Registry data combined with rapid knowledge sharing and patient engagement can inform patient-informed and data-driven quality improvement (QI), advance research, drive advocacy, and shape policy. Canada currently does not have a nationally coordinated pediatric diabetes registry, which limits effective knowledge transfer for research and quality improvement. Our project aims to develop a nationally coordinated person-centered registry of pediatric diabetes data, “The CAnadian PediAtric diabetes ConsortIum (CAPACITY)”, with health providers, researchers, patients, and their families.
Together with a national team of PIs, the CAPACITY project aims to 1) co-design a Canadian pediatric diabetes registry (phase 1), 2) co-implement the registry (phase 2) and 3) co-evaluate the impact of the registry (phase 3). The first phase of this project (registry co-design) was recently completed, under the leadership of Dr. Ian Zenlea, using a multi-stage co-design Community-based Participatory Research approach. The research activities consisted of assembling a project advisory board, and conducting two knowledge exchange events followed by a series of 4 multi-part data mapping workshops with a variety of shareholders including youth with type-1 diabetes (T1D) and their caregivers, researchers, clinicians, data scientists, and community partners. Through our work, we identified primary challenges within T1D which mainly pertained to mental health, education, and transition from pediatric to adult care. Using the challenges as a foundation, our team then explored data gaps, user experiences, and the integration of available data into the registry. We also examined the involvement of beneficiaries in data input, access, utilization, and oversight for the CAPACITY registry. Our work concluded with the development of potential use cases and concrete recommendations for CAPACITY registry development, which will now guide the prototyping and co-implementation of the registry in Phase 2.
Study Publications:
Lay Report: CAPACITY Lay Report_Final
Chapter 1: CAPACITY Report_Chapter 1_Final
Chapter 2: CAPACITY Report_Chapter 2_Final
Chapter 3: CAPACITY Report_Chapter 3_Final
PARTNERSHIPS: BC Children’s Hospital Research Institute, McGill University, Diabetes Canada, Breakthrough T1D (formerly JDRF), Fonds de recherche du Quebec, Canadian Paediatric Society (Ontario), Hospital for Sick Children, University of Toronto, University of Windsor, Women’s College Hospital (Toronto), Children’s Hospital of Eastern Ontario Research Institute, University of Saskatchewan, University of Calgary, Norway House Cree Nation, University of British Columbia, University of Alberta, Universite de Sherbrooke, University of Manitoba, Markham Stouffville Hospital (Ontario), Dalhousie University (Nova Scotia)
