Open Science Collection of Clinical, Biological, Imaging, and Genetic (C-BIG) Data and Samples

Poster No:

2238 

Submission Type:

Abstract Submission 

Authors:

Nicolas Ferry1, Marie-Noëlle Boivin1, Peng Wang1, Kevin LaFleur1, Amina Boulid2, Jean-Robert Kwizera1, Rida Abou-Haidar3, Samir Das4, Patrick Bermudez5, Alan Evans6, Jason Karamchandani7

Institutions:

1C-BIG, Montreal Neurological Institute, McGill University,, Montreal, Quebec, 2C-BIG, Montreal Neurological Institute, McGill University, Montreal, Quebec, 3McGill Centre for Integrative Neuroscience, Montreal, Quebec, 4McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montreal, Quebec, 5McGill Center for Integrative Neurosciences (MCIN), Montreal Neurological Institute, Montreal, Quebec, 6McGill Centre for Integrative Neuroscience (MCIN), Montreal, Quebec, 7Department of Pathology, Neurology & Neuroscience Montreal Neurological Institute, Montreal, Quebec

First Author:

Nicolas Ferry  
C-BIG, Montreal Neurological Institute, McGill University,
Montreal, Quebec

Co-Author(s):

Marie-Noëlle Boivin  
C-BIG, Montreal Neurological Institute, McGill University,
Montreal, Quebec
Peng Wang  
C-BIG, Montreal Neurological Institute, McGill University,
Montreal, Quebec
Kevin LaFleur  
C-BIG, Montreal Neurological Institute, McGill University,
Montreal, Quebec
Amina Boulid  
C-BIG, Montreal Neurological Institute, McGill University
Montreal, Quebec
Jean-Robert Kwizera  
C-BIG, Montreal Neurological Institute, McGill University,
Montreal, Quebec
Rida Abou-Haidar  
McGill Centre for Integrative Neuroscience
Montreal, Quebec
Samir Das  
McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University
Montreal, Quebec
Patrick Bermudez  
McGill Center for Integrative Neurosciences (MCIN), Montreal Neurological Institute
Montreal, Quebec
Alan Evans  
McGill Centre for Integrative Neuroscience (MCIN)
Montreal, Quebec
Jason Karamchandani  
Department of Pathology, Neurology & Neuroscience Montreal Neurological Institute
Montreal, Quebec

Introduction:

The Open Science Clinical, Biological, Imaging, and Genetic (C-BIG) collection at the Montreal Neurological Institute (The Neuro) has successfully recruited nearly 4000 participants, encompassing individuals with neurological conditions and healthy controls since 2016. Leveraging LORIS1 (Das et al., 2012), an open-source database developed at McGill University over two decades, this open biobank harmoniously integrates patient and sample data. The aim is to empower scientists globally, operating within an Open Science framework, to conduct cutting-edge research advancing our understanding of neurological diseases and exploring therapeutic interventions.

Methods:

In the past year, LORIS introduced version 24.1, tailored as a biospecimen module for internal use by the C-BIG biobank. This module includes sample processing data and metadata for biological materials. A dedicated module collects de-identified patient information, such as phenotypic details, diagnoses, genetic reports, and participant enrollment details. The imaging module consolidates defaced scans (CT-scan, PET, MRI), linked via unique patient identifiers to the broader dataset.
Within McGill's McConnell Brain Imaging Center, C-BIG serves as a pivotal database for storing scans from thousands of patients. On the patient-facing side, a new demographic data collection instrument was created, ensuring compliance with Equity, Diversity, and Inclusion guidelines. A patient portal bridges the gap between the patient-clinician database2 (OPAL) and the research database (LORIS), facilitating data analysis.
Specifically for human induced pluripotent stem cells (iPSCs), a Data Query Tool captures historic data and Quality Control information for internal and external users. C-BIG's genetic data is openly released worldwide, linked to C-BRAIN (cbrain.ca) for high performance computing.
Additionally, C-BIG's genetic data has leveraged the CBRAIN ecosystem to process and store large amounts of genetic information. Specifically, by breaking down each type of data available by cohorts using a data dictionary, harmonizing the different contents, uploading datasets using DataLad and creating metadata files to describe the data to the different users, C-BIG also uses the Canadian Open Neuroscience Platform to publish datasets and generate Archival Resource Key as a permanent identifiers on Amyotrophic Lateral Sclerosis genetic and Parkinson's Disease-MRI data.

Results:

The C-BIG repository utilizes an institutional version of LORIS for data access, featuring a Data Query Tool with three levels of access: Open, Registered, and Controlled. Open access allows browsing of insensitive metadata, including a data dictionary. Registered access includes low-risk data with aggregated clinical information, raw data, defaced images, and laboratory analyses. Controlled access necessitates researchers to submit project descriptions for review by a Tissue and Data Committee before signing a non-exclusive Open Transfer Agreement.
Collaborating with over 90 partners, C-BIG emphasizes compliance with Open Science principles, requiring partners to provide summary data reports within a specified timeframe if no publication occurs.

Conclusions:

The C-BIG Repository aspires to enhance material and data collection under Open Science principles, aiming for a comprehensive dataset on diverse neurological conditions. The overarching goal is to contribute to global translational neuroscience research by broadening participant recruitment, integrating extensive information into the multimodal database, and accelerating collaborative research efforts across diverse partners.

Genetics:

Genetics Other

Neuroinformatics and Data Sharing:

Databasing and Data Sharing 1
Workflows
Informatics Other

Novel Imaging Acquisition Methods:

Multi-Modal Imaging 2

Keywords:

Data analysis
Data Organization
Data Registration
Degenerative Disease
MRI
Neurological
Open Data
Open-Source Software
Workflows

1|2Indicates the priority used for review

Provide references using author date format

Das, S., et al. (2012). LORIS: A web-based data management system for multi-center studies. Front. Neuroinformatics, 20 (Part B).
Kildea J., et al. (2019). Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design J Med Internet Res 2019;21(2):e11371
Harding RJ, et al. (2023) The Canadian Open Neuroscience Platform—An open science framework for the neuroscience community. PLoS Comput Biol 19(7): e1011230