Pseudonymization and identity management

If personal data are used for research purposes, they must be pseudonymized. It is also necessary to recognize and combine multiple registrations of the same patient; this requires error-tolerant matching of the identifying data (record linkage). Reidentification of records is also desired under controlled conditions.

In addition to the methodological work in this area, software has been developed at IMBEI that implements these functions under the term "patient list". This includes, for example, the PID generator published in 2005, which became known throughout Germany via the Technology and Methodology Platform for Networked Medical Research (TMF). Several research associations and medical registries use it. Then, in 2013, a technically modernized alternative for operating a patient list was made available in the form of the Mainzelliste.

Further information:

PID-Generator TMF
Die Mainzelliste 

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