A robust governance structure has been developed to ensure that Brain-CODE maintains a high level of quality and security that is consistent with OBI’s vision and mandate. The following committees were formed to ensure the success of Brain-CODE:
Brain-CODE Informatics Steering Committee: provides insight on all issues relating to the establishment and management of Brain-CODE, ensuring that all progress is timely, of high quality and remains in line with the vision of OBI.
Brain-CODE Advisory Committee: advises on the direction and progress of Brain-CODE, ensuring the platform meets international best practices for data organization, sharing and analysis.
Brain-CODE Data Access Committee: develops data access and sharing policies and make recommendations to the Informatics Steering Committee regarding the release of data to third parties.
Brain-CODE Information Security Committee: recommends appropriate information security framework for the Brain-CODE platform, and work with the service group to implement and maintain privacy standards for all data and infrastructure in the platform.
Brain-CODE Analytics Advisory Committee: advises on the analytics direction of Brain-CODE, ensuring the platform meets international best practices on data curation and integrated data analysis for discovery and sharing.
The Ontario Brain Institute has worked with a team of experts to develop clear and comprehensive guidelines on privacy and the use of participant research data. Our governance documents outline how the data are collected, stored, and accessed by Brain-CODE users.
To ensure clarity for study participants, we have developed standard informed consent language outlining how sensitive data will be collected, entered, de-identified, and shared using Brain-CODE.
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