The Arkansas Clinical Data Repository managed by TRI is a valuable resource, allowing you relatively straightforward access to vast stores of patient data. We encourage researchers across campus to use this resource whenever possible for their studies. (Hint: Patient data can often be provided without identifiers, which could mean your study is not subject to IRB oversight!)
Please note that the IRB office also reviews data repository requests before those datasets are released to investigators. One thing we look for is whether the request is consistent with any related IRB submission. For example, we’ve seen cases where we’ve determined that something is not human subject research because it contains no identifiable private information, and then we see the investigator has requested a dataset that includes identifiers. We can’t authorize the release of those data until the discrepancy is addressed, by either removing the identifiers from the dataset, or having the investigator submit a new submission form we can review and approve that accurately describes the data.
And if your study has already been IRB-approved, HIPAA constraints require us to determine that what you’re asking for data-wise matches what your submission says you’ll be asking for, and that it’s the minimum necessary for your project. Paying close attention to these details will help you get your data in hand faster.