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The C-BIG Repository: an Institution-Level Open Science Platform
Neuroinformatics ( IF 2.7 ) Pub Date : 2021-05-18 , DOI: 10.1007/s12021-021-09516-9
Samir Das 1, 2, 3 , Rida Abou-Haidar 1, 2 , Henri Rabalais 1, 2 , Sonia Denise Lai Wing Sun 2, 4 , Zaliqa Rosli 1, 2 , Krishna Chatpar 1, 2 , Marie-Noëlle Boivin 2 , Mahdieh Tabatabaei 2 , Christine Rogers 1, 2 , Melanie Legault 1, 2 , Derek Lo 1, 2 , Clotilde Degroot 2 , Alain Dagher 2, 3 , Stephanie O M Dyke 1, 2, 5 , Thomas M Durcan 4, 6 , Annabel Seyller 2 , Julien Doyon 2, 3 , Viviane Poupon 2 , Edward A Fon 2, 5 , Angela Genge 2, 4 , Guy A Rouleau 2 , Jason Karamchandani 2, 4 , Alan C Evans 1, 2, 3
Affiliation  

In January 2016, the Montreal Neurological Institute-Hospital (The Neuro) declared itself an Open Science organization. This vision extends beyond efforts by individual scientists seeking to release individual datasets, software tools, or building platforms that provide for the free dissemination of such information. It involves multiple stakeholders and an infrastructure that considers governance, ethics, computational resourcing, physical design, workflows, training, education, and intra-institutional reporting structures. The C-BIG repository was built in response as The Neuro’s institutional biospecimen and clinical data repository, and collects biospecimens as well as clinical, imaging, and genetic data from patients with neurological disease and healthy controls. It is aimed at helping scientific investigators, in both academia and industry, advance our understanding of neurological diseases and accelerate the development of treatments. As many neurological diseases are quite rare, they present several challenges to researchers due to their small patient populations. Overcoming these challenges required the aggregation of datasets from various projects and locations. The C-BIG repository achieves this goal and stands as a scalable working model for institutions to collect, track, curate, archive, and disseminate multimodal data from patients. In November 2020, a Registered Access layer was made available to the wider research community at https://cbigr-open.loris.ca, and in May 2021 fully open data will be released to complement the Registered Access data. This article outlines many of the aspects of The Neuro’s transition to Open Science by describing the data to be released, C-BIG’s full capabilities, and the design aspects that were implemented for effective data sharing.



中文翻译:

C-BIG 存储库:机构级开放科学平台

2016 年 1 月,蒙特利尔神经病学研究所医院 (The Neuro) 宣布自己是一个开放科学组织。这一愿景超越了个别科学家寻求发布个人数据集、软件工具或构建提供此类信息免费传播的平台的努力。它涉及多个利益相关者和一个考虑治理、道德、计算资源、物理设计、工作流、培训、教育和机构内报告结构的基础设施。C-BIG 存储库是作为 The Neuro 的机构生物样本和临床数据存储库而建立的,它收集神经系统疾病患者和健康对照者的生物样本以及临床、影像和遗传数据。它旨在帮助学术界和工业界的科学研究人员,促进我们对神经系统疾病的理解并加速治疗的发展。由于许多神经系统疾病非常罕见,由于患者人数少,它们给研究人员带来了一些挑战。克服这些挑战需要聚合来自不同项目和位置的数据集。C-BIG 存储库实现了这一目标,并作为一个可扩展的工作模型,供机构收集、跟踪、管理、存档和传播来自患者的多模式数据。2020 年 11 月,注册访问层在 https://cbigr-open.loris.ca 上提供给更广泛的研究社区,2021 年 5 月将发布完全开放的数据以补充注册访问数据。本文通过描述要发布的数据,概述了 The Neuro 向开放科学过渡的许多方面,

更新日期:2021-05-18
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