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Submissions :: Protocol review process :: Expedited/Exempt Review :: Exemption :: Archival Data :: Private data sets

Private Data Sets

Private data sets may include (but are not limited to): data collected previously by another researcher for another study, data collected by another agency for evaluative or research purposes, or your own data that you collected for a previous study. Private data sets generally require permission to access the data, and the Board will need to know that you will obtain (or have already obtained) proper permission to access the data.  Except in the case where you already own the rights to the data, if you have access to the data as part of your profession but do not “own” the data, you will need to obtain permission to use it for your research. For example, if you are a principal at school and have access to student records as part of your job, you cannot access student records for research purposes without the proper permission first.  

When are the data exempt?

The federal regulations state that “if the information is recorded by the investigator in such a manner that subjects cannot be identified, directly or through identifiers linked to the subjects”, the data are considered exempt.  The key to qualifying for exemption is demonstrating to the Board that you are receiving the data stripped of identifiers.  The Board will need to know who stripped the data for you (it should be a third party who has regular access to the data).  They will need to know what data fields you will use (make sure that the data fields do not include identifiers).  In the case where you are using data you collected from a previous study, if you have already linked and stripped the data, it should be exempt if used in future studies.  If the participants consented in the original consent form that they will allow their data to be used in future studies, you will not be required to consent the participants again, but the data may not be considered exempt if you will continue to use identifiable information.  If you did not obtain consent to use the participants’ data in future studies and the data are identifiable, the Board may ask that you contact the participants again and obtain consent to use their data in the new study.

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