| Title: |
Privacy-Preserving Linkage of Distributed Pseudonymised Datasets in a Virtual European Rare Disease Platform |
| Authors: |
Hayn, Dieter; Sandner, Emanuel; Vengadeswaran, Abishaa; Tãtaru, Elena Alexandra; Wilkinson, Mark D.; Hanauer, Marc; Kreiner, Karl; Schreier, Guenter |
| Contributors: |
European Commission; Hayn, Dieter; Vengadeswaran, Abishaa; Tãtaru, Elena Alexandra; Wilkinson, Mark D.; Hanauer, Marc; Kreiner, Karl; Schreier, Guenter; Consejo Superior de Investigaciones Científicas https://ror.org/02gfc7t72 |
| Publisher Information: |
IOS Press |
| Publication Year: |
2024 |
| Collection: |
Digital.CSIC (Consejo Superior de Investigaciones Científicas / Spanish National Research Council) |
| Subject Terms: |
European health data space (EHDS); Privacy-preserving record linkage (PPRL); Rare diseases; Research infrastructure; Secondary use |
| Description: |
5 Pág. ; 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's 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. ; This work was supported by the EJP RD (Grant-number 825575). ; Peer reviewed |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
English |
| Relation: |
#PLACEHOLDER_PARENT_METADATA_VALUE#; info:eu-repo/grantAgreement/EC/H2020/825575; Centro de Biotecnología y Genómica de Plantas (CBGP); https://doi.org/10.3233/SHTI240683; Sí; https://hdl.handle.net/10261/369324; http://dx.doi.org/10.13039/501100000780; https://api.elsevier.com/content/abstract/scopus_id/85202005880 |
| DOI: |
10.3233/SHTI240683 |
| DOI: |
10.13039/501100000780 |
| Availability: |
https://hdl.handle.net/10261/369324; https://doi.org/10.3233/SHTI240683; https://doi.org/10.13039/501100000780; https://api.elsevier.com/content/abstract/scopus_id/85202005880 |
| Rights: |
info:eu-repo/semantics/openAccess |
| Accession Number: |
edsbas.90B96C98 |
| Database: |
BASE |