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Degree of Data Sharing

Degree of Data Sharing

Will the data be shared with others/made public?

Best Practices:

  • Before you set up your data acquisition pipelines, determine if templates or protocols that match your goals already exist in the intended database (e.g., NDA) that you can use to facilitate data harmonization.
  • Ensure that you use a consent form broad enough to allow the intended data sharing and use for research questions other than those driving the initial data acquisition.

Things to Avoid:

  • Avoid reinventing the wheel and having to engage in time-intensive post-hoc harmonization if it can be avoided.
  • Avoid methods that require you to remove PHI post hoc before data sharing.
  • Avoid using a consent form that limits data sharing and reuse for novel research questions.

Value Set Definitions: 

  • Public: open license
  • Controlled access: Shared with public but account or permission required
  • No sharing: accessible only to researcher

Value of Use Case Example:

Controlled access - Jordan plans to submit to the NIMH Data Archive.

Discussion of Use Case:

Currently the use of cloud computing resources neither facilitates or impedes the sharing of data with the NIMH Data Archive. However, it will facilitate submission to the NIMH Data Archive if Jordan ensures that any formats or processing streams used are optimally compatible with what will be required by the NIMH Data Archive. Jordan should consult with the NIMH Data Archive to determine whether they are implementing any particular transfer pathways that have any particular requirements.

See Also:

  • NIMH Data Archive (NDA): Cloud-based repository that makes available human subjects data collected from hundreds of research projects across many scientific domains. NDA provides infrastructure for sharing research data, tools, methods, and analyses enabling collaborative science. A useful cost calculator can be found here: https://nda.nih.gov/contribute_cost_estimation.html
  • Human Connectome Project
  • NiPype: a Python project that provides a uniform interface to existing neuroimaging software and facilitates interaction between these packages within a single workflow. 
  • Open Neuro: Open data repository for sharing MRI, MEG, EEG, iEEG, and ECoG data