De-identified patient data

De-identified patient data is patient information that has had personally identifiable information (PII; e.g. a person’s name, email address, or social security number), including protected health information (PHI; e.g. medical history, test results, and insurance information) removed. This is normally performed when sharing the data from a registry or clinical study to prevent a participant from being directly or indirectly identified.

Sourced From
NIST National Technology Laboratory Computer Security Resource Center: Guide to Protecting the Confidentiality of Personally Identifiable Information (PII)
NIH: De-identifying Protected Health Information Under the Privacy Rule
Learn More
Rare Diseases Registry Program (RaDaR): Protect Human Research Participants

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