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Brain-CODE

Overview

Brain-CODE is the large-scale neuroinformatics platform of the Ontario Brain Institute (OBI), developed since 2012 for the collection, curation, federation, sharing, and analysis of multimodal neuroscience data across brain disorders. It serves 240+ researchers at 40+ institutions across Canada, storing data from OBI’s five Integrated Discovery Programs (IDPs) alongside data from other research teams.

Brain-CODE is one of the three primary data platforms integrated into the CONP (Canadian Open Neuroscience Platform) portal, alongside LORIS and XNAT, and has been an early implementor of FAIR Principles in clinical neuroscience since its inception.

Platform Architecture

Brain-CODE is built around five core components:

  • Data capture uses standardised web forms with Common Data Elements (CDEs) across OBI’s IDP studies, supporting clinical, neuroimaging, genetic, and behavioural data.
  • Data storage provides secure, encrypted storage on Canadian-hosted infrastructure with Privacy-by-Design and participant data de-identified.
  • Data integration enables cross-disorder harmonisation through shared CDEs, supporting queries across data modalities and brain disorders.
  • Analytics provides a web-based high-performance computing environment with advanced software for data management, curation, and analysis.
  • Federation provides bidirectional links to external databases including LORIS at McGill University, XNAT, and the CONP portal.

FAIR Implementation

Brain-CODE was one of the earliest platforms to operationalise FAIR Principles in clinical neuroscience (since 2012), documented in a 2023 paper in Frontiers in Neuroinformatics:

  • Findable: all data releases registered on CONP portal with DATS metadata; DOIs assigned; standardised metadata schemas
  • Accessible: web-based portal (https://www.braincode.ca); controlled access model with Data Access Committee review; standardised consent language for de-identified data reuse
  • Interoperable: Common Data Elements; LORIS and XNAT federation; DATS metadata model compatible with CONP portal indexing
  • Reusable: standardised consent for secondary research use; data governance policy published; data releases include documentation

Data Releases and Open Datasets

Brain-CODE hosts 10+ datasets on the CONP portal, including:

  • ONDRI (Ontario Neurodegenerative Disease Research Initiative): multimodal longitudinal data on Alzheimer’s, Parkinson’s, ALS, vascular and FTD
  • CHILD-BRIGHT: cerebral palsy; brain-based childhood disability
  • POND: neurodevelopmental disorders (autism, ADHD, OCD, fragile X)
  • Depression and concussion programme datasets

Datasets are described using a customised DATS (Data Tags Suite) metadata model and are accessible via DataLad through the CONP portal.

Privacy and Governance

  • Privacy-by-Design architecture
  • PPRL (Privacy-Preserving Record Linkage) using El Gamal homomorphic encryption for linking with health administrative data
  • Data Access Committee governs external data requests
  • Informatics Steering Committee oversees platform direction
  • Brain-CODE Governance Policy publicly available

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