Contact Us
Our Location

Health Sciences Centre, University of Calgary, Calgary, Alberta

Telephone Number

(403) 210-7570

Email Address

national.manager@copn-rpco.ca

Research

Request Access

One of the main goals of C-OPN is to facilitate Parkinson’s research. To do so, the Network aims to help with research, clinical or survey-based questionnaire studies. Researchers and companies wishing to conduct studies using C-OPN resources will be asked to complete a Data Access Request Form (see below). If you have any questions, please do not hesitate to reach out to the National Manager at national.manager@copn-rpco.ca. To check out the research projects already leveraging C-OPN resources across Canada and around the world, click here.

Clinicians and researchers requesting access to the C-OPN database, biobank, and registry, please complete the following Data Access Request Form:




    Available Information

    Registry*

    • Participant contact information (can be used to send information to participants about studies or clinical trials)
      *Managed by local site and sharing of information subject to institutional policies as well as the C-OPN Data Sharing Policy.

    Database

    C-OPN de-identified data is now more easily accessible to C-OPN members via the C-OPN LORIS platform. To learn more or to create an account, visit: https://copn.loris.ca/

    • Sex
    • Age at study visit
    • Living situation
    • Laterality (left or right)
    • Mother tongue/spoken language
    • Education level

    For full demographic REDCap instrument see link

    • Environmental factors (history of living near a factory or farm, exposure to pesticides or welding materials)
    • Exercise routine
    • Therapies
    • Smoking (yes/no/formerly)
    • Alcohol consumption (yes/no/formerly)
    • Coffee consumption (yes/no/formerly)
    • Cannabis consumption (yes/no/formerly)
    • Recreational drug consumption (yes/no/formerly)
    • Head trauma history
    • Contact sport history
    • Sleep history
    • Pain history
    • Family history of Parkinson’s disease

    For full epidemiological REDCap instrument see link

    • Diagnosis confirmation (level of certainty and method of confirmation)
    • Age at onset
    • Age at diagnosis
    • Duration of disease (Parkinson’s)
    • Parkinson Plus Syndrome (MSA/PSP/CBS/DLB/FTD/ET/RBD)
    • Hoehn and Yahr
    • Asymmetry of symptoms
    • First symptoms (tremor, muscle stiffness, bradykinesia, postural instability, gait problems)
    • Duration since first symptoms appeared
    • Current symptoms (tremor, muscle stiffness, bradykinesia, postural instability, gait problems)
    • Presence of other symptoms (constipation, light-headed, loss of sense of smell, forgetfulness, short term memory loss)
    • Presence of dyskinesia
    • Presence of fluctuations
    • Psychiatric disorders (anxiety, depression, hallucinations)
    • Cognitive impairment (yes or no)
    • Presence of dementia (yes or no)
    • Duration of disease (dementia)
    • History of surgeries
    • Hospital admission history
    • Current medication

    For full clinical REDCap instrument see link

    • MoCA
    • MDS-UPDRS
    • MBI-C
    • Clock Drawing Test
    • Brixton Test
    • Stroop Colour and Word Test
    • Trails A B Test
    • WAIS IV Digit Span Test
    • Letter Fluency Test (FAS)
    • Semantic Fluency Test
    • Boston Naming Test
    • Rey Complex Figure Test
    • Hopkins Verbal Learning Test Revised
    • Cognitive status (mild cognitive impairment or dementia)
    • EHI
    • BAI
    • BDI-II
    • Apathy Scale
    • Fatigue Severity Scale
    • Parkinson Anxiety Scale
    • PDQ-8
    • PDQ-39
    • Schwab and England Activities of Daily Living
    • SCOPA-AUT-EN
    • Multidimensional Caregiver Strain Index

    Biobank

    • DNA samples
    • PBMC samples
    • Serum samples

    Infrastructures

    National Registry

    A unified national registry to facilitate collaborations between researchers and participants on large-scale projects and clinical trials across Canada.

    Biobank

    A research bank of biological specimens (eg. blood) that can be used for a variety of analyses (including genetic) by the Canadian scientific community and beyond.

    De-identified Database

    A large database containing demographic, medical, and cognitive information from participants over time to enable researchers to support cutting edge scientific investigations. All de-identified data from C-OPN participants is available to C-OPN members via the C-OPN LORIS platform (https://copn.loris.ca/). This will also eventually include imaging and second-generation wearable device data.



    Sites

    Canadian Open Parkinson Network Sites

    C-OPN includes 11 major Movement Disorders programs across 5 provinces. The 11 centres include:



    Click on the pins for site information

    Infrastructures

    National Registry

    Led by Dr. Camicioli, Dr. Dupré, Dr. Grimes, Dr. Lafontaine, Dr. Maestre, Dr. Martino, Dr. McKeown, Dr. Miyasaki, Dr. Panisset, Dr. Strafella.

    A unified national registry to facilitate collaborations between researchers and participants on large-scale projects and clinical trials across Canada.

    De-identified Database

    Led by Dr. Evans, Dr. McKeown, Dr. Camicioli.

    A large database containing demographic, medical, and cognitive information from participants over time to enable researchers to support cutting edge scientific investigations. This will also include imaging and second-generation wearable device data.

    Biorepository

    Led by Dr. Gan-Or, Dr. Park, Dr. Rouleau, Dr. Schlossmaker.

    A research bank of biological specimens (example: blood) that can be used for a variety of analyses (including genetic) by the Canadian scientific community and beyond.

    Sites

    Canadian Open Parkinson Network Sites

    C-OPN includes 11 major Movement Disorders programs across 5 provinces. The 11 centres include:

    [CONSIDER INTRODUCING MAP IMAGE /MAP AS NAVIGATION TOOL HERE]

    1. The CaPRI/Movement Disorders Brain and Mental Health team of the Hotchkiss Brain Institute and the linked Movement Disorders program at the University of Calgary (main coordinating site)

    EN: https://capriresearch.org/

    EN: https://www.ucalgary.ca/dcns/programs/movementdisorders

    EN: https://hbi.ucalgary.ca/our-research/healthy-brain-aging

     

    2. The Pacific Parkinson Research Centre (University of British Columbia, UBC Hospital)

    EN: https://www.centreforbrainhealth.ca/clinics/movement-disorders

     

    1. The Movement Disorders program (University of Alberta)

    EN: https://www.ualberta.ca/department-of-medicine/movement-disorders

    EN: https://www.ualberta.ca/department-of-medicine/movement-disorders/research

     

    1. The Movement Disorders Centre at the Toronto Western Hospital (University Health Network, University of Toronto)

    EN: https://www.uhn.ca/KNC/PatientsFamilies/Clinics_Tests/Movement_Disorders

    EN: https://www.uhnresearch.ca/division/13835

     

    1. The Parkinson Research Consortium (Ottawa University)

    EN: https://www.ottawahospital.on.ca/en/clinical-services/deptpgrmcs/clinics-and-services/movement-disorders/

    FR: https://www.ottawahospital.on.ca/fr/services-cliniques/deptpgrmcs/cliniques-et-services/clinique-des-troubles-du-mouvement/

    EN: http://www.ohri.ca/prc/

    FR: http://www.irho.ca/crp/

     

    1. L’Unité des Troubles du Mouvement André Barbeau (Université de Montréal)

    FR: https://repertoire.chumontreal.qc.ca/fiches/troubles-du-mouvement

     

    FR: https://www.chumontreal.qc.ca/crchum/axes-de-recherche

    EN: https://www.chumontreal.qc.ca/en/crchum/research-themes

     

    1. The McGill Parkinson Program at the Montreal Neurological Institute and Hospital (MNI/H) and the Montreal General Hospital (McGill University)

    EN: https://www.mcgill.ca/neuro/patients-visitors/clinics-and-health-care/movement-disorders

    FR: https://www.mcgill.ca/neuro/fr/patients/cliniques-and-soins-de-sante/troubles-du-mouvement

    EN: https://www.mcgill.ca/neuro/people/field_mprofile_research_areas/neurodegenerative_disorders

    FR : https://www.mcgill.ca/neuro/fr/people/field_mprofile_research_areas/neurodegenerative_disorders

     

    1. La Clinique des Troubles du Mouvement du Centre Hospitalier Universitaire de Québec (CHU de Québec -Université Laval)

    FR: http://www.crchudequebec.ulaval.ca/recherche/axes/neurosciences/

    EN: http://www.crchudequebec.ulaval.ca/en/research/axis/neuroscience/