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By kristalamb
Posted date: June 11, 2018

Diabetes Action Canada, part of the Canadian Institutes of Health Research SPOR Program in Chronic Disease, is thrilled to announce the launch of the National Diabetes Repository.

The National Diabetes Repository will be a major step forward in the monitoring and treatment of diabetes in Canada by enabling discovery through research in a secure and controlled environment.

The core elements of the repository will be created with Electronic Medical Record (EMR) data starting with existing primary care repositories in three provinces (Ontario – UTOPIAN; Alberta – NAPCReN and SAPCReN; Quebec – RRSPUM).  This represents data for over 50,000 patients with diabetes. Plans are underway to expand data holdings.

Diabetes Action Canada has oversight of the use of the data through a Research Governing Committee. 50% of the Research Governing Committee members are patients; members also include physicians providing EMR data, researchers with expertise in observational and clinical research and subject matter experts in research ethics, privacy and law.

The National Diabetes Repository will be available to Diabetes Action Canada Researchers.  The aims of the research include improving appropriate screening for complications and facilitating effective and timely intervention to ultimately improve the lives and health of Canadian living with diabetes.

Privacy and Security have been paramount in scoping the requirements for the Repository.  Rigorous privacy practices have been embedded into the foundation of the Repository and have been incorporated into all our policies and procedures.  This will allow us to provide access to researchers without compromising data security.  The National Diabetes Repository is managed at North York General Hospital and the physical hardware is housed at the Centre for Advanced Computing (CAC), a secure Compute Canada facility in Kingston, Ontario.

Submission Process:

Researchers will receive controlled access to the secure environment upon receiving approval from the Research Governance Committee.  The approval will be contingent on alignment with Diabetes Action Canada core values, research ethics approval and confirmation of funding. Researchers will be able to electronically fill and submit an application through (currently under development) or by contacting


Data housed within the National Diabetes Repository are de-identified. Diabetes Action Canada has oversight of the use of the data through a robust Research Governing Committee.

Based on the project requirements, as outlined in a dataset creation plan, the Repository Data Manager will provide a cut of research data onto a secure virtual desktop for analysis.  This cut of data will be aligned with the REB approved research proposal reviewed and approved by the Research Governing Committee.

Analytic Workspace:

Researchers will have access to a suite of statistical programs.

It is important to note that the data provided will be restricted to the secure virtual desktop and cannot be removed from the environment.

Data Elements:

Allergy Intolerance Family History Medical Procedures
Disease Case Indicator Health Conditions Demographics
Diagnosis Laboratory Results Risk Factors
Encounter Medication Vaccine

Additional data elements may be available.  If interested, please request an updated data dictionary.

The launch of the Diabetes Action Canada National Diabetes Repository will enable unprecedented scientific insight into patient health, comorbidities and a deeper understanding of the mechanisms behind diabetes and its related complications.

Questions? Please contact or

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Conrad Pow

Related Webinars

Research Spotlight – National Diabetes Repository

This webinar highlights the National Diabetes Repository and its use as a valuable research tool for those interested in applying data science to their investigation in diabetes and its related complications.

Associated Programs

Digital Health Solutions for Learning Health Systems

Using health data to better understand those living with diabetes and transform diabetes self-management.

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Using data to improve health care

Episode four discusses how we can use data to improve health care. Guests Devin Cleary and Dr. Alanna Weisman discuss their research projects in this area – in particular how they are trying to improve outcomes for people with type 1 diabetes.

Using Data to Change Lives

Episode six features Kylie Peacock, a Diabetes Action Canada Patient Partner and Conrad Pow, a Senior Project Manager at Diabetes Action Canada discussing the National Diabetes Repository and how Diabetes Action Canada is using data to change lives.

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