Grant: Planning and Dissemination Grants - Institute/Initiative Community Support

CHEO Research Institute is uniquely positioned to advance patient- and family-centred pediatric health research in Canada. It serves as a national hub for several major pediatric precision health initiatives, including Care4Rare Canada, K2A-RD, and the Connect Registry, which aim to improve diagnosis, research, and care for children affected by rare diseases. At the same time, CHEO Research Institute has developed one of Canada's largest and most established family engagement programs, with more than 70 Family and Youth Leaders contributing their lived experience to research and healthcare improvement activities. As both the pediatric precision health ecosystem and the Family Leader Program continue to grow, there is an opportunity to bring families, youth, researchers, clinicians, and community partners together to help shape their future direction. This activity will be a one-day event. Participants will work together to identify priorities for future pediatric precision health research, develop approaches for sharing research findings in ways that are meaningful and accessible to families, and explore opportunities to strengthen patient and family engagement across research initiatives. The retreat will also provide an opportunity to reflect on the successes and challenges of the CHEO Research Institute Family Leader Program and identify ways to strengthen engagement, capacity building, and partnership opportunities moving forward. The project will generate patient- and family-informed research priorities, recommendations to strengthen family engagement infrastructure at CHEO Research Institute, and strategies to support communication and collaboration across Canada's pediatric precision health community. These outputs will help ensure that future research reflects the needs and priorities of the children and families it aims to serve.