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Overview
At the National Cancer Institute's (NCI) direction The Cancer Imaging Archive (TCIA) curates and publishes freely available cancer imaging datasets. These include clinical and pre-clinical radiology and pathology images as well as supporting clinical data (e.g. patient demographics and clinical outcomes), image annotations, and links to externally hosted genomic and proteomic datasets in other NCI databases where available. Data comes from NIH programs, clinical trials and community-submitted proposals to publish data.
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The Basic Application Confidentiality Profile requires that Patient Name and Patient ID are either blanked or modified. TCIA incorporates an ID mapping between the original Patient ID and the ID that the images will have within TCIA. The mapping table is created at the image submitting site, the mapping performed prior to the images leaving the site’s host computer, and TCIA never sees the original Patient ID. The remapped Patient ID is also mapped to the Patient Name field. This is done for the case where a DICOM viewer or application being used by the TCIA user that downloaded the data would require a Patient Name to be present. To show that the Patient Identity has been removed, the term “YES” is written into DICOM tag (0012,0062) “Patient Identity Removed”.
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A note about Patient ID as a DICOM identifier: An identifier for a particular individual may span more than one Collection, because it sometimes happens that an individual participates in more than one trial, or is analyzed by more than one downstream group. Therefore you might see "analysis result" series appear in a search from a different DOI than the original collection's. It is TCIA convention that all Series Instance UID are unique across the entire Archive, but that (a) a Patient ID will always point at one individual and (b) the combination of Collection+PatientID is uniquely identifying across the Archive ... this allows for research identifiers like "Case_01" being reused without different submitting sites knowing that this was already in use in the Archive. |
In general, the Basic Application Profile specifies removal or modification of any tag that by definition would contain PHI that could be used either alone or together with other information to uniquely identify a subject. Removal of detailed geographic information, dates, exam identifiers, patient demographics, free text entry fields, vendor private tags, etc. are all done to minimize the possibility of being able to uniquely identify an individual. The options to the DICOM de-identification standard allows for retention of information to help make the data scientifically valuable, but as more options are added the chance of PHI is increased and a rigorous de-identification process must be followed.
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