To effectively serve the Parkinson’s community, it is important to have a strong understanding of our numbers. Understanding the size and scope of the Canadian Parkinson’s community helps us convey the urgency of our cause to government and supporters and is fundamental to our strategic planning.  

Recently, an academic publication was released reporting new incidence rates (number of new diagnoses per year) of Parkinson’s for Canada and the US. The study made their calculations using five datasets of medical billing records– four from the US and one from Ontario.  

One of the major findings from the paper was that the US had much higher rates of new diagnoses than had previously been reported, jumping from 60,000 new cases per year to an estimated 90,000. This garnered lots of interest and news attention from the Parkinson’s community and left us with an obvious next question – are the numbers for Canada also being underreported? 

In Canada, we are fortunate the federal government tracks many chronic conditions through a project called the Canadian Chronic Disease Surveillance System (CCDSS). The CCDSS uses provincial medical billing records to track chronic diseases at the national and provincial levels. From 2019-2020, the CCDSS reported over 12,500 new diagnoses of Parkinson’s and, overall, there were more than 103 000 cases of Parkinson’s in Canada. The CCDSS offers an interactive online tool to visualize details and trends that you can view here.  

In collaboration with one of the study authors, Dr. Connie Marras a professor of Neurology at the University of Toronto and Movement Disorders Specialist at the University Health Network, Parkinson Canada compared current the federal government reporting with the publication analysis. We were pleased to find the incidence rates reported by the CCDSS and the academic publication were comparable. “The reporting from both [the CCDSS and our publication] are very similar. Both are based on health services data and use the same Ontario database. The CCDSS reporting also incorporates similar data from other provinces,” explains Dr. Marras. 

This means Canadian reporting of rates of Parkinson’s was not significantly underestimated – as was the case in the US.  

Importantly though, regardless of what model is being used, all reported rates of Parkinson’s are likely an underestimate. As Dr. Marras explains, “Because these numbers come from health services data, a person must have an encounter with the healthcare system to be counted. Therefore, undiagnosed Parkinson’s will be missed. And many individuals with Parkinson’s who are not under the regular care of a neurologist might also be missed as family doctors may not always use the specific billing codes for Parkinson’s.”  

With so many sources of data and information about Parkinson’s it can be difficult to compare and analyze. Parkinson Canada is here to help by staying informed on issues that are relevant for the Canadian Parkinson’s community so we can share it with you. Keep up with the latest research news and sign up for our newsletter to get this info right to your inbox.