ADVANCING PARKINSON’S DISEASE RESEARCH IN CANADA: THE CANADIAN OPEN PARKINSON NETWORK (C-OPN) COHORT
Authors: Cressatti Marisa , Pinilla-Monsalve Gabriel D. , Blais Mathieu , Normandeau Catherine P. , Degroot Clotilde , Kathol Iris , Bogard Sarah , Bendas Anna , Camicioli Richard , Dupré Nicolas , Gan-Or Ziv , Grimes David A. , Kalia Lorraine V. , MacDonald Penny A. , McKeown Martin J. , Martino Davide , Miyasaki Janis M. , Schlossmacher Michael G. , Jon Stoessl A. , Strafella Antonio P. , Fon Edward A. , Monchi Oury 
Published: May 2024

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 researchers 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.

PLAIN LANGUAGE SUMMARY

Teamwork and communication between people living with Parkinson’s disease (PD), doctors, 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.