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

Area of Science:

• Neuroscience
• Data Science
• Bioinformatics

Background:

• The Montreal Neurological Institute-Hospital (The Neuro) committed to Open Science in 2016.
• Open Science requires comprehensive infrastructure beyond individual efforts, encompassing governance, ethics, and resources.
• Neurological diseases often present research challenges due to rare patient populations.

Purpose of the Study:

• To describe the establishment and capabilities of The Neuro's institutional biospecimen and clinical data repository (C-BIG).
• To outline the transition to Open Science, focusing on data sharing for neurological disease research.
• To present C-BIG as a scalable model for multimodal data collection, curation, and dissemination.

Main Methods:

• Development of the C-BIG repository to collect biospecimen, clinical, imaging, and genetic data.
• Implementation of governance, ethics, computational, and workflow structures for effective data management.
• Establishment of data access layers, including Registered Access and planned fully open data release.

Main Results:

• The C-BIG repository aggregates multimodal data from patients with neurological diseases and healthy controls.
• A Registered Access layer was launched in November 2020, with open data planned for May 2021.
• The repository serves as a scalable model for institutional data sharing.

Conclusions:

• The Neuro's Open Science initiative, supported by the C-BIG repository, aims to advance understanding and treatment of neurological disorders.
• Effective data aggregation and sharing are crucial for overcoming research challenges in rare diseases.
• The C-BIG repository provides a robust infrastructure for multimodal data dissemination to academic and industry researchers.