Introducing Universal Screening for Type 1 Diabetes (and Survey for all Mothers of a Child 18 years or Younger)

Some of you have told me how you wish you’d known you were at risk of developing the chronic illness you live with so that you might have had the opportunity to do something about it – whether to try to prevent it or get help to decrease the risk or delay onset. A new screening test is now recommended worldwide for everyone, of all ages, to assess for risk of type 1 diabetes (T1D) ⁽¹⁾Phillip et al, (2024, Aug 1). Consensus Guidance for Monitoring Individuals With Islet Autoantibody-Positive Pre-Stage 3 Type 1 Diabetes. Diabetes Care, 47(8), 1276-1298. T1D is the autoimmune form of diabetes and one of the more common autoimmune diseases, especially from childhood to young adulthood. Rates of T1D have been increasing worldwide in the last few decades ⁽²⁾Bell, K. J., & Lain, S. J. (2025). The Changing Epidemiology of Type 1 Diabetes: A Global Perspective. Diabetes, Obesity and Metabolism, 27(S6), 3-14.

Antibodies related to autoimmune diseases can arise 5 or 10 or more years before onset. The new recommendation is to screen yourself for diabetes-related antibodies to gain as much time as possible prior to diagnosis or to learn of the diagnosis of T1D early to optimize treatment and management.

This recommendation for Universal Screening for type 1 diabetes has been made by a large collaborating group of researchers and clinicians around the world who want to help and better understand, treat and eventually prevent type 1 diabetes. They are at the early stages of getting this massive screening project underway starting in 2024-2025 and are figuring out how to support people and health professionals to learn about the new insights and knowledge from their decades of studying T1D.

Why get screened for type 1 diabetes?

About 2 million people live with type 1 diabetes in the USA and over 9 million worldwide. Although about half of T1D is diagnosed in adults, the other 50% of diagnosis is in children and adolescents. Children can develop T1D even before turning 1 year old (more on wikipedia).

Screening is recommended for all age groups, regardless of whether or not you have a family history or a family member with type 1 diabetes.

Universal Screening for type 1 diabetes is being recommended for the following reasons:

1. Prevent DKA (which can be life threatening) and reduces severity of T1D

A primary goal for recommending Universal Screening for T1D is to prevent DKA.

DKA – diabetic ketoacidosis – arises as the result of low insulin levels, which can make the body switch to burning fatty acids instead of using sugar as fuel. This produces acidic ketone bodies and can cause the state known as diabetic ketoacidosis (DKA) in which lead to confusion, drowsiness, or even coma along with other severe symptoms that can require intensive care. DKA can be life-threatening.

The onset of type 1 diabetes can be subtle and go unrecognized for a period of time. Symptoms can also shift quite suddenly, in people of all ages, when blood sugars spike. This is how DKA can occur unexpectedly.

In individuals who develop T1D without experiencing DKA, the body has been found to have more ease in maintaining blood sugar levels with the help of insulin and to have fewer complications in the long-term experience of living with type 1 diabetes. This is a big win for people who develop T1D and a critical reason for screening for everyone.

People who screen positive for diabetes-related antibodies have time to learn about symptoms to look for that are the first indications of progression towards the need for insulin. Testing blood sugars is a way to tell if there is progression to full blown T1D and can often be done at home as well as easily done at the doctor’s office or in urgent care.

• In the US 41% to 60% of people with T1D are diagnosed in DKA ⁽³⁾Data from 2012 in Rewers A. JAMA 2015; data from 2017 in Alonso G. Diabetes Care 2020.
• In contrast, DKA occurred in only 4.5% of those screened for T1D who knew they were at risk and learned about what to look for to prevent DKA ⁽⁴⁾data from 2017-2024 in Rewers M. EASD 2024.

Symptoms of DKA to look for and that should be assessed quickly include:

• Intense thirst, dry mouth, frequent urination
• Nausea, vomiting, abdominal pain
• Fruity-smelling breath
• Rapid, deep breathing (Kussmaul breathing)
• Extreme tiredness or weakness
• change in consciousness (drowsiness, confusion or losing consciousness)

2. Screen to delay onset

Tzield (teplizumab) is a recently available treatment that can delay onset of type 1 diabetes. Criteria for Tzield are being 8 years old or older with two or more antibodies and the beginning of abnormal blood sugar levels along with other specific indications. This is now known as stage 2 type 1 diabetes. Tzield slows the progression from stage 2 to stage 3 type 1 diabetes in which insulin is needed.

3. Screen your child so as a parent you can be more prepared to help

From Ariadne labs, “For most children with type 1 diabetes, diagnosis occurs only after a serious medical event. Warning signs can be subtle and easy to miss until they become severe, and many children are only diagnosed once admitted to the hospital already in diabetic ketoacidosis, a life-threatening complication. Caregivers and children alike are instantly thrust into an overwhelming new role learning to check blood sugars, give insulin, monitor diet, and more.”

Screening can help parents and other caregivers be informed and better prepared to help their child manage an chronic illness that is lifelong.

4. Opportunities for prevention – might healing trauma help?

4.1 No prevention yet. Research is active. The most powerful reason to screen for the presence of a chronic illness like type 1 diabetes is to be able to catch it early so you can prevent it. No treatments yet exist for prevention of T1D although research is actively looking both for prevention and for a cure.

4.2 Trauma is a risk factor. Might healing trauma help with prevention? The role of trauma has been studied quite a bit in T1D including the finding that adverse childhood experiences (ACEs) are a risk factor ⁽⁵⁾Dube, S. R., Fairweather, D., Pearson, W. S., Felitti, V. J., Anda, R. F., & Croft, J. B. (2009, Feb). Cumulative childhood stress and autoimmune diseases in adults. Psychosomatic Medicine, 71(2), 243-250. A detailed Swedish ABIS study followed 10,000 people from the general public for 14 years ⁽⁶⁾Nygren, M., Carstensen, J., Koch, F., Ludvigsson, J., & Frostell, A. (2015, Apr 14). Experience of a serious life event increases the risk for childhood type 1 diabetes: the ABIS population-based prospective cohort study. Diabetologia, 58(6), 1188-1197. They found that adverse experiences influenced risk for antibody development and progression to T1D at all stages of life, including with maternal experiences of adversity during pregnancy and throughout a child’s and family’s life until diagnosis. The role of trauma is not yet well recognized in research or clinical care although the associations between adverse experiences and T1D suggest that working to heal and address trauma in early stages of T1D might be important. Effects of healing trauma need to be studied as a possible route to risk reduction, prevention or delaying of onset of T1D. In the meantime, if you learn that you have antibodies for T1D, healing and working with trauma could be a valuable approach to learn about and explore.

4.3 Our T1D survey asks mothers about your child’s early experiences. I am conducting a study of type 1 diabetes in children with a colleague. The survey is the first phase of our study to learn if we assess a gentle, non-invasive treatment and if it can prevent or delay onset of T1D in young children with early stages of T1D. We’ve recently updated the survey and now invite all mothers of a child 18 years or younger to take our quick 15-minute online survey. Your child may live with T1D, autoantibodies, other chronic health conditions or no chronic health conditions. You can learn more about us and our study here or start the survey by clicking the button below. Our study is approved by an ethics committee and institutional review board (IRB).

Why not get screened for type 1 diabetes?

Screening is an option and for some people it is not a fit. Reasons for not getting screened include:

• it can be stressful to know we are risk for a chronic illness
• it can be stressful not knowing if we will progress or when it could happen
• having antibodies may be seen as a pre-existing condition that could affect coverage such as life insurance and health insurance
• inconvenience

Who especially should get screened for T1D?

While Universal Screening for type 1 diabetes means that everyone of all ages is invited to screen for T1D-related antibodies, there are some groups of people at higher risk for whom it may be especially helpful. These groups include the following:

T1D in the family

T1D is 15 times more common if someone in your family has T1D, whether a sibling or parent, or a cousin, aunt, uncle or grandparent.

On the other hand, 90% of people who develop T1D have no family history, and this is part of why the screening is recommended for everyone.

Routine screening for all children

T1D is one of the more common chronic conditions in children and young adults. About half of T1D diagnoses are in children and teens, including in children as young as 1 year old or younger. Children tend to progress more quickly from having antibodies to developing T1D needing insulin. Routine screening for antibodies is now recommended to be part of regular check ups for all kids. Doctors and other health professionals are still learning about the new recommendation for Universal Screening for type 1 diabetes and yours may not yet know about it. You and your health professionals can learn more on the Autoimmune Study in Kids (ASK) .

The recommended windows of time for screening in childhood are as follows:

• 1-3 years of age
• 4-6 years
• 9 to 11 years

You have an autoimmune disease

Having one autoimmune disease is associated with a higher chance of having or developing another. If you have an autoimmune condition it could be helpful to get screened for T1D.

What it means if you have T1D antibodies

If you test positive for antibodies. The screening test looks for the presence of any of 5 antibodies related to T1D. If you have autoantibodies it will be recommended that you get another test to confirm the first one. If you do not have high blood sugars indicating the need for insulin, the results provide an opportunity for treatment to delay progression in some instances, learn about T1D, and get informed about symptoms to watch for that indicate progression. There are ways to monitor for progression and you will receive guidance for next steps by the screening organization. Their website has a wealth of information.

What is T1D. Type 1 diabetes is associated with high blood sugar levels that the body cannot keep in the normal range without external doses of insulin such as from the use of insulin injections or an insulin pump. Most people with T1D have antibodies in the period of time before diagnosis.

What antibodies do. The 5 different kinds of antibodies used in screening are believed to cause the destruction of insulin-producing cells in the pancreas, leading to low levels of insulin within the body that cause blood sugar levels to rise. The presence of antibodies in the face of high blood sugar levels helps confirm the diagnosis of type 1 diabetes.

Antibodies can arise a long time before onset. Antibodies associated with type 1 diabetes can arise years before the onset of the disease. While no preventive treatment has yet been identified, a treatment is available that can delay onset for some individuals. Researchers are actively looking into options for prevention as well as a cure.

Early stage T1D. Having 2 or more antibodies that persist on more than one blood test is an early stage of type 1 diabetes.

Risk of progressing to the need for insulin. Having two or more antibodies means an almost 100% chance of eventually progressing to the autoimmune disease requiring insulin at some point in life.

Having 1 antibody. Having one antibody related to type 1 diabetes is associated with some increased risk of progressing to type 1 diabetes, but many people with a single antibody never develop the disease. The role of a single antibody and what it means for risk is not yet understood.

Healing trauma. Working to heal trauma, which has been found to be a risk factor for T1D at all stages of life, may be a powerful tool to learn about and utilize if you screen positive for autoantibodies or for having type 1 diabetes needing insulin.

Type 1 diabetes is a 3 stage disease

Stage 3 type 1 diabetes is the new term for what we now know of as type 1 diabetes associated with high blood sugars and the need for insulin.

There are two earlier stages that have been identified and that occur before stage 3 T1D. These early stages can be present for months or years.

Having two or more antibodies and no need for insulin is associated with stage 1 and stage 2 type 1 diabetes:

• Stage 1: 2 or more antibodies for T1D and normal blood sugars
• Stage 2: 2 or more antibodies for T1D, blood sugars are higher than normal.
• Stage 3: high blood sugar levels require insulin for management

What if I learn that I have T1D antibodies?

If you learn that you have one or more type 1 diabetes-related autoantibodies, the testing service will provide guidance about next steps.

Ask the Experts is a website specifically designed to help health professionals and individuals & families learn more and provides resources, tools and detailed information such as billing information and medical coding for screening. The resources and tools available for health professionals may be useful for many of you who have screened positive for antibodies even if you are not health professionals.

Having autoantibodies for T1D or T1D may qualify you to be in a research study.

Free screening covers the cost of the screening test and results. The cost of other testing or care may be something your insurance or you have to cover.

Guidelines for health professionals

If you are a health professional interested in guidelines for screening clients and patients, or if you are someone else with special interest in learning more, see these 3 resources:

• The Consensus Guidance from 2024 about the research leading to this decision for Universal screening ⁽⁷⁾Phillip et al, (2024, Aug 1). Consensus Guidance for Monitoring Individuals With Islet Autoantibody-Positive Pre-Stage 3 Type 1 Diabetes. Diabetes Care, 47(8), 1276-1298
• Establishing Screening Programs from 2025 for the most recent clinical guidelines ⁽⁸⁾Leichter, S., Felton, J., Rasmussen, C., Rizzuto, P., Bellini, N., Ebekozien, O., & Schulman-Rosenbaum, R. (2025, 04/02). Establishing Screening Programs for Presymptomatic Type 1 Diabetes: Practical Guidance for Diabetes Care Providers. The Journal of clinical endocrinology and metabolism.
• Ask the Experts is a website and a group of people specifically designed to help health professionals and individuals & families learn more about Universal Screening for type 1 diabetes, guidelines for next steps, and provide access to early interventions. The site includes downloadable resources, tools.

Where to get screened around the world

Free T1D screening for all ages in the USA with or without family history

Autoimmunity Study in Kids (ASK) is a research study that now offers free screening for T1D for all ages from infancy to adulthood. ASK is part of a collaboration between the University of Colorado Anchutz campus and the Barbara Davis Center, a world-renowned T1D clinic and research center in Denver, Colorado.

• All ages
• You do not need to have a family member with T1D to screen with ASK.
• ASK screens in Colorado AND across the US. Start your request to screen here.
• ASK screens simultaneously for celiac disease, which is one of the most common autoimmune conditions in children and often co-occurs with T1D.
• Learn about the different ways you can get screened, such as at your local lab or with a home test kit finger prick.
  • A video description is provided to see what testing at home consists of with a finger prick should you want to use that method.
• Start the process to get screened by clicking the “econsent” for adults or children, and to set up the way you want to get screened.

Areas around the world offering T1D screening – most are free

• Kids and Adults in the USA: ASK
• Adults in UK: adults in the UK (T1DRA – type 1 diabetes in adults)
• Kids in England and Wales: 3 to 13 years old (ELSA)
• Children in Germany (Fr1da)
• Screening elsewhere in Europe
• Australia for 2 years old or older with family member with T1D (Type1Screen)
• Inquire about other areas for screening in Europe with EDENT1FI (European Action for the Diagnosis of Early Non-clinical Type 1 diabetes For disease Interception)
• Canada with TrialNet and UncoverT1D if a family member has T1D
• Screening elsewhere around the world if a family member has T1D (TrialNet)

Mothers of kids 18 or younger needed for our survey about T1D

If you didn’t read about it above, I am conducting a study of type 1 diabetes with the goal of assessing a brief non-invasive treatment with colleague Tony Madrid, PhD. We wonder if this intervention can prevent or delay onset of T1D in young children with stage 1 T1D (two or more antibodies and normal blood sugars).

We’ve updated the survey and now welcome all mothers of a child who is

• 18 years old or younger with any state of health

Your child may be living with T1D or any other state of health including chronic conditions and no chronic conditions.

What do you have to do? Take our quick 15-minute online survey.

Goal. Our goal is to learn if there are differences in early experiences during pregnancy, labor, birth and a child’s first few years between mothers of children with T1D and mothers of children with no chronic health conditions.

Analysis and follow up. We will contact you once we have enough responses to analyze the data to let you know of our findings and next steps.

Your responses for children with chronic health conditions other than T1D will help us learn more about the potential role of early experiences with other health challenges as well and may inform future research.

You can start the survey on this page or click the button below to begin:

We are members of a nonprofit and our study is IRB approved (an institutional review board and ethics committee). You can learn more about us and the study here.