Paediatric Diabetes Registry
About Ontario's Paediatric Diabetes Registry (PDR)
Over 7,000 children and youth across Ontario are living with diabetes. Diabetes is a condition in which the body does not produce insulin or does not properly use the insulin it produces. Generated by the pancreas, insulin is a hormone which helps regulate the body’s glucose levels. Diabetes education and proper management are instrumental to avoiding diabetes-related complications later in life.
Children and youth in Ontario receive diabetes care from multidisciplinary care teams at 35 Paediatric Diabetes Education Programs (PDEPs) across the province, who are dedicated to facilitating the best care possible for children and their families.
The PDR aims to capture data about the characteristics and health of children and youth with diabetes and receiving care from PDEPs across Ontario. These data are crucial to help us to better understand, monitor, and address discrepancies in paediatric diabetes care and health outcomes across Ontario.
Consolidated diabetes-related data collected from PDEPs, linked to other provincial datasets where appropriate, can be used by health care providers and policy makers to monitor health outcomes, quality of care, benchmark performance, identify advocacy opportunities, and support research and evaluation of various care models.
Funded by the Ministry of Health, the PDR is a joint project of BORN Ontario and the Provincial Council for Maternal Child Health (PCMCH). The PDR is informed by health system partners, research and clinical experts, staff from PDEPs, and people with lived experience of diabetes. This three-year project which began in April 2023 is expected to be completed by March 2026.
Executive Steering Committee
Achieving the goal of developing and rolling out the registry requires the input and direction of paediatric diabetes experts across the province. Guided by previous expert-led scoping work, the PDR Executive Steering Committee is informing BORN and PCMCH on this important work.
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Working Groups
Diabetes professionals are also lending their expertise on PDR development via working groups focusing on targeted elements of registry development, including data collection and data reporting, technological solutions, and governance of the data the PDR will hold.
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| Data Governance Working Group | ||||||||||||||||||
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| BORN Ontario and Provincial Council for Maternal and Child Health (PCMCH) Members | ||||||||||||||||||||||||||||||||||||||||||||||||||
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*Please note, some members may not be reflected in these tables
Patient and Caregiver Experience
Active participation of paediatric patients and their caregivers is important to the development and rollout of the PDR. Patient and caregiver perspectives significantly enhance the overall value and relevance of this initiative. We recognize the unique insights and perspectives these individuals bring to the table, and how these will be critical in ensuring the success and effectiveness of the PDR.
Individuals with lived experience participate and provide input on our steering committee, data input and output working group, and data governance working group. Further participation of individuals with lived experience in the diabetes community, including perspectives from equity-deserving and Indigenous communities, is expected throughout the registry's development.
Contact Us
General Inquiries: PDR@BORNOntario.ca
Josee St. Denis, Clinical Content Specialist, RN, CDE
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