Abstract
The Ontario Brain Institute (OBI) has begun to catalyze scientific discovery in the field of neuroscience through its large-scale informatics platform, known as Brain-CODE. The platform supports the capture, storage, federation, sharing, and analysis of different data types across several brain disorders. Underlying the platform is a robust and scalable data governance structure which allows for the flexibility to advance scientific understanding, while protecting the privacy of research participants. Recognizing the value of an open science approach to enabling discovery, the governance structure was designed not only to support collaborative research programs, but also to support open science by making all data open and accessible in the future. OBI’s rigorous approach to data sharing maintains the accessibility of research data for big discoveries without compromising privacy and security. Taking a Privacy by Design approach to both data sharing and development of the platform has allowed OBI to establish some best practices related to large-scale data sharing within Canada. The aim of this report is to highlight these best practices and develop a key open resource which may be referenced during the development of similar open science initiatives.
Highlights
Data sharing and collaborative research has been widely recognized as a catalyst for scientific discovery (National Institutes of Health, 2003; Wellcome Trust (2010); Canadian Institutes of Health Research, 2013)
There are over 17,000 study participants in BrainCODE, across Ontario Brain Institute (OBI)’s five supported brain disorder areas: neurodevelopmental disorders,4 cerebral palsy,5 epilepsy,6 mood disorders,7 and neurodegenerative disorders
Of data sharing, the OBI Informatics Governance Policy has set a high standard for the governance of data sharing in the neuroscience field
Summary
Data sharing and collaborative research has been widely recognized as a catalyst for scientific discovery (National Institutes of Health, 2003; Wellcome Trust (2010); Canadian Institutes of Health Research, 2013). KEY CONCEPT 4 | Study description schedule Schedule of the Participation Agreement that includes information specific to each individual research project that will utilize Brain-CODE This includes details such as study protocol, REB approval, consent forms, description of datasets to be transferred, institutional conditions, and a list of investigators directly involved as collaborators in the study who will have access to the data in an identifiable form. In an effort to harmonize and streamline the process, OBI has created standardized informed consent language that is used across all research projects that plan to use Brain-CODE.3 This language was developed in collaboration with research ethics board chairs from the network of participating institutions and the Information and Privacy Commissioner of Ontario in 2015. KEY CONCEPT 7 | Ethics restrictions reports An output from the Ethics Tracking Database produced for each study to provide an overview of dataset permissions
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