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 | |
| 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 | Austria |
| City | Vienna |
| Period | 5/24/16 → 5/25/16 |
Fingerprint
Keywords
- Biobanking
- Clinical trial
- Paediatric oncology
- Pseudonymization
- Secondary use
ASJC Scopus subject areas
- Biomedical Engineering
- Health Informatics
- Health Information Management
Cite this
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
}
TY - GEN
T1 - Piloting the european unified patient identity management (EUPID) concept to facilitate secondary use of neuroblastoma data from clinical trials and biobanking
AU - Ebner, Hubert
AU - Hayn, Dieter
AU - Falgenhauer, Markus
AU - Nitzlnader, Michael
AU - Schleiermacher, Gudrun
AU - Haupt, Riccardo
AU - Erminio, Giovanni
AU - Defferrari, Raffaella
AU - Mazzocco, Katia
AU - Kohler, Jan
AU - Tonini, Gian Paolo
AU - Ladenstein, Ruth
AU - Schreier, Guenter
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - Biobanking
KW - Clinical trial
KW - Paediatric oncology
KW - Pseudonymization
KW - Secondary use
UR - http://www.scopus.com/inward/record.url?scp=84971635759&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84971635759&partnerID=8YFLogxK
U2 - 10.3233/978-1-61499-645-3-31
DO - 10.3233/978-1-61499-645-3-31
M3 - Conference contribution
AN - SCOPUS:84971635759
VL - 223
T3 - Studies in Health Technology and Informatics
SP - 31
EP - 38
BT - Health Informatics Meets eHealth: Predictive Modeling in Healthcare - From Prediction to Prevention, Proceedings of the 10th eHealth 2016 Conference
PB - IOS Press
ER -