Creating a network of change
Kids Brain Health Network works with parents to improve treatment for children with neurological disorders
In 2009, a group of researchers from different areas within the developmental disabilities and children’s brain health, met to discuss how they could combine their efforts to create positive change for children with brain-based disabilities. Their discussions evolved and formed a strong multidisciplinary national network of researchers, stakeholders and clinicians, called Kids Brain Health Network (formerly known as NeuroDevNet).
Eight years later, the network is creating early diagnostic tools, learning about new interventions and supporting children and families who are impacted by neurodevelopmental disabilities. They have focused their attention on three main areas of research: fetal alcohol spectrum disorder (FASD), autism spectrum disorder and cerebral palsy.
Christian Beaulieu is in charge of MRI imaging for the fetal alcohol spectrum area. It’s his job to determine if there are differences in the brain structures of children with FASD compared to other children. He’s discovered that regular brain MRI scans don't show anything obvious but quantitative measurements of brain structure show widespread brain injury in FASD. Beaulieu leveraged the support he received through the Kids Brain Health Network and WCHRI to obtain additional funding from CIHR. This will allow him to continue analyzing structures in the brain and identifying areas that are affected by FASD.
Lonnie Zwaigenbaum is the team lead for the autism spectrum disorder area. “We’ve certainly learned a lot about the genetics of autism through collaboration with the Kids Brain Health Network, which may help us better understand the biological mechanisms and potentially develop new treatments” says Zwaigenbaum. “We’ve also been developing an early detection tool for autism that we are hoping to integrate into the community to help with early diagnosis.” With the support of the network, Zwaigenbaum’s colleague Jessica Brian has partnered with the Ministry of Children and Youth Services in Ontario to introduce a toddler intervention program into the community.
A similar approach is being taken in the area of cerebral palsy. “One of the best outcomes of the network is that we have brought together all of the cerebral palsy investigators across Canada,” says Jerome Yager, one of the team leads in cerebral palsy. “It’s the first time that the researchers are talking to parents and having a bi-directional dialogue about what is a priority for them and new possibilities for patients with cerebral palsy through research.” Through this network of investigators within cerebral palsy, an ‘app’ was developed for patients to access nearby facilities, and the team has begun clinical trials in both rehabilitation and prevention. Partnerships with other funders and business have grown as well to better implement solutions the network has found.
WCHRI has recently supported one of the main initiatives of the cerebral palsy area: the Canadian Cerebral Palsy Registry. The registry contains about 1,500 individuals with cerebral palsy across Canada. John Andersen has been helping to build the registry over the last eight years and is using this new information, such as how cerebral palsy affects individuals in Northern Alberta, to affect how clinical services are delivered and change policies to be centred around best practices for patients and their families. “We’ve spent a lot of time building a platform that will allow us to jump into ‘the next big thing’,” says Andersen.
“Building a platform” is exactly what Kids Brain Health Network and WCHRI hoped would happen when the network was formed back in 2009. “The goal was to try to bring together these groups of individuals to work together so we could be more than the sum of our parts,” says Dan Goldowitz, the scientific director at Kids Brain Health Network. “I can’t put a value on what WCHRI has done, but it’s been phenomenal. WCHRI investigators are some of the bedrock of Kids Brain Health Network.” All of these projects and investigators funded through WCHRI and the Kids Brain Health Network have created the foundation to spur a change in how researchers interact with families. This collaborative environment will allow researchers to achieve more than one individual ever could.
The research being done by the Kids Brain Health Network was funded by the generous support of the Stollery Children's Hospital Foundation, through WCHRI.