The UBC Faculty of Medicine is helping to lead a national project to improve outcomes for children with brain-based developmental disabilities and their families.
Researchers from the UBC departments of pediatrics and medical genetics are leading or co-leading four of the dozen investigations funded by the network. They are exploring new diagnostic tests, therapies, service models and technologies to help optimize development, promote better health outcomes, and deliver more responsive services to families and children.
The five-year project, called CHILD-BRIGHT (Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories), is focused on children with brain-based disabilities 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.
Dan Goldowitz, a Professor of Medical Genetics, is one of CHILD-BRIGHT’s three co-directors, along with Steven Miller at University of Toronto (formerly of UBC) and Network Director Annette Majnemer of McGill University.
Dr. Goldowitz, a Canada Research Chair in Developmental Neurogenetics, Investigator with BC Children’s Hospital, and Senior Scientist in the Centre for Molecular Medicine and Therapeutics, is also Scientific Director of the Kids Brain Health Network (formerly called NeuroDevNet), a Canadian Network Centre of Excellence (NCE) created in 2009, focusing on autism spectrum disorder, cerebral palsy, and fetal alcohol spectrum disorder, sleep, the social determinants of health and health economics.
While the Kids Brain Health Network has made major contributions to our knowledge of neurodevelopment, Dr. Goldowitz and his colleagues were drawn to the opportunity presented by the federal government’s Strategy for Patient-Oriented Research (SPOR), which engages patients as partners and focusses on patient-identified priorities with the goal of improving outcomes.
Dan Goldowitz
“We were intrigued not only by the emphasis on human clinical trials, but also by the notion of flipping the traditional model in which scientists and clinicians call all of the shots,” Dr. Goldowitz says. “In this project, we will be working with families – not just the parents, but the children, too.”
CHILD-BRIGHT, one of five SPOR projects in chronic diseases, is receiving $12.5 million over five years from the Canadian Institutes of Health Research, and matching funds from 27 public and private sources across Canada, including the BC Children’s Hospital Foundation, the Montreal Children’s Hospital Foundation, SickKids and Three To Be in Toronto, and the IWK Health Centre in the Maritimes. The Michael Smith Foundation for Health Research will be providing $500,000, and the UBC Faculty of Medicine and the UBC Vice President, Research Office will each contribute $125,000.
(UBC is leading or deeply involved with two other SPOR projects – one focused on chronic kidney disease, the other on diabetes.
CHILD-BRIGHT’s 12 research projects fall under three themes:
- “Bright Beginnings” – Projects to optimize brain and developmental outcomes, which includes two UBC-led projects:
- Pediatrics Professor Jan Friedman, along with Affiliate Associate Professor of Pediatrics Clara van Karnebeek (now at Emma Children’s Hospital AMC in Amsterdam) will use genomic and metabolic analysis to diagnose cerebral palsy not caused by brain injuries in early life to see if that will enable more personalized treatments.
- UBC Clinical Professor of Pediatrics Anne Synnes and Prakeshkumar Shah of the University of Toronto will seek to improve communication between health care professionals and parents of children who are born premature, and will test interventions to enhance language and thinking abilities of such children.
- “Bright Supports” – Integrating mental health support into care, which includes one UBC-led project: Professor Tim Oberlander and Clinical Professor Hal Siden, both of UBC Pediatrics, will use a systematic approach to manage the pain of children with brain-based developmental disabilities, with the goal of reducing pain symptoms, improving quality of life for the children and their families, and simplifying treatment options for clinicians.
- “Bright Futures” – Re-designing key parts of health care services to be more responsive to family needs, which includes one project co-led by UBC: Maureen O’Donnell, a UBC Associate Professor of Pediatrics and Executive Director of Child Health BC, and Dr. Majnemer of McGill University will test a standardized online health tool and coaching resource to help parents get the best diagnostic and interventional care for their preschool-age children, with the aim of improving transition to school entry.
Dr. Goldowitz, in his role as a Co-Director of CHILD-BRIGHT, will oversee the network’s training program. His team will engage with patients, researchers and policy-makers to foster a culture of patient-oriented research that could help serve as an example for future health research and lead to better outcomes for patients and their families.