Institutional Review Board (IRB) terminology can often be confusing to new and seasoned researchers alike. Here is a brief refresher on the most commonly used terms.
Fully identifiable: Data or samples which include personal identifiers — information which would allow the person who provided the materials to be identified. If a study involves interaction with subjects the data or samples would be considered fully identifiable, at least when collected. Personal identifiers include, but are not limited to: name (this includes initials), social security number, medical record number, date of birth. Refer to the 18 HIPAA identifiers.
Coded: The personal identifiers will not be maintained with the rest of the data set or samples. Instead, letters, numbers, or symbols are assigned and there is a separate list (a “key” or “code break”) to allow the personal identifiers to be linked back to the data or samples.
Anonymized: Personal identifiers or a code once existed for the data or samples, but the identifiers have been or will be stripped from the data or samples or the “key” or “code break” has been destroyed.
Anonymous: No personal identifiers are included in the data set or with the samples so it is impossible to identify the person who provided the materials.
De-Identified: The HIPAA term for anonymized — the lack of or removal of all 18 HIPAA identifiers.
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