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

Infrastructures

National Patient Registry

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

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

Biobank

Led by Dr. Gan-Or, Dr. Park, Dr. Rouleau, and Dr. Schlossmacher.

A research bank of patient 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

Led by Dr. Evans, Dr. McKeown, and 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.

Sites

Canadian Open Parkinson Network Sites

C-OPN includes 8 major Movement Disorders programs across 4 provinces. The 8 centres include:

  • Coordinating site
  • Canadian Open Parkinson
    Network Sites

Click on the pins for site information

Request Access

One of the main goals of C-OPN is to facilitates 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 after contacting the National Coordinator.

Clinicians and researchers, to request access to C-OPN registry, database, or biobank, please contact Catherine Normandeau (National Manager):

Available Information

Registry*

  • Patient contact information
    *Managed by local site and sharing of information subject to institutional policies

Database

  • 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

  • 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

  • Blood samples

Infrastructures

National Patient 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 patient 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 8 major Movement Disorders programs across 4 provinces. The 8 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)
  2. EN: https://capriresearch.org/

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

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

 

  1. 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/