Partners to help children with brain-based disabilities and their families
In Canada, approximately 850,000 children under the age of 14 are living with a brain-based developmental disability such as autism, attention deficit disorder, or cerebral palsy. Many face lifelong challenges with mobility, language, learning, socialization, or self-care abilities that impact their quality of life.
In March 2016, the Canadian Institutes of Health Research (CIHR) funded a new pan-Canadian network called CHILD-BRIGHT that’s goal is to help improve outcomes for these children and their families. This important work has been embraced by WCHRI, who is providing funding with the generous support of the SCHF.
Under Canada’s Strategy for Patient-Oriented Research (SPOR) initiative, CHILD-BRIGHT will work with patients, families and other key stakeholders to create novel interventions to optimize development, promote health outcomes, and deliver responsive and supportive services to children with brain-based developmental disabilities and their families across their lifespan.
“Our network runs four programs: a research program, training program, knowledge translation program, and a citizen engagement platform,” says Annette Majnemer, director of CHILD-BRIGHT, occupational therapist, senior scientist at the MUHC, and vice-dean of education at the Faculty of Medicine at McGill University.
“In our Research Program, led by Co-Director Steven Miller, head of neurology and senior scientist at SickKids, 12 research project teams are focusing their work around three themes: BRIGHT Beginnings (projects to optimize brain and developmental outcomes), BRIGHT Supports (projects to integrate mental health support into care), and BRIGHT Futures (projects that will redesign health care services to be more responsive to family needs).”
“In our Training Program, led by Co-Director Dan Goldowitz, scientist at the BC Children’s Hospital, professor in the Department of Medical Genetics at UBC, and scientific director of Kids Brain Health Network, we will train stakeholders about patient-oriented research.”
“Our Knowledge Translation Program team will find and promote better ways to share credible information. And our Citizen Engagement Platform team will engage all stakeholder groups, including patients and families, to ensure our research is patient-oriented, meaningful, and user-friendly.”
“Our work would not be possible without the valuable contribution of the Women and Children's Health Research Institute, who are helping to fund an essential resource in our network, our Data Coordinating Center (DCC),” says Majnemer. “The DCC will support the informatics and biostatistics needs of the network to ensure we address privacy and other provincial jurisdiction issues relating to collecting, sharing, and integrating data from our multiple platforms. We are very grateful for WCHRI’s partnership, which is possible thanks to the generous support of the Stollery Children’s Hospital Foundation!”
Headquartered at the Research Institute of the McGill University Health Centre (RI-MUHC), CHILD-BRIGHT’s work is made possible thanks to a five-year grant by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), and 27 generous funding partners from public and private sectors across Canada. Learn more at www.child-bright.ca.