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Use Cases Requiring Privacy-Preserving Record Linkage in Paediatric Oncology
by
, , , , ,
Dieter Hayn
1,*,
Karl Kreiner
1,
Emanuel Sandner
1,
Martin Baumgartner
1,2,
Bernhard Jammerbund
1,
Markus Falgenhauer
1,
Vanessa Düster
3,
Priyanka Devi-Marulkar
4,†,
Gudrun Schleiermacher
4,
Ruth Ladenstein
3 and
Guenter Schreier
1 1
Center for Health and Bioresources, AIT Austrian Institute of Technology, 8020 Graz, Austria
2
Institute of Neural Engineering, Graz University of Technology, 8010 Graz, Austria
3
St. Anna Kinderkrebsforschungs GmbH, 1090 Wien, Austria
4
Institut Curie, 75005 Paris, France
*
Author to whom correspondence should be addressed.
†
Current address: Department of Research and Development, Unicancer, Immuno-Oncology Group, 94270 Le Kremlin-Bicêtre, France.
Cancers 2024, 16(15), 2696; https://doi.org/10.3390/cancers16152696
Submission received: 29 June 2024
/
Revised: 24 July 2024
/
Accepted: 24 July 2024
/
Published: 29 July 2024
(This article belongs to the Special Issue Advances in Cancer Data and Statistics)
Simple Summary
Large datasets concerning childhood cancers are rare. Therefore, it is important to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), datasets can be merged, without disclosing the patients’ identities. Although PPRL is already implemented or described in various settings, use case descriptions are fragmented and incomplete. The present paper gives an overview of current and future use cases of PPRL in childhood cancer. We screened the literature, projects, and trial protocols, analysed a hypothetical patient journey, and discussed use cases with experts. All the identified use cases were structured along six key dimensions. We conclude that PPRL is a key concept in childhood cancer. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer.
Abstract
Large datasets in paediatric oncology are inherently rare. Therefore, it is paramount to fully exploit all available data, which are distributed over several resources, including biomaterials, images, clinical trials, and registries. With privacy-preserving record linkage (PPRL), personalised or pseudonymised datasets can be merged, without disclosing the patients’ identities. Although PPRL is implemented in various settings, use case descriptions are currently fragmented and incomplete. The present paper provides a comprehensive overview of current and future use cases for PPRL in paediatric oncology. We analysed the literature, projects, and trial protocols, identified use cases along a hypothetical patient journey, and discussed use cases with paediatric oncology experts. To structure PPRL use cases, we defined six key dimensions: distributed personalised records, pseudonymisation, distributed pseudonymised records, record linkage, linked data, and data analysis. Selected use cases were described (a) per dimension and (b) on a multi-dimensional level. While focusing on paediatric oncology, most aspects are also applicable to other (particularly rare) diseases. We conclude that PPRL is a key concept in paediatric oncology. Therefore, PPRL strategies should already be considered when starting research projects, to avoid distributed data silos, to maximise the knowledge derived from collected data, and, ultimately, to improve outcomes for children with cancer.
