Launch of the Diabetes Action Canada National Diabetes Repository
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.