FAIR in action: Brain-CODE-A neuroscience data sharing platform to accelerate brain research

被引:4
作者
Behan, Brendan [1 ]
Jeanson, Francis [2 ]
Cheema, Heena [1 ]
Eng, Derek [1 ]
Khimji, Fatema [1 ]
Vaccarino, Anthony L. [3 ]
Gee, Tom [3 ]
Evans, Susan G. [3 ]
MacPhee, F. Chris [3 ]
Dong, Fan [3 ]
Shahnazari, Shahab [3 ]
Sparks, Alana [3 ]
Martens, Emily [3 ]
Lasalandra, Bianca [3 ]
Arnott, Stephen R. [4 ]
Strother, Stephen C. [4 ]
Javadi, Mojib [3 ]
Dharsee, Moyez [3 ]
Evans, Kenneth R. [3 ]
Nylen, Kirk [1 ,5 ]
Mikkelsen, Tom [1 ]
机构
[1] Ontario Brain Inst, Toronto, ON, Canada
[2] Datadex, Toronto, ON, Canada
[3] Indoc Res, Toronto, ON, Canada
[4] Rotman Res Inst, Toronto, ON, Canada
[5] Univ Toronto, Dept Pharmacol & Toxicol, Toronto, ON, Canada
关键词
neuroinformatics; neuroscience; data sharing; data management; FAIR;
D O I
10.3389/fninf.2023.1158378
中图分类号
Q [生物科学];
学科分类号
07 ; 0710 ; 09 ;
摘要
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-Brain-CODE offers an interactive and itemized approach for requesters to generate data cuts of interest that align with their research questions. Accessible-Brain-CODE offers multiple data access mechanisms. These mechanisms-that distinguish between metadata access, data access within a secure computing environment on Brain-CODE and data access via export will be discussed. Interoperable-Standardization 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.
引用
收藏
页数:7
相关论文
共 24 条
  • [1] The Data Tags Suite (DATS) model for discovering data access and use requirements
    Alter, George
    Gonzalez-Beltran, Alejandra
    Ohno-Machado, Lucila
    Rocca-Serra, Philippe
    [J]. GIGASCIENCE, 2020, 9 (02):
  • [2] [Anonymous], 2004, Personal Health Information Protection Act
  • [3] Behan B., 2020, INT J POPUL DATA SCI, V5, DOI [10.23889/ijpds.v5i5.1630, DOI 10.23889/IJPDS.V5I5.1630]
  • [4] The Ontario Neurodegenerative Disease Research Initiative (ONDRI)
    Farhan, Sali M. K.
    Bartha, Robert
    Black, Sandra E.
    Corbett, Dale
    Finger, Elizabeth
    Freedman, Morris
    Greenberg, Barry
    Grimes, David A.
    Hegele, Robert A.
    Hudson, Chris
    Kleinstiver, Peter W.
    Lang, Anthony E.
    Masellis, Mario
    McIlroy, William E.
    McLaughlin, Paula M.
    Montero-Odasso, Manuel
    Munoz, David G.
    Munoz, Douglas P.
    Strother, Stephen
    Swartz, Richard H.
    Symons, Sean
    Tartaglia, Maria Carmela
    Zinman, Lorne
    Strong, Michael J.
    [J]. CANADIAN JOURNAL OF NEUROLOGICAL SCIENCES, 2017, 44 (02) : 196 - 202
  • [5] Gee T., 2018, INT J POPUL DATA SCI, V3, DOI [10.23889/ijpds.v3i4.831, DOI 10.23889/IJPDS.V3I4.831]
  • [6] The brain imaging data structure, a format for organizing and describing outputs of neuroimaging experiments
    Gorgolewski, Krzysztof J.
    Auer, Tibor
    Calhoun, Vince D.
    Craddock, R. Cameron
    Das, Samir
    Duff, Eugene P.
    Flandin, Guillaume
    Ghosh, Satrajit S.
    Glatard, Tristan
    Halchenko, Yaroslav O.
    Handwerker, Daniel A.
    Hanke, Michael
    Keator, David
    Li, Xiangrui
    Michael, Zachary
    Maumet, Camille
    Nichols, B. Nolan
    Nichols, Thomas E.
    Pellman, John
    Poline, Jean-Baptiste
    Rokem, Ariel
    Schaefer, Gunnar
    Sochat, Vanessa
    Triplett, William
    Tumer, Jessica A.
    Varoquaux, Gael
    Poldrack, Russell A.
    [J]. SCIENTIFIC DATA, 2016, 3
  • [7] Government of Canada,, 2021, TRI AG RES DAT MAN P
  • [8] Harding R. J, 2022, PREPRINT, DOI [10.31219/osf.io/eh349, DOI 10.31219/OSF.IO/EH349]
  • [9] Health Information Portability and Accountability Act [HIPAA], 1996, GUIDANCE REGARDING M
  • [10] Discovering biomarkers for antidepressant response: protocol from the Canadian biomarker integration network in depression (CAN-BIND) and clinical characteristics of the first patient cohort
    Lam, Raymond W.
    Milev, Roumen
    Rotzinger, Susan
    Andreazza, Ana C.
    Blier, Pierre
    Brenner, Colleen
    Daskalakis, Zafiris J.
    Dharsee, Moyez
    Downar, Jonathan
    Evans, Kenneth R.
    Farzan, Faranak
    Foster, Jane A.
    Frey, Benicio N.
    Geraci, Joseph
    Giacobbe, Peter
    Feilotter, Harriet E.
    Hall, Geoffrey B.
    Harkness, Kate L.
    Hassel, Stefanie
    Ismail, Zahinoor
    Leri, Francesco
    Liotti, Mario
    MacQueen, Glenda M.
    McAndrews, Mary Pat
    Minuzzi, Luciano
    Mueller, Daniel J.
    Parikh, Sagar V.
    Placenza, Franca M.
    Quilty, Lena C.
    Ravindran, Arun V.
    Salomons, Tim V.
    Soares, Claudio N.
    Strother, Stephen C.
    Turecki, Gustavo
    Vaccarino, Anthony L.
    Vila-Rodriguez, Fidel
    Kennedy, Sidney H.
    [J]. BMC PSYCHIATRY, 2016, 16