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Data Sharing- NAMIC style

Data Sharing- NAMIC style. Randy Gollub, MD PhD http://na-mic.org. Our Motto. “If it doesn’t have IRB approval for sharing with the scientific community and it is not anonymized or de-identified, it doesn’t exist!”. 2 Flavors of Image Data.

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Data Sharing- NAMIC style

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  1. Data Sharing- NAMIC style Randy Gollub, MD PhD http://na-mic.org

  2. Our Motto • “If it doesn’t have IRB approval for sharing with the scientific community and it is not anonymized or de-identified, it doesn’t exist!”

  3. 2 Flavors of Image Data • Retrospective: collected prior to having plans to share it • What Core 3 folks are putting up now • Needs additional IRB approvals- that is the hold up • Prospective: collected with explicit plans for and approval to share it • What Core 3 folks have promised to collect from now on

  4. 3 Flavors of Image Data Handlers • Collectors (aka Core 3-sharers) • Transfer folks (aka Cores 2, 6, 7) • Users (aka Core 1, maybe Cores 5, 6 -sharees)

  5. Image Data Collectors • Responsibilities Collect the data with IRB approval for study and for sharing- details required vary by institution Remove all individually Identifiable Health Information (IHI) as specified by the HIPAA regulations. This may be a joint effort with the Transfer folks. • Rewards • Get their NAMIC funding- this is a requirement of the grant remember • Acknowledgement in any manuscripts in a manner or fashion to be agreed upon

  6. Image Data Transfer Folks • Responsibilities • Obtain IRB approval for the implementation of the sharing process (done, PI Kikinis, author Manandhar) • Assist with the removal of individually Identifiable Health Information (IHI) such as performing the skull stripping or defacing, and removal of fields in DICOM headers. • Track IRB approval and Human Research Training requirements met for anyone who the data is to be shared with- inside or out of NAMIC (?). • Rewards • Makes NAMIC work, so is inherently satisfying • Get paid, this is their job.

  7. Image Data Users • Responsibilities • Obtain Human Subjects Training credentials for everyone (including students and research assistants) who will have access to the data and give to NAMIC administrators • Do not attempt to identify the human associated with an imaging data set • Acknowledge the image data source (see Collectors) • Rewards • Use of the data to test or validate their tools/algorithms • Write manuscripts

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