Leadership Council. "There's a real opportunity to change that experience by reaching out to those at risk about the potential to screen for T1D so that families can better manage and plan for a potential diagnosis."

T1D is a lifelong autoimmune disease that attacks healthy cells in the body needed to regulate blood sugar. It affects people of all ages, but is most often diagnosed in children, teens, and young adults. Unlike other types of diabetes, it cannot be prevented, and risk is not impacted by lifestyle or dietary changes. The highest risk factor for developing T1D is family history, which increases risk by up to 15 times, however it is noteworthy that 80% of people who are newly diagnosed have no family history.

In DLC's online survey of 1,000 parents of children aged 17 and younger, findings indicate that parents may misunderstand T1D risk and are unaware of screening options to identify risk early. Importantly, parents said they would be interested in screening options that would help improve their child's outcome if diagnosed with T1D.

Notable survey findings include:

  • Sixty-six percent (66%), or two-thirds of parents, incorrectly believe that unhealthy eating habits increase risk for T1D.

  • Only one-third (38%) of parents surveyed are aware that risk for T1D can be identified before experiencing symptoms.

  • More than half of all parents surveyed said that they would proactively have their child screened for T1D if they knew it could reduce the risk of life-threatening complication (55%) or could help them before the diagnosis of T1D (52%).

"The survey findings demonstrate the need to continue to educate families about screening options that can help improve the path of T1D," added George Huntley. "When a person's risk is identified earlier, they are much better prepared for the future and can potentially participate in research trials. By enabling early intervention, monitoring, and management, screening can also reduce the incidence of diabetic ketoacidosis (DKA), a serious complication of T1D, by 50% in people who are newly diagnosed."

The importance of screening is reinforced by the rising incidence of T1D. In the U.S., there are approximately 1.84 million people with T1D, with an expected increase to 2.1 million people by 2040. The disease is growing in younger populations – by 2050, 600,000 people under the age of 20 are expected to have T1D.

In response to this need, leading diabetes patient advocacy groups have come together through the Getting Ahead of Type 1 initiative to raise awareness of T1D screening and share resources and tools to help families better manage and plan for a potential diagnosis.

There are several options for T1D autoantibody screening – all done through a blood test. Parents should talk with their family doctor about screening options to learn which option may be right for them. To learn more about T1D screening and access resources, visit

About Diabetes Leadership Council
The Diabetes Leadership Council is a 501(c)(3) patient advocacy organization comprised of individuals who combine their passion for advocacy with decades of diabetes experience and leadership to advance patients-first policies at the local, state, and national levels. Our members – all former leaders of national diabetes organizations – engage policymakers, and public and private sector influencers to call attention to the diabetes epidemic and provide a voice for 37 million Americans living with the disease.

Media Contact:
Moira Murphy
(856) 889-9406