De-identified patient data« Back to Glossary Index
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.
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
Rare Diseases Registry Program (RaDaR): Protect Human Research Participants