PCMCH and the Better Outcomes Registry & Network (BORN) Ontario have partnered to develop the province’s first Paediatric Diabetes Registry (PDR).
In fiscal year 2023/24, approximately 8,000 children and youth living with diabetes received education and care at 35 paediatric diabetes education programs (PDEPs) across Ontario. However, we do not have a comprehensive picture of the characteristics and health of children and youth living with diabetes served at the PDEPs.
To be housed within the BORN Information System, the PDR will capture data about the characteristics and health of children and youth living with diabetes who access PDEPs across Ontario. These data will be crucial to help us to better understand, monitor and address disparities in paediatric diabetes care and health outcomes in Ontario. PCMCH will utilize data from the PDR to advance the work of the Paediatric Diabetes Network (PDN). PDR data will be used to monitor health outcomes, quality of care and benchmark performance, describe patterns of treatment, identify advocacy opportunities, and more.
The pilot stage of the project was initiated in November 2024, with three PDEPs being onboarded to test, implement and evaluate the PDR. Full implementation (roll-out) of the PDR across the province is expected by the end of fiscal year 2026/27.
Funded by the Ministry of Health, the development and implementation of PDR is informed by members of the PDN (staff from PDEPs), research and clinical experts, health system partners, and importantly, people with lived experience of diabetes (parents and young adults). Please visit the BORN Ontario website to learn more about the membership of the committees and working groups driving this important initiative, as well as a preview of the PDR dataset.