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:

Title

First Name (required)

Last Name (required)

Your Institutional Email Address (required)

Are you a C-OPN member ? (required)
YesNo

Organization/Institution (required)

Your Position (required)

Examples: PI, Clinician, PhD/MSc student, Post-doc

Project Principal Investigator (First name, Last name)

Project title

Project description (150-200 words describing goal and main outcomes)

Type of request

Message

Please include additional details pertaining to the specific resources in which you require access (i.e. specific datapoints, biobank sample type [DNA, serum, PBMCs, plasma], and/or local vs. national study promotion).

File Upload (max 2Mo).

Please attach a copy of the Research Ethics Board (REB) approval certificate for this project.

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 REDCap platform. To learn more or to create an account, visit: https://redcap.ucalgary.ca/

Demographic Information

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

For full demographic REDCap instrument see link

Epidemiological Information

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

Clinical Information

Diagnosis confirmation (level of certainty and method of confirmation)
Age at onset
Age at diagnosis
Duration of disease (Parkinson’s)
Atypical Parkinsonism (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 Freezing of Gait
Presence of motor fluctuations
Psychiatric disorders (anxiety, depression, hallucinations)
Cognitive impairment (yes or no)
Presence of dementia (yes or no)
Duration of disease (dementia)
Surgeries for PD
Hospital admission history
Current medication
LEDD

For full clinical REDCap instrument see link

Results To The Following Assessments

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
Plasma 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.

REDCap 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 REDCap platform (https://redcap.ucalgary.ca/).

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]

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