. 2024;14(7):1481-1494.

doi: 10.3233/JPD-240213.

Advancing Parkinson's Disease Research in Canada: The Canadian Open Parkinson Network (C-OPN) Cohort

Marisa Cressatti^{1

2

3}, Gabriel D Pinilla-Monsalve⁴, Mathieu Blais⁵, Catherine P Normandeau^{1

2}, Clotilde Degroot⁶, Iris Kathol^{1

2}, Sarah Bogard⁶, Anna Bendas⁴, Richard Camicioli^{7

8

9}, Nicolas Dupré^{5

10}, Ziv Gan-Or⁶, David A Grimes¹¹, Lorraine V Kalia^{12

13

14

15}, Penny A MacDonald^{16

17}, Martin J McKeown¹⁸, Davide Martino^{1

2}, Janis M Miyasaki^{7

8

9}, Michael G Schlossmacher¹¹, A Jon Stoessl¹⁸, Antonio P Strafella^{13

15

19

20}, Edward A Fon⁶, Oury Monchi^{1

2

4

6

21}

Affiliations

¹ Department of Clinical Neurosciences, University of Calgary, Calgary, AB, Canada.
² Hotchkiss Brain Institute, Cumming School of Medicine, Calgary, AB, Canada.
³ Department of Medicine, School of Medicine, Queen's University, Kingston, ON, Canada.
⁴ Centre de Recherche de l'Institut universitaire de gériatrie de Montréal, Montréal, QC, Canada.
⁵ Axe Neurosciences du Centre de recherche du CHU de Québec - Université Laval, Québec, QC, Canada.
⁶ McGill Parkinson Program, Neurodegenerative Diseases Group, Department of Neurology and Neurosurgery, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
⁷ Department of Medicine, Division of Neurology, University of Alberta, Edmonton, AB, Canada.
⁸ Parkinson and Movement Disorders Program and the Complex Neurologic Symptoms Clinic, Kaye Edmonton Clinic, University of Alberta, Edmonton, AB, Canada.
⁹ Neuroscience and Mental Health Institute, University of Alberta, Edmonton, AB, Canada.
¹⁰ Faculty of Medicine, Department of Medicine, Université Laval, Québec, QC, Canada.
¹¹ Division of Neurology and Program in Neuroscience, The Ottawa Hospital, University of Ottawa Brain and Mind Research Institute, Ottawa, ON, Canada.
¹² Krembil Research Institute, Toronto Western Hospital, University Health Network, Toronto, ON, Canada.
¹³ Morton and Gloria Shulman Movement Disorder Unit and the E. J. Safra Parkinson Disease Program, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, ON, Canada.
¹⁴ Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada.
¹⁵ Division of Neurology, Department of Medicine, University of Toronto, Toronto, ON, Canada.
¹⁶ Brain and Mind Institute, University of Western Ontario, London, ON, Canada.
¹⁷ Department of Clinical Neurological Sciences, University of Western Ontario, London, ON, Canada.
¹⁸ Pacific Parkinson's Research Centre, Djavad Mowafaghian Centre for Brain Health, University of British Columbia & Vancouver Coastal Health, Vancouver, BC, Canada.
¹⁹ Division of Brain, Imaging and Behaviour - Systems Neuroscience, Krembil Brain Institute, University Health Network, University of Toronto, Toronto, ON, Canada.
²⁰ Brain Health Imaging Centre, Campbell Family Mental Health Research Institute, CAMH, University of Toronto, Toronto, ON, Canada.
²¹ Département de radiologie, radio-oncologie et médecine nucléaire, Faculté de médecine, Université de Montréal, Montréal, QC, Canada.

PMID: 39302382
PMCID: PMC11492019
DOI: 10.3233/JPD-240213

Advancing Parkinson's Disease Research in Canada: The Canadian Open Parkinson Network (C-OPN) Cohort

Marisa Cressatti et al. J Parkinsons Dis. 2024.

. 2024;14(7):1481-1494.

doi: 10.3233/JPD-240213.

Authors

Affiliations

¹ Department of Clinical Neurosciences, University of Calgary, Calgary, AB, Canada.
² Hotchkiss Brain Institute, Cumming School of Medicine, Calgary, AB, Canada.
³ Department of Medicine, School of Medicine, Queen's University, Kingston, ON, Canada.
⁴ Centre de Recherche de l'Institut universitaire de gériatrie de Montréal, Montréal, QC, Canada.
⁵ Axe Neurosciences du Centre de recherche du CHU de Québec - Université Laval, Québec, QC, Canada.
⁶ McGill Parkinson Program, Neurodegenerative Diseases Group, Department of Neurology and Neurosurgery, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
⁷ Department of Medicine, Division of Neurology, University of Alberta, Edmonton, AB, Canada.
⁸ Parkinson and Movement Disorders Program and the Complex Neurologic Symptoms Clinic, Kaye Edmonton Clinic, University of Alberta, Edmonton, AB, Canada.
⁹ Neuroscience and Mental Health Institute, University of Alberta, Edmonton, AB, Canada.
¹⁰ Faculty of Medicine, Department of Medicine, Université Laval, Québec, QC, Canada.
¹¹ Division of Neurology and Program in Neuroscience, The Ottawa Hospital, University of Ottawa Brain and Mind Research Institute, Ottawa, ON, Canada.
¹² Krembil Research Institute, Toronto Western Hospital, University Health Network, Toronto, ON, Canada.
¹³ Morton and Gloria Shulman Movement Disorder Unit and the E. J. Safra Parkinson Disease Program, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, ON, Canada.
¹⁴ Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada.
¹⁵ Division of Neurology, Department of Medicine, University of Toronto, Toronto, ON, Canada.
¹⁶ Brain and Mind Institute, University of Western Ontario, London, ON, Canada.
¹⁷ Department of Clinical Neurological Sciences, University of Western Ontario, London, ON, Canada.
¹⁸ Pacific Parkinson's Research Centre, Djavad Mowafaghian Centre for Brain Health, University of British Columbia & Vancouver Coastal Health, Vancouver, BC, Canada.
¹⁹ Division of Brain, Imaging and Behaviour - Systems Neuroscience, Krembil Brain Institute, University Health Network, University of Toronto, Toronto, ON, Canada.
²⁰ Brain Health Imaging Centre, Campbell Family Mental Health Research Institute, CAMH, University of Toronto, Toronto, ON, Canada.
²¹ Département de radiologie, radio-oncologie et médecine nucléaire, Faculté de médecine, Université de Montréal, Montréal, QC, Canada.

PMID: 39302382
PMCID: PMC11492019
DOI: 10.3233/JPD-240213

Abstract

Background: Enhancing the interactions between study participants, clinicians, and investigators is imperative for advancing Parkinson's disease (PD) research. The Canadian Open Parkinson Network (C-OPN) stands as a nationwide endeavor, connecting the PD community with ten accredited universities and movement disorders research centers spanning, at the time of this analysis, British Columbia, Alberta, Ontario, and Quebec.

Objective: Our aim is to showcase C-OPN as a paradigm for bolstering national collaboration to accelerate PD research and to provide an initial overview of already collected data sets.

Methods: The C-OPN database comprises de-identified data concerning demographics, symptoms and signs, treatment approaches, and standardized assessments. Additionally, it collects venous blood-derived biomaterials, such as for analyses of DNA, peripheral blood mononuclear cells (PBMC), and serum. Accessible to researchers, C-OPN resources are available through web-based data management systems for multi-center studies, including REDCap.

Results: As of November 2023, the C-OPN had enrolled 1,505 PD participants. The male-to-female ratio was 1.77:1, with 83% (n = 1098) residing in urban areas and 82% (n = 1084) having pursued post-secondary education. The average age at diagnosis was 60.2±10.3 years. Herein, our analysis of the C-OPN PD cohort encompasses environmental factors, motor and non-motor symptoms, disease management, and regional differences among provinces. As of April 2024, 32 research projects have utilized C-OPN resources.

Conclusions: C-OPN represents a national platform promoting multidisciplinary and multisite research that focuses on PD to promote innovation, exploration of care models, and collaboration among Canadian scientists.

Keywords: Canada; Parkinson’s disease; cohort; open science; research platform.

Plain language summary

Teamwork and communication between people living with Parkinson’s disease (PD), physicians, health professionals, and research scientists is important for improving the lives of those living with this condition. The Canadian Open Parkinson Network (C-OPN) is a Canada-wide initiative, connecting the PD community with ten accredited universities and movement disorders research centers located in – at the time of this analysis–British Columbia, Alberta, Ontario, and Quebec. The aim of this paper is to showcase C-OPN as a useful resource for physician and research scientists studying PD in Canada and around the world, and to provide snapshot of already collected data. The C-OPN database comprises de-identified (meaning removal of any identifying information, such as name or date of birth) data concerning lifestyle, disease symptoms, treatments, and results from standardized tests. It also collects blood samples for further analysis. As of November 2023, C-OPN had enrolled 1,505 PD participants across Canada. Most of the participants were male (64%), living in urban areas (83%), and completed post-secondary education (82%). The average age at diagnosis was 60.2±10.3 years. In this paper, we look at environmental factors, motor and non-motor symptoms, different disease management strategies, and regional differences between provinces. In conclusion, C-OPN represents a national platform that encourages multidisciplinary and multisite research focusing on PD to promote innovation and collaboration among Canadian scientists.

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Conflict of interest statement

JMM has grants from Patient Centered Outcomes Research Institute (2021–2023), Parkinson Foundation: PD GENEration (2023-present), the Canadian Consortium on Neurodegeneration in Aging (2018-present), and Brain Canada (2018-present). JMM serves as a US delegate of Oxford University Press (2022–2026). JMM serves as Vice President of the American Academy of Neurology and is on the Board of Directors of Parkinson Foundation.

APS was a past consultant for Hoffman La Roche; received honoraria from GE Health Care Canada LTD, Hoffman La Roche. APS serves on the Board Directors of Parkinson Canada and Canadian Academy Health Sciences. APS is supported by Canadian Institutes of Health Research (CIHR) (PJT-173540) and Krembil-Rossy Chair program.

DAG has received honorariums for speaking from Ipsen and for consulting from Abbvie. DAG is involved in clinical trials via CIHR, Cerevel Therapeutics, Hoffman La Roche, UCB Biopharma, and Bial R&D Investments. DAG has also received grants from CIHR, Parkinson Canada, Brain Canada, Parkinson Research Consortium, EU Joint Programme – Neurodegenerative Disease Research, uOBMRI, and NIH.

ZGO, LVK, and APS are Editorial Board Members of this journal but were not involved in the peer-review process of this article nor had access to any information regarding its peer-review.

MC, GPM, MB, CPN, CD, IK, SB, AB, RC, ND, PAM, MJM, DM, MGS, AJS, EAF, and OM have no conflicts of interest to report pertaining to this study.

Figures

**Fig. 1**
Breakdown of C-OPN workflow for collection of participant data and biosamples. Blue boxes, N = 1362; grey box, N = 957 (A). Participant distribution by enrollment site (B) and location (postal code) (C), N = 1505.

**Fig. 2**
Comorbidities of C-OPN participants with PD. N = 1250.

**Fig. 3**
Family history of PD among C-OPN participants. Variable N (962–1247).

**Fig. 4**
Cardinal motor features of PD. Top reported symptoms at onset and enrollment, N = 1210 and 1128, respectively; handedness, N = 1142; dyskinesia, N = 1081; freezing, N = 1087; falls, N = 1104 (A); Hoehn & Yahr stage, N = 711 (B); MDS-UPDRS score, N = 826 (Part I), N = 827 (Part II), N = 854 (Part III), and N = 818 (Part IV) (C).

**Fig. 5**
Common non-motor features of PD. Hyposmia, N = 1156; sleep disturbances, N = 1210 (difficulties falling asleep), N = 1178 (difficulties staying asleep), and N = 1187 (dream enacting behavior); constipation, N = 1247; pain, N = 1129; depression, N = 1109; anxiety, N = 1109; apathy, N = 1109; informed diagnosis of dementia, N = 1077; psychosis, N = 1109 (A); MoCA, N = 1018 (B).

**Fig. 6**
Common environmental factors potentially contributing to PD. Informed welding, N = 1315; informed pesticide exposure, N = 1313; smoking, N = 1313; coffee, N = 1316; alcohol, N = 1309; cannabis, N = 1309; head trauma, N = 1265 (serious head injury) and N = 1294 (contact sports).

**Fig. 7**
Key features of C-OPN participants with PD in the four most populous Canadian provinces. Description by province of age at onset (A), disease duration (B), male-to-female ratio (C), and MDS-UPDRS parts 1–3 (D). Multinomial comparisons by clinical features (E), and key environmental factors (F); within the forest plots, significant comparisons depicted with a circle (o) are significant (p < 0.050), while those with a crossed square (⊠) are not.

See this image and copyright information in PMC

References

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Advancing Parkinson's Disease Research in Canada: The Canadian Open Parkinson Network (C-OPN) Cohort

Affiliations

Advancing Parkinson's Disease Research in Canada: The Canadian Open Parkinson Network (C-OPN) Cohort

Authors

Affiliations

Abstract

Plain language summary

Conflict of interest statement

Figures

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical

Research Materials

Miscellaneous