The Canadian Open Parkinson Network

Last updated: July 26, 2023
Sponsor: Parkinson Canada and Brain Canada -- Funding for C-OPN was made possible by the Canada Brain Research Fund, an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, and Parkinson Canada.
Overall Status: Active - Recruiting

Phase

N/A

Condition

Parkinson's Disease

Multiple System Atrophy

Corticobasal Degeneration

Treatment

N/A

Clinical Study ID

TX312861
  • Ages < 100
  • All Genders
  • Accepts Healthy Volunteers

Study Summary

Currently, there is no disease modifying treatment for people with Parkinson’s and this kind of breakthrough will only happen if the Parkinson’s research community works together. The Canadian Open Parkinson Network (also known as C-OPN) was created to tackle this problem. It is a Canada-wide research network that bridges researchers, people with Parkinson’s, and data to accelerate discoveries and improve the lives of those living with this disease.

C-OPN is now recruiting people with Parkinson’s or a related type of Parkinsonism living in Canada to participate in clinical research. C-OPN is particularly interested in recruiting participants from diverse backgrounds, in traditionally underrepresented populations in research, in order to get a more representative picture of Parkinson’s disease and Parkinsonisms in Canada. There are currently 10 C-OPN sites, located in 8 cities across Canada, including Vancouver, Calgary, Edmonton, Toronto, London, Ottawa, Montreal, and Quebec City. You would be joining the over 1400 people living with Parkinson’s across the country, who have already signed up and are contributing to cutting-edge research.

If you are living with Parkinson’s disease or another type of Parkinsonism and would like to become a C-OPN participant, get in touch with a C-OPN Research Coordinator or you can register through our website at www.copn- rpco.ca.

Eligibility Criteria

Inclusion

Inclusion Criteria:

People of any age living in Canada near a C-OPN Site (Vancouver, Calgary, Edmonton, Toronto, London, Ottawa, Montreal, or Quebec City) either:

  • Diagnosed with Parkinson's disease
  • Diagnosed with Atypical Parkinsonism, referring to conditions that have symptoms similar to Parkinson's, including:

o Multiple system atrophy

o Progressive supranuclear palsy

o Dementia with Lewy bodies

o Corticobasal degeneration

o Frontotemporal dementia

o REM sleep behavior disorder

  • Without Parkinson's disease or Atypical Parkinsonism, instead participating in C-OPN as a 'Healthy Control'

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Note: In order to enroll as a C-OPN Participant, you do not have to be treated at a movement disorder clinic affiliated with C-OPN, but just have to have the ability to visit a C-OPN Site in one of the above-mentioned cities for the in-person visit.

Exclusion

Exclusion Criteria:

  • Age 18 years or older (site dependent)

Study Design

Total Participants: 5000
Study Start date:
June 01, 2020
Estimated Completion Date:
December 31, 2025

Study Description

Becoming a C-OPN participant involves completing online questionnaires and 1 in-person visit. There are 3 key components:

  1.  C-OPN Database
  • Answer questions about yourself and your lifestyle, medical history, family history, current medications, and other symptoms you may or may not experience.
  • This can be done either online, or over the phone or in-person with a C-OPN Coordinator.
  • Information is also gathered from cognitive testing (MoCA) and motor assessment (MDS-UPDRS), both of which are done during the 1 in-person visit with a C-OPN Coordinator at one of the C-OPN Sites listed above.
  • All information stored in the database is de-identified (meaning removal of any person information).
  1.  C-OPN Biobank
  • Participants can choose to donate a blood sample, which would be drawn during the 1 in-person visit with a C-OPN Coordinator at one of the C-OPN Sites listed above.
  • Blood samples are processed into DNA, serum, and peripheral blood mononuclear cells (PBMC), and stored in Montreal, Quebec.
  • All blood samples stored in the biobank are de-identified (meaning removal of any person information).
  1.  C-OPN Registry
  • Participants can choose to be part of the C-OPN Registry, in which they opt to receive e-mail notifications about upcoming research studies looking to recruit participants.

We ask that participants enroll for a period of at least three years so that the C-OPN team can gather information on disease development and progression, as well as natural aging. Follow-up involves completing two questionnaires, either online or over the phone with the Site Coordinator, every 18 months. There is no in-person visit involved in the follow-up.

Connect with a study center

  • University of Toronto

    Toronto, Ontario M5G 1V7
    Canada

    Active - Recruiting

    19.94 miles

  • Western University

    London, Ontario N6A 3K7
    Canada

    Active - Recruiting

    85.28 miles

  • University of Ottawa

    Ottawa, Ontario K1N 6N5
    Canada

    Active - Recruiting

    239.5 miles

  • University of Montreal

    Montreal, Quebec H3N 1X7
    Canada

    Active - Recruiting

    331.26 miles

  • McGill University

    Montréal, Quebec H3A2B4
    Canada

    Active - Recruiting

    332.41 miles

  • Clinique Neuro-Lévis

    Levis, Quebec G6w 0m5
    Canada

    Active - Recruiting

    468.08 miles

  • Laval University

    Quebec City, Quebec H7S 1H3
    Canada

    Active - Recruiting

    473.29 miles

  • University of Alberta

    Edmonton, Alberta T6G2R3
    Canada

    Active - Recruiting

    1,677.51 miles

  • University of Calgary

    Calgary, Alberta T2N 1N4
    Canada

    Active - Recruiting

    1,680.15 miles

  • University of British Columbia

    Vancouver, British Columbia V6T1K2
    Canada

    Active - Recruiting

    2,084.83 miles

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