Authors
Marisa Cressatti, Gabriel D Pinilla-Monsalve, Mathieu Blais, Catherine P Normandeau, Clotilde Degroot, Iris Kathol, Sarah Bogard, Anna Bendas, Richard Camicioli, Nicolas Dupre, Ziv Gan-Or, David A Grimes, Lorraine V Kalia, Penny A MacDonald, Martin J McKeown, Davide Martino, Janis M Miyasaki, Michael G Schlossmacher, A Jon Stoessl, Antonio P Strafella, Edward A Fon, Oury Monchi
Publication date
2024
Journal
medRxiv
Pages
2024.05. 10.24307196
Publisher
Cold Spring Harbor Laboratory Press
Description
Background
Enhancing the interactions between study participants, clinicians, and investigators is imperative for advancing Parkinsons 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 researchers have utilized C-OPN resources.
Conclusions
C-OPN represents a national platform …