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

doi:10.3233/978-1-61499-645-3-31

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

Istituto "Giannina Gaslini"

Research output: Chapter in Book/Report/Conference proceeding › Conference 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 language	English
Title of host publication	Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference
Publisher	IOS Press
Pages	31-38
Number of pages	8
Volume	223
ISBN (Electronic)	9781614996446
DOIs	https://doi.org/10.3233/978-1-61499-645-3-31
Publication status	Published - 2016
Event	2016 10th Annual Conference on Health Informatics Meets eHealth, eHealth 2016 - Vienna, Austria Duration: May 24 2016 → May 25 2016

Publication series

Name	Studies in Health Technology and Informatics
Volume	223
ISSN (Print)	09269630
ISSN (Electronic)	18798365

Other

Other	2016 10th Annual Conference on Health Informatics Meets eHealth, eHealth 2016
Country/Territory	Austria
City	Vienna
Period	5/24/16 → 5/25/16

Keywords

Biobanking
Clinical trial
Paediatric oncology
Pseudonymization
Secondary use

ASJC Scopus subject areas

Biomedical Engineering
Health Informatics
Health Information Management

Access to Document

10.3233/978-1-61499-645-3-31

Cite this

Ebner, H., Hayn, D., Falgenhauer, M., Nitzlnader, M., Schleiermacher, G., Haupt, R., Erminio, G., Defferrari, R., Mazzocco, K., Kohler, J., Tonini, G. P., Ladenstein, R., & Schreier, G. (2016). Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking. In Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference (Vol. 223, pp. 31-38). (Studies in Health Technology and Informatics; Vol. 223). IOS Press. https://doi.org/10.3233/978-1-61499-645-3-31

Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking. / Ebner, Hubert; Hayn, Dieter; Falgenhauer, Markus; Nitzlnader, Michael; Schleiermacher, Gudrun; Haupt, Riccardo; Erminio, Giovanni; Defferrari, Raffaella; Mazzocco, Katia; Kohler, Jan; Tonini, Gian Paolo; Ladenstein, Ruth; Schreier, Guenter.

Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference. Vol. 223 IOS Press, 2016. p. 31-38 (Studies in Health Technology and Informatics; Vol. 223).

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

Ebner, H, Hayn, D, Falgenhauer, M, Nitzlnader, M, Schleiermacher, G, Haupt, R, Erminio, G, Defferrari, R, Mazzocco, K, Kohler, J, Tonini, GP, Ladenstein, R & Schreier, G 2016, Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking. in Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference. vol. 223, Studies in Health Technology and Informatics, vol. 223, IOS Press, pp. 31-38, 2016 10th Annual Conference on Health Informatics Meets eHealth, eHealth 2016, Vienna, Austria, 5/24/16. https://doi.org/10.3233/978-1-61499-645-3-31

Ebner H, Hayn D, Falgenhauer M, Nitzlnader M, Schleiermacher G, Haupt R et al. Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking. In Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference. Vol. 223. IOS Press. 2016. p. 31-38. (Studies in Health Technology and Informatics). https://doi.org/10.3233/978-1-61499-645-3-31

Ebner, Hubert ; Hayn, Dieter ; Falgenhauer, Markus ; Nitzlnader, Michael ; Schleiermacher, Gudrun ; Haupt, Riccardo ; Erminio, Giovanni ; Defferrari, Raffaella ; Mazzocco, Katia ; Kohler, Jan ; Tonini, Gian Paolo ; Ladenstein, Ruth ; Schreier, Guenter. / Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking. Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference. Vol. 223 IOS Press, 2016. pp. 31-38 (Studies in Health Technology and Informatics).

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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.",

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

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Keywords

ASJC Scopus subject areas

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