Promoting FAIR Data Through Community-driven Agile Design: the Open Data Commons for Spinal Cord Injury (

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4 Scopus citations


The past decade has seen accelerating movement from data protectionism in publishing toward open data sharing to improve reproducibility and translation of biomedical research. Developing data sharing infrastructures to meet these new demands remains a challenge. One model for data sharing involves simply attaching data, irrespective of its type, to publisher websites or general use repositories. However, some argue this creates a ‘data dump’ that does not promote the goals of making data Findable, Accessible, Interoperable and Reusable (FAIR). Specialized data sharing communities offer an alternative model where data are curated by domain experts to make it both open and FAIR. We report on our experiences developing one such data-sharing ecosystem focusing on ‘long-tail’ preclinical data, the Open Data Commons for Spinal Cord Injury ( ODC-SCI was developed with community-based agile design requirements directly pulled from a series of workshops with multiple stakeholders (researchers, consumers, non-profit funders, governmental agencies, journals, and industry members). ODC-SCI focuses on heterogeneous tabular data collected by preclinical researchers including bio-behaviour, histopathology findings and molecular endpoints. This has led to an example of a specialized neurocommons that is well-embraced by the community it aims to serve. In the present paper, we provide a review of the community-based design template and describe the adoption by the community including a high-level review of current data assets, publicly released datasets, and web analytics. Although is in its late beta stage of development, it represents a successful example of a specialized data commons that may serve as a model for other fields.

Original languageEnglish
Pages (from-to)203-219
Number of pages17
Issue number1
StatePublished - Jan 2022

Bibliographical note

Funding Information:
Supported by: National Institutes of Health (NS088475, NS106899 to A.R.F.), the US Department of Veterans Affairs (I01RX002245, I01RX002787 to A.R.F.), Wings for Life (to A.R.F.) and the Craig H. Neilsen Foundation (to A.R.F.). The STREET-FAIR workshop was supported by a workshop grant from the International Neuroinformatics Coordinating Facility (INCF)(to A.R.F.). development is supported by a multi-funder grant (Wings for Life, Craig H. Neilsen Foundation, in-kind support from International Spinal Research Trust)(to K.F.)

Funding Information:
J.-B.P. was partially funded by National Institutes of Health (NIH) NIH-NIBIB P41 EB019936 (ReproNim) NIH-NIMH R01 MH083320 and NIH RF1 MH120021 (NIDM), NIMH Award Number R01MH096906 (Neurosynth), as well as the Canada First Research Excellence Fund, awarded to McGill University for the Healthy Brains for Healthy Lives initiative.

Publisher Copyright:
© 2021, The Author(s).


  • Data sharing
  • FAIR
  • community repository
  • data reuse
  • neurotrauma
  • spinal cord injury

ASJC Scopus subject areas

  • Software
  • Neuroscience (all)
  • Information Systems


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