Opportunities for T1D Screening and Prevention in Canada
Virtual Workshop Report Summary


2021 marked the 100th anniversary of the discovery of insulin, a Canadian Nobel Prize-winning accomplishment that has helped to save millions of lives around the world. To mark this occasion, Budget 2021 provided $25 million over five years for additional investments in research on diabetes. This new funding will provide an opportunity for the Canadian Institutes of Health Research (CIHR) to continue its successful partnership with JDRF Canada,  to build on the JDRF-CIHR Partnership to Defeat Diabetes and to enhance the CIHR strategic research initiative, 100 Years of Insulin: Accelerating Canadian Discoveries to Defeat Diabetes.

Event description

On February 15th, 2022, the CIHR-Institute of Nutrition, Metabolism and Diabetes (INMD) and JDRF Canada hosted the Opportunities for Type 1 Diabetes (T1D) Screening and Prevention in Canada virtual workshop.  The workshop was attended by T1D researchers from across Canada, as well as researchers with experience in T1D screening from other countries. 

T1D screening and follow-up are not yet part of clinical practice in any country. However, family-based and general population research studies or pilot initiatives are occurring in several countries to enable reductions in the incidence of Diabetic Ketoacidosis (DKA) at diagnosis. DKA is the leading cause of morbidity and mortality in children with T1D, and strongly correlates with negative long-term health outcomes.

In the past few years, advances in genetics, biomarkers and prevention are beckoning us to imagine what role screening might play in improving the lives of individuals who develop T1D. There is evidence that if people are identified in the early stages of T1D, clinical outcomes may be improved around the time of clinical diagnosis, particularly through the reduction in the incidence of DKA.

Workshop objectives

The objectives of the Opportunities for T1D Screening and Prevention in Canada virtual workshop were:

  • To review the state of the science and key research gaps/questions in the field of T1D screening and prevention, globally and in Canada;
  • To determine Canada’s readiness for T1D screening and prevention (capacity, infrastructure, etc.);
  • To identify the potential risks or challenges (including ethical, economic, legal and social) and benefits of T1D screening in Canada, and potential research questions related to identifying and quantifying these risks and benefits;
  • To identify Canada’s particular strengths that can help to accelerate research efforts to advance T1D screening and prevention; and
  • To consider the international context for Canada in the field of T1D screening and prevention

Workshop presentations

The workshop included presentations from researchers across Canada and internationally. The first three presentations provided an overview of the global state of the science and a glimpse at some of the initiatives that are ongoing in different jurisdictions.

  • Topic 1: T1D Screening and Prevention: Global Landscape & State of the Science
    Dr. Frank Martin - Senior Director, Research, JDRF International
  • Topic 2: Case Study – Launching a Pilot Trial of General Population T1D Screening in Australia
    Dr. Kirstine Bell - Principal Research Fellow, Australian Type 1 Diabetes National Screening Program Pilot, The University of Sydney
  • Topic 3: Clinical Trial Networks to Enable T1D Screening & Early Intervention Research: The INNODIA Experience
    Prof. Chantal Mathieu - Professor of Medicine at the Katholieke Universiteit and Chair of Endocrinology at the University Hospital Gasthuisberg Leuven, Belgium

The next three presentations focused on screening in Canada more generally and some key considerations that are relevant to T1D screening.

  • Topic 4: Newborn Screening
    Dr. Pranesh Chakraborty - Associate Professor, Physician, Division of Metabolics and Director, Newborn Screening Ontario , University of Ottawa
  • Topic 5: Genetic Risk Scores to direct screening in type 1 diabetes
    Dr. Richard Oram - Associate Professor, Diabetes UK Harry Keen Fellow, University of Exeter
  • Topic 6: T1D Screening in Canada: The TrialNet Experience and Perspectives on General Population Screening
    Dr. Diane Wherrett - Professor, Department of Paediatrics, Division of Endocrinology, University of Toronto

Summary of discussion

All participants were invited to participate in 30-minute breakout groups to discuss questions aligned with the workshop objectives. The following questions were asked:

  1. What are the priority knowledge gaps and research questions that you would like to see the Canadian research community prioritize in the area of T1D screening during the next 3-5 years?
  2. What are Canada’s particular strengths and barriers that can help or challenge efforts to accelerate research to advance T1D screening and prevention?
  3. How can research be used to identify the potential risks and benefits (which may include ethical, economic, legal, or social) of T1D screening in Canada?
  4. What are some of the key ethnocultural considerations that must be incorporated into new research as part of an approach for equitable T1D screening in Canada?

The following points were raised in response to the questions above:

Acceptability and feasibility

  • Acceptability and feasibility of a national T1D screening program – questions of who to screen, how to screen, and when to screen
  • The need to establish infrastructure for screening and applying interventions – basis for recruitment, managing psychosocial burden on patients/caregivers, etc.

Ethical considerations

  • Does DKA prevention provide sufficient rationale to merit a screening program in the absence of a T1D disease-modifying therapy?
  • Research to understand the psychological burden from a positive screening result with the goal of implementing systems that will support the needs of individuals and families

Cost effectiveness analysis

  • The health economics for a population-wide T1D screening program in the Canadian context – consider costs relating to the screening method (e.g., newborn genetic screening, auto-antibody screening, continuous glucose monitoring, etc.), patient follow-up after a positive screening, and education

Stakeholder engagement

  • The need to bring stakeholders to the table at the earliest stage as they can help design and shape the research themselves, not just further downstream or solely as data points
  • Consider how to educate, garner trust and acceptance from patients, families, primary care providers, professional communities (e.g., endocrinologists), governments, and payers (e.g., insurance companies) regarding screening


  • Utilize the science of patient-preference research to better understand what is needed for patient consent and what can be done to support families going through the process (elements to consider include cost, location, potential for follow-up, etc.)

Indigenous (First Nations, Inuit and Métis) populations

  • Unique considerations regarding screening implementation and engagement (e.g., building trust, gaining acceptance, providing education, etc.) with Indigenous Peoples in different communities

Ethnocultural considerations

  • The need to distinguish between ancestry and genetics (e.g., test performances) and re-evaluate measures of risk (are they good at identifying those at-risk across all populations?)
  • Consider equity, inclusion/engagement of groups historically excluded as part of the research, and understand differences in behaviours, beliefs, cultures, practices, and experiences


  • Studies to advance the understanding of Genetic Risk Scores (GRS) in T1D and their implementation in the Canadian context
  • Staging and risk stratification: studies that investigate new methodology to increase the accuracy of predicting disease progression (stages 1-4), etc.


  • Collaborations nationally and internationally to further the science of T1D screening and prevention (e.g., use of data and biosamples from other countries, coordination of efforts to establish biobanks and the potential for biomarker analyses, harmonization of research approaches, etc.)


CIHR-INMD and JDRF Canada would like to thank all of the workshop participants for sharing their perspectives and insights on the topic of T1D screening and prevention. The discussion in this workshop will further inform and build on the JDRF-CIHR Partnership to Defeat Diabetes and CIHR's 100 Years of Insulin: Accelerating Canadian Discoveries to Defeat Diabetes.

For more information

The entire workshop report [ PDF (797 KB) - external link ] is available to the public through JDRF Canada’s Website.

A list of all funded projects through the CIHR initiative 100 Years of Insulin: Accelerating Canadian Discoveries to Defeat Diabetes, can be found online.

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