Pre-Announcement: CIHR-JDRF Type 1 Diabetes Screening Research Consortium (Anticipatory)

CIHR and JDRF Canada are pleased to provide information about a potential funding opportunity we anticipate launching in the near future. It stems from the 2021 Federal Budget announcement on strategic investments in diabetes research. In preparation for this funding opportunity, JDRF and the CIHR Institute of Nutrition, Metabolism and Diabetes (INMD) held a Workshop on Opportunities for Type 1 Diabetes (T1D) Screening & Prevention in Canada in February 2022. A summary of the proceedings from this Workshop [ PDF (797 KB) - external link ] can be obtained by visiting JDRF Canada’s website.

While this funding opportunity has yet to be finalized, CIHR and JDRF Canada are providing preliminary information at this time to allow the community to prepare and respond to what will be an expedited process.

Overview

Approximately 300,000 Canadians live with T1D, and the incidence of T1D in children in Canada is among the highest in the world. In Canada, around 25-45% of new pediatric T1D diagnoses in the general population present with the life-threatening complication of diabetic ketoacidosis (DKA)^{Footnote 1Footnote 2Footnote 3}. DKA is the leading cause of morbidity and mortality in children with T1D, and DKA at diagnosis strongly correlates with long term negative health outcomes.

Research studies have shown that T1D screening combined with clinical monitoring can reduce the incidence of DKA at diagnosis from 25-62% to 4-6%^{Footnote 4}, reducing healthcare system burden and improving short and long-term outcomes for patients and families. Most T1D screening studies have focused on family members. However, as 90% of people diagnosed with T1D do not have any family history, family-based screening does not identify the majority of people at risk^{Footnote 4}.

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 DKA at diagnosis, as well as provide opportunities for individuals to participate in clinical trials of drugs that could delay onset of clinical disease.

The goal of the CIHR-JDRF Type 1 Diabetes Screening Research Consortium is to develop a single nationally coordinated research Consortium to explore key research questions pertaining to the feasibility and acceptability of a general population T1D screening program in Canada, building on experiences from other countries.

Objectives

The objectives of this funding opportunity are to:

• Establish an interdisciplinary, inter-jurisdictional, and inter-sectoral National T1D Screening Research Consortium that aims to investigate the feasibility of T1D screening in the general population in Canada, building on the successes and experiences from other countries.
• Develop, implement, and evaluate research relevant to T1D screening that generates evidence to increase opportunities to identify pre-symptomatic T1D in the Canadian pediatric population, reduce the incidence of DKA at diagnosis, and improve outcomes for children and youth diagnosed with T1D, and their families.
• Support research that involves meaningful engagement with diverse stakeholders and people with lived experience (PWLE; i.e., people at risk of or with T1D, and their families and informal caregivers, or a patient organization representing these groups), with particular attention to health disparities, Canada’s diverse ethnocultural population and Indigenous Peoples' health and well-being.
• Build Canadian research capacity in the area of T1D screening.
• Maximize research impact and knowledge mobilization to inform health policy, decision making and planning; this includes the ethical, economic, legal and social aspects of T1D screening in the general population.

Consortium Structure and Application Requirements

The Consortium is asked to include the following:

1. A Leadership and Governance Group: The Consortium must establish a structure (see figure 1: Proposed Consortium Model) with strong leadership that will ensure meaningful collaboration and resource sharing is enabled, efficiencies are gained, duplication is reduced, and research impact is maximized. Members must include the Nominated Principal Applicant (NPA), Principal Applicant (PA) of each Research Team, Cross-Cutting Theme Leads and at least one PWLE.
2. A Coordination Core: The Consortium will include a Coordination Core that serves as an operational and administrative hub that will facilitate harmonization and engagement among T1D stakeholders (both nationally and internationally) to accelerate research, build synergies among Research Teams/Cross-Cutting Theme Leads, and mobilize knowledge generated to maximize the impact of the Consortium’s activities.
3. Cross-Cutting Themes: The Consortium must incorporate all of the following Cross-Cutting Themes and identify a dedicated Theme Lead for each:
   • Patient and Citizen Engagement (must establish a Patient Advisory Committee): The Consortium must outline processes and principles for meaningful engagement of PWLE in core activities, research teams and governance, through the establishment of a Patient Advisory Committee within six (6) months of the funding start date.
   • Knowledge Mobilization and Stakeholder Engagement: The Consortium should engage with researchers, partners, and stakeholders, nationally and internationally, and take an impact-oriented approach at all stages (including in the research planning and design) to ensure ethical, legal, and social issues are considered in all aspects of the research.
   • Data and Biosample Governance: The Consortium must have a robust strategy for how data will be stored, linked and shared, as appropriate, among Consortium members, as well as how biological samples with be collected, stored and analyzed (if applicable). Research data managed by the Consortium should be as FAIR as possible – Findable, Accessible, Interoperable, and Reusable.
   • Inclusion of Indigenous Peoples (First Nations, Inuit, Métis and Urban Indigenous communities): The Consortium must include appropriate consideration of TCPS 2: Chapter 9 – Research Involving the First Nations, Inuit and Métis Peoples of Canada, as well as respecting principles of Indigenous data governance such as First Nations Principles of OCAP® (i.e., Ownership, Control, Access and Possession), the CARE Principles for Indigenous Data Governance, or other appropriate distinctions-based approaches, and demonstration of meaningful and culturally safe practices, plans and activities throughout the Consortium activities.
   • Health Disparities and Equity, Diversity and Inclusion (EDI): The Consortium is required to ensure an appropriate representation of groups underrepresented in science, and those with a diversity of experiences, within the team and across the Consortium.
   • Sex- and Gender-Based Analysis + (SGBA+): Sex and gender differences, as well as differences due to other intersecting identity factors (e.g., race; Indigeneity) and social processes (e.g., racism, ableism) are important issues that must be considered as a component of this research initiative.

4. Support for Research Teams: Applications must include three or more Research Teams that will undertake research projects to address different aspects of T1D screening. To ensure Research Teams are well positioned to generate new knowledge and apply it in a timely fashion, research activities must include appropriate and diverse stakeholders and partners, bringing together experts from different disciplines (e.g., family physicians, pediatricians, endocrinologists, genetic counsellors, data scientists), sectors (e.g., industry, government, PWLE, public health authorities and not-for-profit organizations), as appropriate.

   The three or more Research Teams must include the following:

   • Acceptability: One Research Team must be dedicated to assessing the acceptability of T1D screening to citizens, families, clinicians and other relevant stakeholders, which may address one or more of the following research areas including but not limited to:
     • Mechanisms for educating and enrolling the target population, including the consideration of consent
     • Assessing readiness of primary care or other aspects of health systems for T1D screening
     • Ethical, psychosocial, and ethnocultural considerations
   • Feasibility: One Research Team must be dedicated to investigating the feasibility of T1D screening in the general population in Canada, which may address one or more of the following research areas including but not limited to:
     • Feasibility and pilot studies
     • Cost-effectiveness studies
     • Investigations of the most appropriate screening test(s) within the Canadian context
     • Collaborations with pre-existing networks for screening (e.g., Newborn Screening Ontario) or current existing screening programs
   • Follow-up and clinical monitoring: One Research Team must be dedicated to investigating mechanisms for follow-up and clinical monitoring of individuals screened for T1D, which may address one or more of the following research areas:
     • Risk communication, counselling and/or education for at-risk individuals and/or their families, tailored to specific ethnocultural communities
     • Follow-up interventions to minimize DKA at diagnosis
     • Care pathway(s) for approaches to monitoring at-risk individuals, through establishing partnerships with primary care providers, and related healthcare education for providers

Additional Research Team(s) may undertake work focused on other research areas relevant to T1D screening.

Funds Available

The anticipated total amount available for this funding opportunity is $12,000,000, enough to fund 1 grant at $3,000,000 per year for up to 4 years. This grant will be jointly funded 1:1 by CIHR and JDRF Canada.

• Of this $12,000,000 up to $2,000,000 is available for up to 4 years ($500,000/yr) to fund the Leadership and Governance Group and Coordination Core activities

Anticipated timeline

These dates are estimates and subject to change.

• Program Launch: August 2022
• Registration:  October 2022
• Application Deadline: November 2022
• Notice of Decision: April 2023

Contact Information

For general inquiries please contact:

CIHR Contact Centre
Telephone: 613-954-1968
Toll Free: 1-888-603-4178
support-soutien@cihr-irsc.gc.ca

Disclaimer

The information contained herein is anticipatory only and does not represent an official funding commitment by the Canadian Institutes of Health Research or JDRF Canada. Accordingly, the information contained herein may differ from the official funding opportunity, if and when, it will be published on ResearchNet.

Date modified:

2022-11-16