Parkinson Canada invites people living with Parkinson’s disease to join the Canadian Open Parkinson Network (C-OPN) to be part of the solution to improve lives for those living with Parkinson’s and ultimately to help discover a cure.
Phase one of C-OPN brings together many of Canada’s best in Parkinson’s research with eight sites initially taking part in four provinces, giving investigators access to unprecedented data and facilitating collaboration between patients and the research community around a shared goal: better treatments for Parkinson’s today and a world without Parkinson’s tomorrow.
C-OPN is platform whereby participants living with Parkinson’s disease and related disorders are connected with scientists across Canada to participate in research studies and trials to form a comprehensive database that will accelerate knowledge, improve the understanding of this multifaceted disease, and facilitate large-scale projects and trials with a variety of techniques and analysis methods with high statistical power.
The platform focuses on the active role of the patient, a link that participants understand and appreciate.
“It was pretty devastating to receive news that I have Parkinson’s disease. I thought it was kind of a death sentence. I found out it wasn’t. Now, I’ve come to realize that nobody can take away my Parkinson’s unless these wonderful researchers come up with a cure. Participating in medical research is worthwhile,” says Dulcie Webb, diagnosed with Parkinson’s in 2016, and participant in the Calgary Parkinson Research Initiative (CaPRI) site that is linked with C-OPN.
This collaboration and investment enables the creation of three distinct infrastructures:
- National Patient Registry: linking potential research participants to scientists across Canada conducting research studies and clinical trials
- De-identified Database: capturing demographic, medical, and cognitive patient information over time as well as brain imaging data to support cutting edge scientific investigations
- Biobank: collecting biological specimen (eg. blood) and storing them in a research biobank to enable genetic and other scientific analyses
Dr. Oury Monchi, a professor and Clinical Research Director at the University of Calgary’s Hotchkiss Brain Institute, Canada Research Chair and Tourmaline Chair in Parkinson’s disease in the Department of Clinical Neurosciences at the University of Calgary’s Cumming School of Medicine is the Principal Investigator and Director of C-OPN.
“By building a strong, interconnected and collaborative network of researchers, physicians and people living with Parkinson’s, we can work strategically to accelerate advancements in Parkinson’s research and treatment,” states Dr. Monchi.
C-OPN was created through a $2-million Brain Canada Platform Support Grant. $1 million was provided by Brain Canada in partnership with Health Canada through the Canada Brain Research Fund and this was matched by a $1-million investment of funds supplied by generous donors to Parkinson Canada, who led the project development.
“A future without Parkinson’s requires transformative change and unwavering commitment,” said Karen Lee, PhD, President and CEO of Parkinson Canada. “By creating C-OPN with our partners, we are shaping the global state of Parkinson’s research. Once we understand bigger questions like causes of Parkinson’s, together, we can better serve the needs of the Parkinson’s community. A collaboration like C-OPN allows us to reach more people affected by Parkinson’s and accelerate research discoveries that one day will unlock a cure. None of this would be possible without significant financial backing, and donors are stepping up to make it all happen.”
For more information on C-OPN, visit www.copn-rpco.com
For more information on Parkinson Canada, visit www.parkinson.ca