title: Piloting the European Unified Patient Identity Management (EUPID) Concept to Facilitate Secondary Use of Neuroblastoma Data from Clinical Trials and Biobanking.
abstract: Data from two contexts, i.e. the European Unresectable Neuroblastoma (EUNB) clinical trial and results from comparative genomic hybridisation (CGH) analyses from corresponding tumour samples shall be provided to existing repositories for secondary use. Utilizing the European Unified Patient IDentity Management (EUPID) as developed in the course of the ENCCA project, the following processes were applied to the data: standardization (providing interoperability), pseudonymization (generating distinct but linkable pseudonyms for both contexts), and linking both data sources. The applied procedures resulted in a joined dataset that did not contain any identifiers that would allow to backtrack the records to either data sources. This provided a high degree of privacy to the involved patients as required by data protection regulations, without preventing proper analysis.
authors.affiliation: AIT Austrian Institute of Technology. Digital Safety & Security Dept., Graz, Austria.
authors.forename: Hubert
authors.initials: H
authors.lastname: Ebner
authors.affiliation: AIT Austrian Institute of Technology. Digital Safety & Security Dept., Graz, Austria.
authors.forename: Dieter
authors.initials: D
authors.lastname: Hayn
authors.affiliation: AIT Austrian Institute of Technology. Digital Safety & Security Dept., Graz, Austria.
authors.forename: Markus
authors.initials: M
authors.lastname: Falgenhauer
authors.affiliation: AIT Austrian Institute of Technology. Digital Safety & Security Dept., Graz, Austria.
authors.forename: Michael
authors.initials: M
authors.lastname: Nitzlnader
authors.affiliation: Institut Curie, Paris, France.
authors.forename: Gudrun
authors.initials: G
authors.lastname: Schleiermacher
authors.affiliation: Istituto G. Gaslini, Genova, Italy.
authors.forename: Riccardo
authors.initials: R
authors.lastname: Haupt
authors.affiliation: Istituto G. Gaslini, Genova, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Erminio
authors.affiliation: Istituto G. Gaslini, Genova, Italy.
authors.forename: Raffaella
authors.initials: R
authors.lastname: Defferrari
authors.affiliation: Istituto G. Gaslini, Genova, Italy.
authors.forename: Katia
authors.initials: K
authors.lastname: Mazzocco
authors.affiliation: Southampton General Hospital, Southampton, UK.
authors.forename: Jan
authors.initials: J
authors.lastname: Kohler
authors.affiliation: University of Padua, Padova, Italy.
authors.forename: Gian Paolo
authors.initials: GP
authors.lastname: Tonini
authors.affiliation: Children's Cancer Research Institute, Vienna, Austria.
authors.forename: Ruth
authors.initials: R
authors.lastname: Ladenstein
authors.affiliation: AIT Austrian Institute of Technology. Digital Safety & Security Dept., Graz, Austria.
authors.forename: Guenter
authors.initials: G
authors.lastname: Schreier
mesh_terms: D018070:Biological Specimen Banks / Q000458:organization & administration; D002648:Child; D002986:Clinical Trials as Topic; D016494:Computer Security; D005060:Europe; D006801:Humans; D033181:Information Dissemination; D009447:Neuroblastoma / Q000235:genetics / Q000473:pathology*; D010355:Patient Identification Systems / Q000379:methods*; D018907:Privacy; D012042:Registries