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Spinal cord injury (SCI) produces a complex syndrome characterized by loss of motor control and mobility; loss of bladder, bowel and sexual function; pathological pain; and loss of autonomy. The multifaceted nature of SCI presents a challenge for the SCI translational therapeutic pipeline. This problem of SCI complexity can be conceptualized as a big-data issue: the field needs a forum for large-scale data-indexing, data-sharing, and application of advanced analytics to catalyze SCI discoveries. To address this challenge our team has begun assembling a large multicenter, multispecies database of SCI research data spanning across a wide spectrum of SCI severities, treatments and outcomes. To fully harness the potential of SCI big-data we are building a digital infrastructure to democratize SCI data science, allowing outside researchers to access existing SCI big-data, contribute their own data, and enable access to user-friendly tools for big-data analytics for knowledge discovery within SCI research.

Our Policies have been forged by steering committee discussion and voting over the past 2 years.  At the current time our policies are as follows:

Policies of the ODC-SCI Staged BetaRelease (v.0.9) (1/5/2018)

   Definitions:

  • Laboratory:  Basic organizational unit for the ODC-SCI for data upload, private and semi-private data viewing.  Laboratories comprise groups of individuals under the director of a Principal Investigator.  Only laboratories and their members have access to the semi-private and private spaces.  

  • Data privacy levels:  

    • Private: May only be viewed by individual lab or lab members;  viewing rights controlled by data owners and PI’s

    • Semi-private:  May be viewed by all members of verified laboratories in ODC-SCI

    • Public:  Viewed by anyone visiting ODC-SCI under a CC-BY license

  • Verified laboratory:  A laboratory that has undergone review by the ODC-SCI Steering Committee according to the Principles of the ODC-SCI

  • Registered users:  All users who have registered for an account on ODC-SCI to make use of specialized services, e.g., saved searches.  Registering for an ODC-SCI account does NOT give you data upload privileges or admit you to the private and semi-private spaces;  all laboratory members are registered users but not all registered users are laboratory members

Setting up a laboratory:

1.  Anyone can create a laboratory, but only verified labs will be able view semi-private data

  • Everyone in a laboratory must have an ORCID
  • Verification: labs will undergo a manual review by the Steering Committee or other authorized individual.  Criteria include:
2.  Viewing semi private data:  Only those verified laboratories who have uploaded data will be able to view the semi-private data 

  • Descriptive metadata signifying that a data set exists:  will be viewable to all verified laboratories
  • Data themselves:  will be viewable upon release by laboratory

Data:

1.    Data licenses:  CC-BY for public data.(Reminder: CC-BY licensing allows reuse but requires original creditingauthors. Our polling at the FAIR-SCI Ahead workshop, suggested this should bethe default).

a.Owner will have to click to signify agreement; in the meantime, documentation in the form of email or other communication will be uploaded to the portal

b. At future time, we may give options for a range of minimally restrictivelicenses but not in the initial release


  1. Each data set will get a DOI:  it the data set is an aggregated data set made up of multiple individual data sets, each individual data set will get its own DOI
  1. Each data set will be accompanied by a full citation

 

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