I'm trying to download data from the single nucleus RNA-seq of Alzheimers disease paper (syn18485175). In order for my institution to sign the data use agreement, they need to have an MTA in place as well as a security protocol in place for the data.
We have determined that IRB oversight is unnecessary for these data, but because some parts of the data can be re-identified, HIPAA regulations are in effect.
To determine the proper regulations to follow, I need to know which parts of the data set are re-identifiable.
Is the entire data set re-identifiable, or is it considered a "limited data set" under HIPAA regulations (https://privacyruleandresearch.nih.gov/pr_08.asp)? Which parts of the data set will I be able to re-identify once I have access to the data?
Thanks,
Blake
Created by blakechancellor Hi @blakechancellor. We do not provide an MTA as part of the data access process. What is required is adherence to the terms as described in the DUC. The data is considered PHI due to the nature of the assay, ie the potential to derive identity from the sequencing. The clinical data available on this cohort has been HIPAA de-identified, but should still be protected in the same manner as the sequencing data.
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