Abstract
Historically, research databases have existed in isolation with no practical avenue for sharing or pooling medical data into high dimensional datasets that can be efficiently compared across databases. To address this challenge, the Ontario Brain Institute’s “Brain-CODE” is a large-scale neuroinformatics platform designed to support the collection, storage, federation, sharing and analysis of different data types across several brain disorders, as a means to understand common underlying causes of brain dysfunction and develop novel approaches to treatment. By providing researchers access to aggregated datasets that they otherwise could not obtain independently, Brain-CODE incentivizes data sharing and collaboration and facilitates analyses both within and across disorders and across a wide array of data types, including clinical, neuroimaging and molecular. The Brain-CODE system architecture provides the technical capabilities to support (1) consolidated data management to securely capture, monitor and curate data, (2) privacy and security best-practices, and (3) interoperable and extensible systems that support harmonization, integration, and query across diverse data modalities and linkages to external data sources. Brain-CODE currently supports collaborative research networks focused on various brain conditions, including neurodevelopmental disorders, cerebral palsy, neurodegenerative diseases, epilepsy and mood disorders. These programs are generating large volumes of data that are integrated within Brain-CODE to support scientific inquiry and analytics across multiple brain disorders and modalities. By providing access to very large datasets on patients with different brain disorders and enabling linkages to provincial, national and international databases, Brain-CODE will help to generate new hypotheses about the biological bases of brain disorders, and ultimately promote new discoveries to improve patient care.
Highlights
The principles of data sharing as a catalyst for scientific discovery are widely recognized by international organizations such as the National Institutes of Health (2003), Wellcome Trust (2010) and Canadian Institutes of Health Research (2013)
Data access requests are reviewed by Brain-CODE’s Data Access Committee (DAC) which is composed of researchers, neuroinformatics experts, and Ontario Brain Institute (OBI) staff
As with most data repositories, naming conventions standards are key. Do these features enable a given subject’s data to be linked across the corresponding data stored on separate data capture systems, but such standardization ensures that automated quality assurance (QA) and quality control (QC) pipelines can be successfully applied to the data
Summary
The principles of data sharing as a catalyst for scientific discovery are widely recognized by international organizations such as the National Institutes of Health (2003), Wellcome Trust (2010) and Canadian Institutes of Health Research (2013). Establishing standard software would address these issues; available platforms each have their unique advantages and there is a significant cost for researchers in time and effort to move to new platforms This complex set of data integration needs cannot be addressed using inflexible systems working in isolation nor by the development of a “one size fits all” platform. Federation and linking with other databases involves the implementation of high-security data transfer infrastructure These include encryption and de-identification tools to protect participant data and enhanced validation certificates to guarantee authenticity of outward-facing software applications, as well as administrative, physical and technical safeguards and security processes that are aligned with Code of Federal Regulations Title 21, Part 11 standards (CFR Title 21, Part 11, 2017). To maximize the data sharing and analytics capacity of Brain-CODE, while enabling the secure collection of PHI, processes were developed to permit functional separation of sensitive data while being complemented by granular access controls to ensure that data are only available to Brain-CODE users who are authorized to access it (Figure 2)
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