In Canada, an estimated 300,000 Canadians have a diagnosis of type-1 diabetes (T1D) and this number is increasing annually. Those living with T1D have complex health needs that require constant self-management and treatments, including continuous administration of glucose. Most who live with T1D are very engaged in their treatment plans and use their personal health data and technology to monitor their health and well-being. Members of the T1D community form a unique group who strive to connect with one another and who are keenly interested in clinical research. Even with this interest, not all persons living with T1D have the opportunities or are aware of clinical research initiatives that are relevant to them. Based on feedback from our Patient Partners, our Innovation in Type-1 Diabetes (iT1D) Research Program is working with an initial stakeholder group, including Patient Partners, to develop the framework for creating a pan-Canadian T1D registry. This registry will connect persons living with T1D with clinical researchers and enabling them to use their health data (by consent) in population research and clinical trials to evaluate clinical effectiveness of new therapies and models of care and patient outcomes.
This is a big task that cannot be done alone and so the T1D Research Program is thrilled to announce a collaboration with the Type 1 Diabetes (T1D) Think Tank Network, a highly specialized and collaborative national network of patients, endocrinologists, diabetes educators, family practitioners, dieticians, nurses, pharmacists, patient support associations, and administrators, to proved expertise and guidance as we establish our T1D Registry. The T1D Think Tank Network is a not-for-profit organization in Canada providing innovative experiential education to the T1D community, including healthcare providers and T1D patient opinion leaders. In collaboration with the T1D Think Tank, Diabetes Action Canada will host a one-day Insight Session (Workshop) in Toronto, ON to guide the planning of our T1D registry. We are specifically interested in understanding the views of individuals with T1D about using their health data to further research in Canada. As a collective, we plan to co-create a communication strategy that will include methods on engaging the T1D community, telling the story of the T1D registry in a patient-oriented manner, and testing consent questions and approaches to inspire enrolment. The ultimate goal is to have the T1D Registry truly patient informed and operating independently from health care teams, with persons with T1D having the ultimate say on how their health data is used for research.
This collaborative event will be held in November 2018.