What is CanCHECK-T1D?
CanCHECK‑T1D is a Canadian pilot program created by the CanScreen T1D research team – a group of researchers, clinicians, community partners, advisors, and other members dedicated to advancing type 1 diabetes (T1D) risk screening in Canada. Together, we are building a free and accessible screening program that helps families learn whether their baby or child might be at risk of developing T1D in the future.
Our mission is simple: to make early type 1 diabetes risk screening available to every child in Canada in a way that is easy to access, fair for all families, and safe. Enrolment is now open, and we are excited to welcome your family into this important initiative.
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What is Type 1 Diabetes?
T1D is one of the most common chronic childhood conditions, and Canada ranks in the top 10 countries in the number of cases. It is not caused by eating sugar or by anything a child, or their parents, did.
T1D is a condition where the body’s immune system mistakenly attacks the cells that make insulin. Insulin is a hormone that helps move sugar from the blood into our cells for energy. People with T1D rely on daily external insulin to stay healthy and manage their blood sugar levels.
Without insulin, sugar builds up in the blood to dangerous levels. This can lead to a life-threatening condition called diabetic ketoacidosis (DKA). In Canada, 19-25% of children with T1D are not diagnosed until they develop DKA. Visit our Frequently Asked Questions (FAQs) to learn more about T1D.
A cherished family photo of our CanScreen T1D community partner, Vanessa, with her parents. Vanessa was diagnosed with T1D at the young age of one.
[Name of Community Partner], his wife, [Name], and their four-year old son.
Why Is Screening for Type 1 Diabetes Risk Important?
T1D often appears without warning. About 85-90% of those diagnosed have no family history, even though having a close relative does increase risk. The good news is that the risk can be detected early, long before symptoms begin, through two types of screening:
Genetic Risk Score (GRS)
A few of us are born with genes that make us more likely to develop T1D. CanCHECK-T1D looks for these specific genetic markers in babies to understand their risk of developing T1D someday.
Autoantibody Testing (AB)
In T1D, the immune system mistakenly targets the insulin producing cells. As this begins, the body creates early warning signals called autoantibodies. These can be detected in children months, even years, before any symptoms appear.
Why Early Screening Matters
T1D develops in three stages, and during the first two stages children usually feel completely well even though the immune process has already started and autoantibodies are found in their blood. Without screening, most families do not know anything is wrong until symptoms suddenly appear, sometimes leading to serious health emergencies.
Screening helps by:
- Identifying risk early, before symptoms begin.
- Reducing the chance of severe complications at diagnosis.
- Giving families time to learn, prepare, and access monitoring support and therapies to delay a potential diagnosis.
Early knowledge empowers families and can make a meaningful difference in a child’s health journey.
Who Can Enrol in the CanCHECK-T1D Screening Program?
CanCHECK‑T1D includes two separate screening pathways: the Genetic Risk Score (GRS) arm and the Autoantibody Testing (AB) arm. Your child’s age at enrolment in our program determines which pathway they join, and each child participates in only one pathway.
What Does Type 1 Diabetes Risk Screening Involve?
Participation in the CanCHECK-T1D screening program is free and easy!
Genetic Risk Score (GRS) Arm
We will use the same blood sample already collected through your baby’s routine newborn screening at birth. Everything we need is already in place. With your permission, we can complete the T1D risk screening.
Most babies will not be at an increased genetic risk and will not need to continue in the program. But if your baby is at increased risk, we will provide educational resources, genetic counseling support, and offer autoantibody testing every year. Even with these extra steps, your child will stay in the GRS arm.
Click here to explore the GRS arm participant journey and learn what to expect at each milestone.
Our CanScreen T1D community partner, Tzipi, and her daughter, Haley.
Autoantibody Testing (AB) Arm
Autoantibody testing is usually done using a blood sample, which can often be collected with a quick and simple finger prick. We will send you a home collection kit and instructions on how to poke your child’s finger, spot a paper test, and mail us back the dried blood spot sample.
If your child’s screening shows autoantibodies, we will make sure you have clear information and invite you to confirm the result with a follow‑up test at a laboratory close to home.
In most cases, children will not have autoantibodies. Because autoantibodies can develop at any age, we will invite you to repeat the home‑based screening every year until the end of our study.
Click here to explore the AB arm participant journey and learn what to expect at each milestone.
How Do I Enrol My Child in the CanCHECK‑T1D Program?
Do You Have Questions or Need Help Deciding Whether to Enrol Your Child?
We understand that enroling your child in a screening program is an important decision. Our team is here to support you with clear information, so you always know what to expect. If you have questions or need more details, these resources are available to assist you:
Need more information on the GRS or AB arm?
Click here to view our Genetic Risk Score (GRS) arm participant journey or our Autoantibody Testing (AB) arm participant journey to help you visualize the overall pathway. Depending on your child’s test result, this pathway may look slightly different for each family.
Still have questions? Visit our Frequently Asked Questions (FAQs) to see if the information you need is already there.
Need support deciding whether to enrol your child?
We have created an interactive online decision aid to help you decide whether screening is the right choice for your child. Using it is completely voluntary, and your responses are not recorded. It is designed to provide information about T1D risk screening and support conversations within your family or with your healthcare provider so you can make a decision that feels right for you.
You can find the decision aid for the Genetic Risk Score (GRS) arm and the Autoantibody Testing (AB) arm on their individual registration pages.
Need more information on type 1 diabetes?
Visit our Frequently Asked Questions (FAQs) to learn more about T1D. You can also check out these easy reads from Breakthrough T1D:
Prefer to chat with a member of our team?
You can call us at +1‑xxx‑xxx‑xxxx to speak with our study coordinator, John Doe, Monday to Friday, from 9:00 A.M. to 4:00 P.M. ET. You can also email them at djohn@cheo.on.ca.
You can also fill out our inquiry form below, and we will respond as soon as we can.