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Take part in research

Why register for the Canadian Open Parkinson Network?

Your involvement in research is essential to making a difference.

Clinicians and researchers across Canada have joined forces to accelerate research in Parkinson’s disease. However, their success depends on people living with Parkinson’s disease’s involvement.

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You will be prompted to input your contact information in a form when you click “Participate”. Once you submit this information, this notifies the coordinator at the Canadian Open Parkinson Network site that you selected that you are interested in registering for the network.



Upon receiving your contact information, the Canadian Open Parkinson Network coordinator will contact you via phone or email to register for the Canadian Open Parkinson Network.



If you agree, the coordinator will provide you with clear instructions on how to register. This will entail filling out some questionnaires either online, over the phone, or in-person based on your preference. Additionally, you may be asked to come for an in-person visit at the Canadian Open Parkinson Network site you selected.

By consenting to participate, you will be an essential part of:

  • National Registry: your name and contact information will be added to a list that allows scientists across Canada to invite you to participate in research or clinical studies
  • De-identified* Database: during your in-person or remote visit you will be given a questionnaire and cognitive assessment allowing your demographic, medical, and cognitive information to be made available to scientists across Canada to support cutting-edge research (*your data will not be labeled with your name)
  • Biobank: during your in-person visit you will be asked to donate biological materials (blood) that will be added to the research bank for scientists and clinicians from across Canada to use for different analyses

Your participation in active research projects is essential to better understand Parkinson’s disease, and for future development of innovative therapies.

Your participation will advance knowledge about Parkinson’s and lead to improved treatments. You and future generations can benefit and this is only possible with your help.

How does C-OPN help people with Parkinson’s disease?

More than 100,000 Canadians live with Parkinson’s disease and related disorders. Currently, there are no definitive tests to diagnose Parkinson’s disease, and treatment addresses mainly the motor symptoms and not the non-motor-symptoms, which can have huge impacts on quality of life. This network will harness efforts from researchers and clinicians across Canada in order to promote multidisciplinary collaborations, and enable large-scale projects not possible at a single centre. We are creating an unprecedented registry and database in Canada focused on Parkinson’s research. C-OPN will drive more efficient research and accelerate our understanding of the complexity of the disease. This knowledge will lead to novel treatments for Parkinson’s.

“The Parkinson’s research registry is important and should be recognized. It not only records data, but also gives out information that can guide future research. I enjoy working with the researchers and being part of a larger community of volunteer participants. I want to pay back prior study participants, who helped research that I benefit from and now I can pay it forward to future generations. This is your chance to be part of the future knowledge of Parkinson’s disease.”

– Eldean Kathol, 84, diagnosed 30 years ago

Linda Bérard with her partner and caregiver Yves Lafortune

“It was early in the summer of 2013, at the age of 44, that we received the shocking news that I had Parkinson’s disease. And it was shocking. A total Knock Out … .3,2,1 out! Our life was turned upside down, and we sought to better understand this insidious disease that invades me. When Dr. Fon told us about the Quebec Parkinson Network [now linked to the Canadian Open Parkinson Network], I registered without hesitation. As parents (and now grandparents), our greatest wish is to win the fight against this chronic and degenerative disease so that generations following us will speak about Parkinson’s as a curable disease. To date, I have participated in several research protocols and, to the best of my abilities, I will continue to do so. ”

– Linda Bérard, diagnosed in 2013

The Calgary Parkinson Research Initiative [now linked to the Canadian Open Parkinson Network] was well organized and comprised of two site visits of 3 hours each. The research coordinators were well prepared and this made participation enjoyable. I consider it a privilege to have the opportunity to advance research in Parkinson’s disease. Get involved… What are you waiting for?

– Laurine Fillo, 55, diagnosed in 2003

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