Government takes a big step forward to address the needs of the Parkinson’s Community

Health Canada and the Public Health Agency of Canada (PHAC) are adding Parkinson’s disease to the Canadian Chronic Disease Surveillance System (CCDSS). The decision to include Parkinson’s disease in the CCDSS is a result of Parkinson Society of Canada’s direct involvement in the recent National Population Health Study of Neurological Conditions. This welcome development will give researchers, medical practitioners and policy makers access to a wide range of substantive data on Parkinson’s.

“The decision to add Parkinson’s to the CCDSS indicates that our concerns are being taken seriously by policy makers,” says Joyce Gordon, President and CEO, Parkinson Society Canada. “And the valuable data collected and reported will enable all stakeholders to make evidence-based decisions in support of those living with the disease.”

The CCDSS, in partnership with the federal government and PHAC, is a database of provincial, territorial and federal administrative information, which includes data on physician billing, hospitalization and resident registry databases.

This database contains key medical indicators relevant to those living with Parkinson’s, dating back to 2000. PHAC has assured Parkinson Society Canada that the first report on these indicators will be available within five years, although it could be available sooner. The report and the data collected will foster greater dialogue and knowledge transfer about Parkinson’s in terms of public policy, clinical guidelines and research.

Parkinson Society Canada is looking forward to gaining access to the information in the first report and sharing the results with the Parkinson’s community. In the meantime, we will continue to work closely with the Public Health Agency of Canada to advance its understanding of Parkinson’s disease and the needs of Canadian’s living with Parkinson’s, their families and their care providers.

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