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.

Executive Steering Committee Members

Name Role Jennifer Anderson Individual with lived experience (caregiver) Tihana Antic Senior Policy Advisor, Perinatal and Specialized Services, Provincial Programs Branch, Ministry of Health Lola Brown Individual with lived experience Tudor Chirila Kinesiologist, Sioux Lookout Meno Ya Win Health Centre Ellen Goldbloom Pediatric Endocrinologist, CHEO Shelly-Ann Hall Manager, Health Analytics, Ontario Health, Toronto Region Alanna Landry Registered Nurse, Oak Valley Health Jenny Merla Nurse Practitioner, McMaster Children’s Hospital Ethan Parikh Individual with lived experience Jennifer Osesky Director, System Strategy, Planning, Design and Implementation, Ontario Health, NorthEast Region Rayzel Shulman Pediatric Endocrinologist, SickKids Elizabeth Stevens Registered Dietitian, CHEO Ian Zenlea Pediatric Endocrinologist, Trillium Health Partners

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.

Data Input and Output Working Group

Name Role Jess Forster Social Worker, Oak Valley Health Shelly-Ann Hall Manager, Health Analytics, Ontario Health, Toronto Region Jennifer Hancock Nurse Educator, NEO Kids, Health Science North Hoda Osman Individual with lived experience Joanne Roberts Individual with lived experience (caregiver) Rayzel Shulman Pediatric Endocrinologist, SickKids Ian Zenlea Pediatric Endocrinologist, Trillium Health Partners

Technology Working Group

Name Role Magen Brady Nurse Practitioner, McMaster Children’s Hospital Amelie Dupont Registered Nurse, CHEO Matthew Feldman Pediatric Endocrinologist, Halton Health Care and Langs CHC

Data Governance Working Group

Name Role Tudor Chirila Kinesiologist, Sioux Lookout Meno Ya Win Health Centre Dana Greenberg Individual with lived experience (caregiver) Ellen Goldbloom Pediatric Endocrinologist, CHEO Alanna Landry Registered Nurse, Oak Valley Health Julie Lau Manager, Halton Healthcare Diabetes Program Denise Penny Clinical Nurse Specialist, SickKids Elizabeth Stevens Registered Dietitian, CHEO Kira Wilson Registered Dietitian, Diabetes Health – Thunder Bay

BORN Ontario and Provincial Council for Maternal and Child Health (PCMCH) Members

Name Role BORN Ontario Gillian Alton Epidemiologist Mireille Cloutier Manager, Clinical Engagement Joseph Essandoh Information System Reporting Analyst Kaamel Hafizi Regional Coordinator Sarah Hamilton Project Coordinator Alysha Harvey Scientific Manager Heather Howley Director of Precision Health, Analytics Research Danna Hull Health Equity Lead Mike Kotuba Security Officer Alex McLeod Systems Administrator Teri Morrow Indigenous Wellness Coordinator Ruth Oladeru Project Manager Raj Ragbeer Business Systems Analyst Emily Reeson Fertility Coordinator Jessica Reszel Knowledge Translation Specialist Eric Smith Legal Counsel Josée St. Denis Clinical Content Specialist, Pediatric Diabetes Alicia St.Hill Executive Director PCMCH Sinaa Dabbagh Program Manager, Equity, Diversity and Inclusion Sanober Diaz Executive Director Dominique Legacy Program Manager, Indigenous Health Equity & Engagement Lesley Tarasoff Program Manager

*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