title: Matching study to registry data: maintaining data privacy in a study on family based colorectal cancer.
abstract: Confidentiality of patient data in the field of medical informatics is an important task. Leaked sensitive information within this data can be adverse to and being abused against a patient. Therefore, when working with medical data, appropriate and secure models which serve as guidelines for different applications are needed. Consequently, this work presents a model for performing a privacy preserving record linkage between study and registry data. The model takes into account seven requirements related to data privacy. Furthermore, this model is exemplified with a study on family based colorectal cancer in Germany. The model is very strict and excludes possible violations towards data privacy protection to a reasonable degree. It should be applicable to similar use cases which are in need of a mapping between medical data of a study and a registry database.
authors.affiliation: IBE, Ludwig-Maximilians-Universität München, Germany.
authors.forename: Daniel
authors.initials: D
authors.lastname: Nasseh
authors.affiliation: IBE, Ludwig-Maximilians-Universität München, Germany.
authors.forename: Jutta
authors.initials: J
authors.lastname: Engel
authors.affiliation: IBE, Ludwig-Maximilians-Universität München, Germany.
authors.forename: Ulrich
authors.initials: U
authors.lastname: Mansmann
authors.affiliation: Munich Cancer Registry, Germany.
authors.forename: Werner
authors.initials: W
authors.lastname: Tretter
authors.affiliation: IBE, Ludwig-Maximilians-Universität München, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Stausberg
mesh_terms: D015179:Colorectal Neoplasms / Q000235:genetics*; D016494:Computer Security / Q000592:standards; D003219:Confidentiality / Q000592:standards; D057286:Electronic Health Records / Q000592:standards*; D020022:Genetic Predisposition to Disease / Q000235:genetics; D005858:Germany; D006801:Humans; D016247:Information Storage and Retrieval / Q000592:standards*; D008498:Medical Record Linkage / Q000592:standards*; D010375:Pedigree; D017410:Practice Guidelines as Topic; D012042:Registries / Q000592:standards*