Currently, the diagnosis of type 1 diabetes (T1D) typically happens as an emergency at the hospital during a dangerous high blood sugar event called diabetic ketoacidosis which can lead to an intensive care unit admission. This hospitalization can cause significant physical and mental strain, and after this initial shock, the person living with new onset T1D must learn the basics of diabetes management in a few days under major stress.
Screening is a strategy to identify people at high risk for developing T1D before diagnosis; it can avoid hospitalization and provide time for early and progressive support on glucose surveillance, insulin administration, and considering T1D delaying medication before blood sugar rises to the level of requiring insulin. Importantly, even for people considered high risk for T1D (e.g., have a close family member living with T1D) the vast majority (95%) will be found to have no increased risk of developing T1D compared to the general public.
How is screening done around the world?
T1D is an autoimmune disease with some known genetic risk factors and environmental triggers (e.g., some infections). The common screening method measures four self-targeting immune messengers called autoantibodies that reflect the ongoing attack on insulin producing cells. Using autoantibodies, three stages of early T1D are defined – stage 1: positive for 2+ autoantibodies with normal blood glucose, stage 2: positive for 2+ autoantibodies with slightly abnormal blood glucose, and stage 3: clinical T1D when insulin is mandatory.
Screening for T1D in Canada
Screening for individuals that may develop T1D is being progressively developed worldwide. In Canada, screening is starting through two pathways : 1) A research project focused on developing new therapies to delay T1D onset in children (https://www.trialnet.org/) and 2) projects focusing on screening feasibility and optimizing processes. FEDERATE CAN was recently launched in Montreal and screens adult first degree relatives (e.g., parent, sibling, or child) of people living with T1D. CanCHECK T1D (part of CanScreen T1D) plans to begin later this year and will screen any children for T1D in western Canada.
The presence of autoantibodies warrants regular, lifetime monitoring to detect disease progression, because the time to progression can vary considerably. This can take a serious mental toll on individuals and families, so follow up with experienced medical professionals is needed for extended support and ongoing evaluations. One recent study in Australia explored what families and healthcare providers need during and after the initial screening process.
Developing a supportive pathway for screening
Researchers in Western Australia brought together members of the T1D community (youth living with T1D, people who have undergone screening, had a family member screened, or parents of autoantibody positive children) and diverse healthcare providers (endocrinologists, nurses, social worker, dietitian, etc.).
When the groups came together, the highlighted themes were the need for relevant education and access to reliable information, psychological support and guidance navigating uncertainty, and access to prevention and disease modifying therapies. Notably, the first drug known to slow the progression to T1D (Teplizumab) was approved in Canada in 2025, but it is only exceptionally covered by some private health insurance plans. Study participants also worried about disclosing screening information to health and life insurers.
Education and social support are needed
Together, the groups put forward a pathway for clinic visits and follow ups for their screening program. First appointments are planned to be longer duration, in person, and cover major topics while acknowledging the uncertainty that the family is facing. First, the different stages of early T1D are explained along with the monitoring plan. Then, families are taught how to check blood sugar, what are normal levels, warning signs to look out for (e.g., abnormal thirst), and what the clinical stages are. Finally, families will meet with a social worker to address coping strategies and outline the support offered by the hospital.
After a second appointment over the phone to discuss new results or remaining questions, follow up is tailored to the autoantibody status (1 or 2+), stage, and age of the child. In all cases, families will have access to urgent and non-urgent lines of communication.
Where do we go from here?
This study exemplifies how all parties can effectively work together to create a pathway that best supports families through the process of screening for T1D. Screening can be stressful, but so is entering into life with T1D with a hospitalization and no time for progressive education for the individual and their family. A major goal of the FEDERATE study is to improve the screening process for adults within the Canadian context.
If you live with T1D and want to contribute to research, join the BETTER registry!
Reference
Black SKP, Tully A, Davis EA, Roberts A, Binkowski S, Cromb L, Taplin C, Mellor BR, Bebbington K, Haynes A. Co-designing a new clinical pathway to support families with children identified as having early-stage type 1 diabetes in Western Australia. Diabetologia. 2026 Jun;69(6):1444-1456. doi: 10.1007/s00125-026-06668-8. Epub 2026 Feb 3. PMID: 41634173; PMCID: PMC13109115.
Written by: Cassandra Locatelli, PhD
Reviewed by:
- Maha Lebbar MD, MSc
- Remi Rabasa-Lhoret, MD, PhD
- Anna Theroux, Pamela Dawe, patient partner
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