Can NDAR compile all information about a single research participant, even if it was submitted by different researchers and at different times?
Yes. Although data submitted to the NIH NDAR Data Repository are de-identified such that the identities of research participants cannot be readily ascertained or otherwise associated with the data by the repository staff or secondary users, research participants should be made aware during the informed consent process that other researchers will have access to their coded research data in NDAR, and what, if any, privacy risks exist. In fact, investigators approved to submit data to NDAR and their institutional officials certify that an IRB and/or Privacy Board have considered the risks to privacy prior to submitting the data. In addition, investigators granted access to NDAR data and their institutions sign a Data Use Certification (DUC), contained in the NDAR Data Access Request, agreeing not to make any attempt to re-identify individual participants, to use the data only for approved purposes, and to protect data confidentiality, among other stipulations.
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