The Rare Disease Foundation is a collaborator in Child-Bright, the new $25 million Canadian research program for children with brain-based conditions and their families.
Every child deserves a bright future, says Dr. Annette Majnemer.
Occupational therapist and scientist at the MUHC Research Institute, Majnemer is hoping a $25 million research grant announced Thursday will help improve the lives of families and children with brain-based disabilities such as autism spectrum disorders, cerebral palsy and attention deficit.
Based at the Montreal Children’s Hospital, Majnemer is the lead investigator of a new Canadian network research project on brain-based disabilities called CHILD-BRIGHT, with researchers in hospitals in Toronto and Vancouver.
About 10 to 15 per cent of children are born with developmental disabilities. Many have chronic and lifelong health conditions and require long-term support, Majnemer said.
The research project will focus on finding innovative therapies to improve brain development using brain stimulation techniques and medications.
The research will look at developing Web-based mobile applications and video games to improve the emotional and social well-being of children. Anxiety and aggression and other behaviours are often an issue that is common to such conditions, she said.
The project will also attempt to deliver a more coordinated, family-oriented health service to help parents navigate the care system using e-health tools starting when their newborns infant leave the hospital through childhood and teen years as their children become adults.
“Parents are finding that as children transition from one stage of development to another, they often feel like they are falling off a cliff. They just don’t know where to go in terms of services, where to access services, or what their child needs,” Majnemer said. “We’ll be developing a coach model or navigator model, similar to what’s been done in complex care for children with complex medical problems.