{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,28]],"date-time":"2026-02-28T01:57:30Z","timestamp":1772243850860,"version":"3.50.1"},"reference-count":0,"publisher":"IOS Press","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2016]]},"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3233\/978-1-61499-645-3-31","type":"book-chapter","created":{"date-parts":[[2025,2,22]],"date-time":"2025-02-22T18:19:26Z","timestamp":1740248366000},"source":"Crossref","is-referenced-by-count":1,"title":["Piloting the European Unified Patient Identity Management (EUPID) Concept to Facilitate Secondary Use of Neuroblastoma Data from Clinical Trials and Biobanking"],"prefix":"10.3233","author":[{"family":"Ebner Hubert","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Hayn Dieter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Falgenhauer Markus","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Nitzlnader Michael","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Schleiermacher Gudrun","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Haupt Riccardo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Erminio Giovanni","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Defferrari Raffaella","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Mazzocco Katia","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Kohler Jan","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Tonini Gian Paolo","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Ladenstein Ruth","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"family":"Schreier Guenter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","Health Informatics Meets eHealth"],"original-title":[],"deposited":{"date-parts":[[2025,2,22]],"date-time":"2025-02-22T18:56:42Z","timestamp":1740250602000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.medra.org\/servlet\/aliasResolver?alias=iospressISBN&isbn=978-1-61499-644-6&spage=31&doi=10.3233\/978-1-61499-645-3-31"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016]]},"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/978-1-61499-645-3-31","relation":{"is-cited-by":[{"id-type":"doi","id":"10.1080\/23294515.2020.1818875","asserted-by":"object"}]},"ISSN":["0926-9630"],"issn-type":[{"value":"0926-9630","type":"print"}],"subject":[],"published":{"date-parts":[[2016]]}}}