***Funding for NEDSAC ended in 2012 and we are no longer collecting data for this project. However, we are still actively engaged in autism research and our new website is under development; please check back here in 2016 for the link to our new site.
The National Epidemiologic Database for the Study of Autism in Canada (NEDSAC) was established in 2001 with funding from the Canadian Institutes of Health Research. Under the direction of Hélène Ouellette-Kuntz, the goal of NEDSAC was to investigate the epidemiology of autism spectrum disorder (ASD) in Canada. Each year of the study period—which varied by region—we collected anonymized information on children diagnosed with ASD, with the help of service providers, government agencies, and assessment and diagnostic clinics (click the “Who We Are” tab to view the participating agencies/partners).
The main purpose of NEDSAC was to track the proportion of children with ASD (the prevalence) in various regions of the country, in order to determine whether the prevalence of ASD was changing over time. In 2006 we received additional funding from the Canadian Institutes of Health Research to confirm the diagnosis of ASD among a sample of children whose information was entered in NEDSAC; this allowed us to estimate how many of those identified as “cases” met specific research criteria for having ASD. This information was important because most research studies use a standardized case definition rather than assuming that everyone with a clinical diagnosis has the condition of interest. We also received funding in 2009 to analyze data housed at the Manitoba Centre for Health Policy to better estimate the prevalence of ASD in that province.
To learn more about NEDSAC, please click the tabs at the top of this page. You may also contact us directly if you would like more information.