Diabetes in one of the most common lifelong childhood disorders that affects ~40,000 children and youth in Canada. Research shows that even with new technology and drugs, children and youth living with diabetes are still not meeting recommended treatment targets. For example, their blood sugar control is poor, and they are more likely to have lower quality of life and develop other health problems such as heart or kidney disease. This is in part due to poor access to diabetes healthcare, which is worse in disadvantaged populations across Canada. We will develop strategies to address these gaps: The CAnadian PediAtric diabetes ConstortIum (CAPACIty) is a network of 10 childhood diabetes centres from across Canada, and their doctors and researchers who specialize in childhood diabetes. We will partner with patients/families and health care professionals to jointly design a Canada-wide childhood diabetes registry that will support improvements in clinical care, advance research, and inspire action by policymakers like improving coverage of diabetes technology and expanding support for diabetes in school.
We will: (1) create an Advisory Board that will guide all aspects of the project and will include people living with/caring for a child with diabetes, health care professionals, researchers, and policymakers; (2) design and implement, in partnership with the Advisory Board, a childhood diabetes registry and quality improvement initiative called 'audit & feedback' where key clinical measures, that matter most to patients and families, are compared between Canadian diabetes centres; and (3) evaluate how this registry and audit & feedback initiative inform action across all parts of the system including healthcare, research, policy and education. We are unique because we will focus on measuring indicators of inequality so that our strategies will positively impact the most disadvantaged children and youth living with diabetes, and their families.