{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,10]],"date-time":"2026-02-10T13:19:35Z","timestamp":1770729575393,"version":"3.49.0"},"reference-count":0,"publisher":"IOS Press","isbn-type":[{"value":"9781643685335","type":"electronic"}],"license":[{"start":{"date-parts":[[2024,8,22]],"date-time":"2024-08-22T00:00:00Z","timestamp":1724284800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,8,22]]},"abstract":"<jats:p>Secondary use of data for research purposes is especially important in rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format. Privacy-Preserving Record Linkage (PPRL) concerns the linking of such distributed datasets without disclosing the participant\u2019s identities. We present a concept for linking a PPRL Service to the EJP RD Virtual Platform (VP). Level 1 (resource discovery) connection is provided by running an FDP within the PPRL Service. On Level 2 (data discoverability), the PPRL Service can represent both, an individual and a catalog endpoint. Our solution can count patients in PPRL-supporting resources, count duplicates only once, and count only patients registered to multiple resources. Currently, we are preparing the deployment within the EJP RD VP.<\/jats:p>","DOI":"10.3233\/shti240683","type":"book-chapter","created":{"date-parts":[[2024,8,23]],"date-time":"2024-08-23T10:18:43Z","timestamp":1724408323000},"source":"Crossref","is-referenced-by-count":2,"title":["Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform"],"prefix":"10.3233","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1822-9033","authenticated-orcid":false,"given":"Dieter","family":"Hayn","sequence":"first","affiliation":[{"name":"AIT Austrian Institute of Technology GmbH, Graz, Austria"}]},{"given":"Emanuel","family":"Sandner","sequence":"additional","affiliation":[{"name":"AIT Austrian Institute of Technology GmbH, Graz, Austria"}]},{"given":"Abishaa","family":"Vengadeswaran","sequence":"additional","affiliation":[{"name":"Goethe University Frankfurt, University Hospital, Institute of Medical Informatics (IMI), Frankfurt am Main, Germany"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-7339-7175","authenticated-orcid":false,"given":"Elena-Alexandra","family":"T\u00e3taru","sequence":"additional","affiliation":[{"name":"French National Institute of Health and Medical Research (INSERM), Paris, France"}]},{"given":"Mark","family":"Wilkinson","sequence":"additional","affiliation":[{"name":"Departamento de Biotecnolog\u00eda-Biolog\u00eda Vegetal, Escuela T\u00e9cnica Superior de Ingenier\u00eda Agron\u00f3mica, Alimentaria y de Biosistemas, Centro de Biotecnolog\u00eda y Gen\u00f3mica de Plantas UPM-INIA, Universidad Polit\u00e9cnica de Madrid (UPM), Instituto Nacional de Investigaci\u00f3n y Tecnolog\u00eda Agraria y Alimentaria (INIA\/CSIC), Madrid, Spain"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6758-2506","authenticated-orcid":false,"given":"Marc","family":"Hanauer","sequence":"additional","affiliation":[{"name":"French National Institute of Health and Medical Research (INSERM), Paris, France"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6066-9708","authenticated-orcid":false,"given":"Karl","family":"Kreiner","sequence":"additional","affiliation":[{"name":"AIT Austrian Institute of Technology GmbH, Graz, Austria"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3724-4255","authenticated-orcid":false,"given":"Guenter","family":"Schreier","sequence":"additional","affiliation":[{"name":"AIT Austrian Institute of Technology GmbH, Graz, Austria"}]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","Digital Health and Informatics Innovations for Sustainable Health Care Systems"],"original-title":[],"link":[{"URL":"https:\/\/ebooks.iospress.nl\/pdf\/doi\/10.3233\/SHTI240683","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,8,23]],"date-time":"2024-08-23T10:18:43Z","timestamp":1724408323000},"score":1,"resource":{"primary":{"URL":"https:\/\/ebooks.iospress.nl\/doi\/10.3233\/SHTI240683"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,22]]},"ISBN":["9781643685335"],"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/shti240683","relation":{},"ISSN":["0926-9630","1879-8365"],"issn-type":[{"value":"0926-9630","type":"print"},{"value":"1879-8365","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,22]]}}}