The C-BIG Repository: an Institution-Level Open Science Platform

• Published in: Neuroinformatics (Totowa, N.J.) N.J.), 2022-01, Vol.20 (1), p.139-153
• Main Authors: Das, Samir, Abou-Haidar, Rida, Rabalais, Henri, Sun, Sonia Denise Lai Wing, Rosli, Zaliqa, Chatpar, Krishna, Boivin, Marie-Noëlle, Tabatabaei, Mahdieh, Rogers, Christine, Legault, Melanie, Lo, Derek, Degroot, Clotilde, Dagher, Alain, Dyke, Stephanie O. M., Durcan, Thomas M., Seyller, Annabel, Doyon, Julien, Poupon, Viviane, Fon, Edward A., Genge, Angela, Rouleau, Guy A., Karamchandani, Jason, Evans, Alan C.
• Format: Article
• Language: English
• Subjects: Bioinformatics; Biomedical and Life Sciences; Biomedicine; Computational Biology/Bioinformatics; Computational neuroscience; Computer Appl. in Life Sciences; Humans; Information Dissemination; Neurological diseases; Neurology; Neurosciences; Open access; Original; Original Article; Patients; Software
• ISSN: 1539-2791; 1559-0089
• DOI: 10.1007/s12021-021-09516-9

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.