Department of Clinical Neurosciences, University of Calgary, Calgary, AB, Canada.
Hotchkiss Brain Institute, Cumming School of Medicine, Calgary, AB, Canada.
J Parkinsons Dis. 2024;14(7):1481-1494. doi: 10.3233/JPD-240213.
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.
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.
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.
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.
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.
加强研究参与者、临床医生和研究人员之间的互动对于推进帕金森病（PD）研究至关重要。加拿大开放帕金森网络（C-OPN）是一项全国性的努力，将 PD 社区与十个认可的大学和运动障碍研究中心连接起来，这些中心分布在不列颠哥伦比亚省、艾伯塔省、安大略省和魁北克省。
我们的目标是展示 C-OPN 作为加强国家合作以加速 PD 研究的范例，并提供已经收集的数据组的初步概述。
C-OPN 数据库包含有关人口统计学、症状和体征、治疗方法以及标准化评估的去识别数据。此外，它还收集静脉血衍生的生物材料，例如用于分析 DNA、外周血单核细胞（PBMC）和血清。C-OPN 资源可供研究人员使用，通过基于网络的数据管理系统提供多中心研究，包括 REDCap。
截至 2023 年 11 月，C-OPN 已经招募了 1505 名 PD 参与者。男女比例为 1.77:1，83%（n=1098）居住在城市地区，82%（n=1084）接受过高等教育。诊断时的平均年龄为 60.2±10.3 岁。在这里，我们对 C-OPN PD 队列的分析包括环境因素、运动和非运动症状、疾病管理以及各省之间的区域差异。截至 2024 年 4 月，已有 32 个研究项目利用了 C-OPN 资源。
C-OPN 代表了一个促进多学科和多地点研究的国家平台，重点是 PD，以促进创新、探索护理模式以及加拿大科学家之间的合作。
