Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking

Hubert Ebner, Dieter Hayn, Markus Falgenhauer, Michael Nitzlnader, Gudrun Schleiermacher, Riccardo Haupt, Giovanni Erminio, Raffaella Defferrari, Katia Mazzocco, Jan Kohler, Gian Paolo Tonini, Ruth Ladenstein, Guenter Schreier

Research output: Chapter in Book/Report/Conference proceedingConference contribution

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.

Original languageEnglish
Title of host publicationHealth Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference
PublisherIOS Press
Pages31-38
Number of pages8
Volume223
ISBN (Electronic)9781614996446
DOIs
Publication statusPublished - 2016
Event2016 10th Annual Conference on Health Informatics Meets eHealth, eHealth 2016 - Vienna, Austria
Duration: May 24 2016May 25 2016

Publication series

NameStudies in Health Technology and Informatics
Volume223
ISSN (Print)09269630
ISSN (Electronic)18798365

Other

Other2016 10th Annual Conference on Health Informatics Meets eHealth, eHealth 2016
CountryAustria
CityVienna
Period5/24/165/25/16

Keywords

  • Biobanking
  • Clinical trial
  • Paediatric oncology
  • Pseudonymization
  • Secondary use

ASJC Scopus subject areas

  • Biomedical Engineering
  • Health Informatics
  • Health Information Management

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