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The Montreal Neurological Institute's CBIG collection and patient registry has gathered nearly 4000 participants with neurological conditions and healthy controls since 2016, using the LORIS open-source database to integrate patient and sample data for global research projects on neurological diseases. The biobank aims to collect de-identified biological material, clinical, imaging, and genetic information to advance understanding of neurological disorders under Open Science principles. The C-BIG Repository seeks to enhance material and data collection and sharing, with a long-term goal of expanding participant recruitment worldwide to accelerate research on neurological disorders. A study on ANXA11-linked ALS investigated protein composition and spatial distribution of aggregates in post-mortem brain tissue, revealing insights into the significance of CTF accumulation in the brain of FTLD-MND. [Extracted from the article]

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., (© 2021. The Author(s).)

The Canadian Institutes for Health Research (CIHR) launched the "International Collaborative Research Strategy for Alzheimer's Disease" as a signature initiative, focusing on Alzheimer's Disease (AD) and related neurodegenerative disorders (NDDs). The Canadian Consortium for Neurodegeneration and Aging (CCNA) was subsequently established to coordinate and strengthen Canadian research on AD and NDDs. To facilitate this research, CCNA uses LORIS, a modular data management system that integrates acquisition, storage, curation, and dissemination across multiple modalities. Through an unprecedented national collaboration studying various groups of dementia-related diagnoses, CCNA aims to investigate and develop proactive treatment strategies to improve disease prognosis and quality of life of those affected. However, this constitutes a unique technical undertaking, as heterogeneous data collected from sites across Canada must be uniformly organized, stored, and processed in a consistent manner. Currently clinical, neuropsychological, imaging, genomic, and biospecimen data for 509 CCNA subjects have been uploaded to LORIS. In addition, data validation is handled through a number of quality control (QC) measures such as double data entry (DDE), conflict flagging and resolution, imaging protocol checks, and visual imaging quality validation. Site coordinators are also notified of incidental findings found in MRI reads or biosample analyses. Data is then disseminated to CCNA researchers via a web-based Data-Querying Tool (DQT). This paper will detail the wide array of capabilities handled by LORIS for CCNA, aiming to provide the necessary neuroinformatic infrastructure for this nation-wide investigation of healthy and diseased aging.