推进加拿大的帕金森病研究:加拿大开放帕金森网络(C-OPN)队列。

IF 4 3区 医学 Q2 NEUROSCIENCES Journal of Parkinson's disease Pub Date : 2024-01-01 DOI:10.3233/JPD-240213
Marisa Cressatti, Gabriel D Pinilla-Monsalve, Mathieu Blais, Catherine P Normandeau, Clotilde Degroot, Iris Kathol, Sarah Bogard, Anna Bendas, Richard Camicioli, Nicolas Dupré, 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
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引用次数: 0

摘要

背景:加强研究参与者、临床医生和研究人员之间的互动是推进帕金森病(PD)研究的当务之急。加拿大帕金森病开放网络(C-OPN)是一项全国性的努力,它将帕金森病社区与十所经认证的大学和运动障碍研究中心联系起来,在进行本分析时,这些大学和研究中心遍布不列颠哥伦比亚省、阿尔伯塔省、安大略省和魁北克省:我们的目的是将 C-OPN 展示为加强全国合作、加速帕金森病研究的典范,并对已收集的数据集进行初步概述:C-OPN 数据库包括有关人口统计学、症状和体征、治疗方法和标准化评估的去标识化数据。此外,该数据库还收集静脉血生物材料,如用于分析 DNA、外周血单核细胞 (PBMC) 和血清的生物材料。研究人员可通过基于网络的数据管理系统(包括 REDCap.Results)获取 C-OPN 资源,用于多中心研究:截至 2023 年 11 月,C-OPN 共招募了 1,505 名白血病患者。男女比例为 1.77:1,83%(n = 1098)的参与者居住在城市地区,82%(n = 1084)的参与者接受过高等教育。确诊时的平均年龄为 60.2±10.3 岁。在此,我们对C-OPN帕金森病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地区差异。截至2024年4月,已有32个研究项目利用了C-OPN资源:C-OPN代表着一个促进多学科和多地点研究的全国性平台,该平台重点关注帕金森病,以促进创新、探索护理模式以及加拿大科学家之间的合作。
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Advancing Parkinson's Disease Research in Canada: The Canadian Open Parkinson Network (C-OPN) Cohort.

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.

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来源期刊
CiteScore
8.40
自引率
5.80%
发文量
338
审稿时长
>12 weeks
期刊介绍: The Journal of Parkinson''s Disease (JPD) publishes original research in basic science, translational research and clinical medicine in Parkinson’s disease in cooperation with the Journal of Alzheimer''s Disease. It features a first class Editorial Board and provides rigorous peer review and rapid online publication.
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