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 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 fill out the following 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

  • 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. 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

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 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/