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Data repository


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Browsing: Data repository


Katie Crist

Posts: 5
posted

Does anyone have recommendations on how to set up a data repository, where data could be be kept indefinitely and used for future, unplanned studies?

Camille Nebeker

Posts: 55
posted in reply to katie crist

Katie,

Can you provide some context as to what kind of data you are planning to store and whether it is data that would fall under HIPAA regs?

CN

Katie Crist

Posts: 5
posted

I believe most data would be considered RHI. However, in some studies we collect blood in order to screen participants on diabetes status, for example. This becomes part of their medical record and they sign a HIPAA form releasing only that information to us (not the entire medical record). This sample is only collected as part of the research study, not a separate healthcare event.
Question 1) – Is that still RHI?
Question 2) - Our guidelines here indicate that "RHI should be protected in the same manner as PHI". I'm unclear if that means taht it should be on HIPAA compliant servers.