{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,16]],"date-time":"2026-01-16T19:03:02Z","timestamp":1768590182472,"version":"3.49.0"},"reference-count":24,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2023,5,18]],"date-time":"2023-05-18T00:00:00Z","timestamp":1684368000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100008914","name":"Ontario Brain Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008914","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neuroinform."],"abstract":"<jats:p>The effective sharing of health research data within the healthcare ecosystem can have tremendous impact on the advancement of disease understanding, prevention, treatment, and monitoring. By combining and reusing health research data, increasingly rich insights can be made about patients and populations that feed back into the health system resulting in more effective best practices and better patient outcomes. To achieve the promise of a learning health system, data needs to meet the FAIR principles of findability, accessibility, interoperability, and reusability. Since the inception of the Brain-CODE platform and services in 2012, the Ontario Brain Institute (OBI) has pioneered data sharing activities aligned with FAIR principles in neuroscience. Here, we describe how Brain-CODE has operationalized data sharing according to the FAIR principles. Findable\u2014Brain-CODE offers an interactive and itemized approach for requesters to generate data cuts of interest that align with their research questions. Accessible\u2014Brain-CODE offers multiple data access mechanisms. These mechanisms\u2014that distinguish between metadata access, data access within a secure computing environment on Brain-CODE and data access via export will be discussed. Interoperable\u2014Standardization happens at the data capture level and the data release stage to allow integration with similar data elements. Reusable - Brain-CODE implements several quality assurances measures and controls to maximize data value for reusability. We will highlight the successes and challenges of a FAIR-focused neuroinformatics platform that facilitates the widespread collection and sharing of neuroscience research data for learning health systems.<\/jats:p>","DOI":"10.3389\/fninf.2023.1158378","type":"journal-article","created":{"date-parts":[[2023,5,18]],"date-time":"2023-05-18T08:00:50Z","timestamp":1684396850000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":9,"title":["FAIR in action: Brain-CODE - A neuroscience data sharing platform to accelerate brain research"],"prefix":"10.3389","volume":"17","author":[{"given":"Brendan","family":"Behan","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francis","family":"Jeanson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heena","family":"Cheema","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Derek","family":"Eng","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fatema","family":"Khimji","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anthony L.","family":"Vaccarino","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tom","family":"Gee","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan G.","family":"Evans","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"F. Chris","family":"MacPhee","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fan","family":"Dong","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shahab","family":"Shahnazari","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alana","family":"Sparks","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emily","family":"Martens","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bianca","family":"Lasalandra","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephen R.","family":"Arnott","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephen C.","family":"Strother","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mojib","family":"Javadi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Moyez","family":"Dharsee","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kenneth R.","family":"Evans","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirk","family":"Nylen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tom","family":"Mikkelsen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2023,5,18]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","DOI":"10.1093\/gigascience\/giz165","article-title":"The data tags suite (DATS) model for discovering data access and use requirements.","volume":"9","author":"Alter","year":"2020","journal-title":"GigaScience"},{"key":"B2","doi-asserted-by":"publisher","DOI":"10.23889\/ijpds.v5i5.1630","article-title":"Using A privacy preserving record linkage to facilitate an ongoing crosswalk between research and health administrative databases.","volume":"5","author":"Behan","year":"2020","journal-title":"Int. J. Popul. Data Sci."},{"key":"B3","doi-asserted-by":"publisher","first-page":"196","DOI":"10.1017\/cjn.2016.415","article-title":"The Ontario neurodegenerative disease research initiative (ONDRI).","volume":"44","author":"Farhan","year":"2017","journal-title":"Can. J. Neurol. Sci."},{"key":"B4","doi-asserted-by":"publisher","DOI":"10.23889\/ijpds.v3i4.831","article-title":"Designing and Implementing a privacy preserving record linkage protocol.","volume":"3","author":"Gee","year":"2018","journal-title":"Int. J. Popul. Data Sci."},{"key":"B5","doi-asserted-by":"publisher","DOI":"10.1038\/sdata.2016.44","article-title":"The brain imaging data structure, a format for organizing and describing outputs of neuroimaging experiments.","volume":"3","author":"Gorgolewski","year":"2016","journal-title":"Sci. Data"},{"key":"B6","year":"2021","journal-title":"Tri-Agency Research Data Management Policy."},{"key":"B7","doi-asserted-by":"publisher","DOI":"10.31219\/osf.io\/eh349","article-title":"The canadian open neuroscience platform \u2013 an open science framework for the neuroscience community","author":"Harding","year":"2022"},{"key":"B8","article-title":"Guidance Regarding Methods for De-Identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.","year":"1996"},{"key":"B9","doi-asserted-by":"publisher","DOI":"10.1186\/s12888-016-0785-x","article-title":"Discovering biomarkers for antidepressant response: protocol from the Canadian biomarker integration network in depression (CAN-BIND) and clinical characteristics of the first patient cohort.","volume":"16","author":"Lam","year":"2016","journal-title":"BMC Psychiatry"},{"key":"B10","doi-asserted-by":"publisher","DOI":"10.1016\/j.xgen.2021.100028","article-title":"The data use ontology to streamline responsible access to human biomedical datasets.","volume":"1","author":"Lawson","year":"2021","journal-title":"Cell Genomics"},{"key":"B11","doi-asserted-by":"publisher","DOI":"10.3389\/fgene.2019.00191","article-title":"Big data needs big governance: best practices from brain-CODE, the Ontario-brain institute\u2019s neuroinformatics platform.","volume":"10","author":"Lefaivre","year":"2019","journal-title":"Front. Genet."},{"key":"B12","year":"2023","journal-title":"NIH Data Management &amp; Sharing Policy."},{"key":"B13","year":"2004","journal-title":"S.O. 2004, c. 3, Sched. A."},{"key":"B14","doi-asserted-by":"publisher","DOI":"10.1038\/s41597-023-01946-1","article-title":"Data and tools integration in the canadian open neuroscience platform.","volume":"10","author":"Poline","year":"2023","journal-title":"Sci. Data"},{"key":"B15","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1007\/s12021-021-09557-0","article-title":"Is neuroscience FAIR? A call for collaborative standardisation of neuroscience data.","volume":"20","author":"Poline","year":"2022","journal-title":"Neuroinformatics"},{"key":"B16","doi-asserted-by":"publisher","DOI":"10.23889\/ijpds.v7i4.1755","article-title":"Validating a novel deterministic privacy-preserving record linkage between administrative & clinical data: applications in stroke research.","volume":"7","author":"Southwell","year":"2022","journal-title":"Int. J. Popul. Data Sci."},{"key":"B17","doi-asserted-by":"publisher","first-page":"683","DOI":"10.1017\/cjn.2014.36","article-title":"The Ontario Brain Institute: completing the circle.","volume":"41","author":"Stuss","year":"2014","journal-title":"Can. J. Neurol. Sci."},{"key":"B18","doi-asserted-by":"publisher","first-page":"226","DOI":"10.1002\/alz.12632","article-title":"Characteristics of the Ontario neurodegenerative disease research initiative cohort.","volume":"19","author":"Sunderland","year":"2023","journal-title":"Alzheimer\u2019s Dement."},{"key":"B19","doi-asserted-by":"publisher","first-page":"375","DOI":"10.1089\/gtmb.2014.1555","article-title":"The global alliance for genomics & health.","volume":"18","author":"Terry","year":"2014","journal-title":"Genet. Test. Mol. Biomark."},{"key":"B20","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2021.617997","article-title":"Multisite comparison of MRI defacing software across multiple cohorts.","volume":"12","author":"Theyers","year":"2021","journal-title":"Front. Psychiatry"},{"key":"B21","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2022.816465","article-title":"Common data elements to facilitate sharing and re-use of participant-level data: assessment of psychiatric comorbidity across brain disorders.","volume":"13","author":"Vaccarino","year":"2022","journal-title":"Front. Psychiatry"},{"key":"B22","doi-asserted-by":"publisher","DOI":"10.3389\/fninf.2018.00028","article-title":"Brain-CODE: a secure neuroinformatics platform for management, federation, sharing and analysis of multi-dimensional neuroscience data.","volume":"12","author":"Vaccarino","year":"2018","journal-title":"Front. Neuroinformat."},{"key":"B23","year":"2017","journal-title":"Software and Materials Management and Sharing Policy."},{"key":"B24","doi-asserted-by":"publisher","DOI":"10.1038\/sdata.2016.18","article-title":"The fair guiding principles for scientific data management and stewardship.","volume":"3","author":"Wilkinson","year":"2016","journal-title":"Sci. Data"}],"container-title":["Frontiers in Neuroinformatics"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fninf.2023.1158378\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,5,18]],"date-time":"2023-05-18T08:00:52Z","timestamp":1684396852000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fninf.2023.1158378\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5,18]]},"references-count":24,"alternative-id":["10.3389\/fninf.2023.1158378"],"URL":"https:\/\/doi.org\/10.3389\/fninf.2023.1158378","relation":{},"ISSN":["1662-5196"],"issn-type":[{"value":"1662-5196","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,5,18]]},"article-number":"1158378"}}