April 13 BEC Meeting BIRN Data Sharing Implementation From the BIRN DSTF Randy L. Gollub, Chair.

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Presentation transcript:

April 13 BEC Meeting BIRN Data Sharing Implementation From the BIRN DSTF Randy L. Gollub, Chair

BIRN Data*/Tools to be Shared *Prospectively collected: Currently ready to be shared: Human Phantom Data: raw and processed structural and functional MRI data, demographics, psychometrics, paradigm files Analysis tools: gradient unwarpping software, BIRN- De-identification and Upload tool (BIRN-DUP)

Current IRB/IACUC Status Acquired with explicit approval in the consent forms for sharing among BIRN sites and with scientific community

Preparations for Sharing  Remove all Individually Identifiable Health Information (IHI) including the 18 items specified under the HIPAA Safe Harbor Guidelines. This will include defacing the mMRI data (a nice advertisement for BIRN-DUP)  Complete Q/A, curation and annotation of the data (“archive set”) and analysis software (“release version”) so that it is useable to others). DSTF points out that this is effort intensive.

To access data/tools Complete on-line registration (could be done via the BIRN Portal) Name, address Agree to indemnify* BIRN and collaborating institutions Agree not to use for clinical work Agree to acknowledge BIRN for data and/or tools in all public uses (e.g. abstracts, manuscripts, grant proposals) Open issues (i.e. members of BEC have differing opinions so you sort this out, from rank and file the answers would be no): Should we ask permission for BIRN to make future contact to get feedback on utility of data, analysis tools? Should we wait for verification of or not? *see sample license text

Acknowledgement For each testbed and CC e.g. M-BIRN: Sample acknowledgement for a manuscript This research was supported by a grant (#U24 RR021382) to the Morphometry Biomedical Informatics Research Network (BIRN, that is funded by thehttp:// National Center for Research Resources at the National Institutes of Health, U.S.A.

Content of License Agreement  Sponsor is the institution(s) of origin of IP Non-clinical use only Indemnify institution No warranties No support  See text page for details  Modeled after 3 D Slicer