Grant: SPOR Networks in Chronic Disease - LOI

Each year in Canada more than 1 in 10 newborns are born preterm or with heart disease. These conditions lead to chronic disease with life-long impact. These newborns begin their lives in a neonatal intensive care unit followed by life-long interaction with the health-care system for chronic diseases that affect development, physical health, growth and educational achievement. Our focus is on amelioration of the chronic conditions that are inevitable in these children. Our vision is that all babies born ill who experience lifelong chronic diseases will achieve optimal life outcomes as full citizens of Canada. We will embrace a child and family-focused, solutions-oriented approach to achieve "Brighter Futures: Supporting Children and Families to Promote Resilience and Health." This approach will transform the outcomes of infants, children and youth living with chronic health conditions arising from preterm birth or congenital heart defects (CHD). The findings from this patient-oriented research network will change the focus of clinical practices across Canadian health care facilities to optimize the development and well being of children born preterm or with CHD and their families. Our national multi-stakeholder network, including clinicians, scientists, parents, and decision-makers from across the country will generate innovative new knowledge of high relevance to children and families and rapidly mobilize these new discoveries as well as existing knowledge. Three themes of research and knowledge translation will be pursued to improve the outcomes of children born preterm or with CHD, crossing the two research to practice Valleys: 1. Developing novel early interventions to optimize brain development and child outcomes, 2. Designing service delivery to enhance recovery and resilience for brighter futures, 3. Promoting child/family mental health to improve trajectories and relieve family burden. Children are our future; it is time to move from survive to thrive.