A major Canadian study of the diverse and changing paths for children with autism, led by McMaster University researchers, is being broadened across the country through a $1.14 million grant from the Canadian Institutes of Health Research (CIHR).
The Pediatric Autism Research Cohort (PARC) study will be one of the world’s largest studies aimed at finding out the care needs of children with autism, says its principal investigator Stelios Georgiades.
PARC is broadening the study to include 1,000 children across all its sites. These include its four existing locations in Hamilton, Ottawa, Kingston and Sudbury, as well as new participants from autism clinics in Winnipeg, Edmonton and Victoria.
“In this multi-site study, we want to better understand those individual and environmental factors impacting how children develop communication, socialization, and emotional and behavioural skills,” said Georgiades, who is an associate professor of the Department of Psychiatry and Behavioural Neurosciences.
He is also director of the Offord Centre for Child Studies, co-director of the McMaster Autism Research Team, and the inaugural McMaster Children’s Hospital Chair in Autism and Neurodevelopment.
“By doing so, we can generate the evidence needed for more personalized services and supports for these children and their families,” he said.
One in 50 Canadian children is autistic. Autism is a neurodevelopmental condition. Autistic people have a range of abilities and challenges that differ between people and also within people over time. The lack of a clear prognosis often makes it difficult for families and specialists providing care for autistic people.
This study will collect data every six months through PARC’s online platform, from the time of diagnosis to children’s early school years. Caregivers will answer surveys gathering information on the child, family background, services they receive and their environment. Families will also receive a report describing their child’s developmental progress.
“These summary research reports are a feature of the study we are very proud of,” said Lonnie Zwaigenbaum, PARC co-principal investigator and director of the Autism Research Centre in Edmonton.
“They not only give families an evidence-based way to track their children's development, but they are also a resource that can be shared with clinicians and service providers. This will allow them to support families to set goals and priorities that are geared to their children’s specific needs,” he said.
By tracking children’s progress, the PARC Study also aims to gather evidence on what to expect as children with autism develop. This will help clinicians and families to better co-ordinate their efforts when planning care.
“Data on the developmental trajectories and service use of Canadian children diagnosed with autism is greatly lacking. There is no other Canadian study so well-positioned to conduct this type of large scale, longitudinal work,” said Deepa Singal, scientific director of Autism Alliance of Canada and PARC co-principal investigator.
“This study comes at a critical time. The federal government has committed to developing Canada’s first national autism strategy. By working with government agencies and other major stakeholders, we will contribute new knowledge for the creation of Canada’s inaugural autism strategy. Study results will inform recommendations that we put forth to the federal government,” she said.
PARC is working with Autism Ontario, Autism Speaks Canada, the Autism Alliance of Canada, Children’s Healthcare Canada, and the Public Health Agency of Canada (PHAC) as knowledge users on this project.
“Our organization is a leader and advocate for advancing improvement of healthcare services for Canada’s children and youth. This study will help deliver on this goal, while working in close partnership with parents and caregivers,” said Emily Gruenwoldt, President and CEO at Children’s Healthcare Canada.
“We look forward to sharing the outcomes of this work with our members, anticipating that it will make a national impact.”