Health Research BC is providing match funds for this research project, which is funded by the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research (SPOR) Networks in Chronic Disease.
As many as 850,000 children in Canada are living with a brain-based developmental disability (BDD). They face lifelong challenges with mobility, language, learning, socialization and self-care, which impacts their quality of life and create special challenges for their families. They also typically have poorer health, lower educational achievement, fewer economic opportunities and higher rates of poverty than children without disabilities.
CHILD-BRIGHT is a pan-Canadian network of clinicians, patients, families and scientists committed to making the future brighter for infants, children and youth with lifelong brain-based developmental disabilities and their families. The five-year project focuses on those diagnosed with a brain-based disorder such as autism, cerebral palsy, fetal alcohol spectrum disorder, learning or intellectual disabilities, as well as those at high risk for a brain-based developmental disability due to pre-term delivery, congenital heart disease, or genetic anomalies.
Dr. Dan Goldowitz, a professor of Medical Genetics at UBC and the Centre for Molecular Medicine and Therapeutics at the BC Children’s Hospital Research Institute, is one of CHILD-BRIGHT’s three co-directors, along with Drs. Steven Miller at University of Toronto/The Hospital for Sick Children (SickKids), and Network Director Annette Majnemer of McGill University Health Centre’s Research Institute.
CHILD-BRIGHT’S 12 patient-oriented research projects fall under three themes: “Bright Beginnings” – innovative early therapies to optimize brain and developmental outcomes; “Bright Supports” – integrating mental health and wellness support into care for children and youth, and “Bright Futures” – re-designing key parts of health care services to be more responsive to family needs, throughout the trajectory of the child’s and the family’s development.
Goldowitz is overseeing the network’s training program. His UBC team will engage with patients, researchers and policy-makers to foster a culture of patient-oriented research that could help serve as a model for future health research and lead to better outcomes for patients and their families.