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Use Cases Requiring Privacy-Preserving Record Linkage in Paediatric Oncology.

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Privacy-preserving record linkage (PPRL) is crucial for rare paediatric oncology data. Implementing PPRL strategies early maximizes insights from distributed data, ultimately improving cancer outcomes for children.

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Area of Science:

  • Oncology
  • Bioinformatics
  • Data Science

Background:

  • Paediatric oncology datasets are rare and fragmented across multiple resources.
  • Existing data linkage methods often compromise patient privacy.
  • A comprehensive understanding of privacy-preserving record linkage (PPRL) use cases is lacking.

Purpose of the Study:

  • To provide a comprehensive overview of current and future use cases for PPRL in paediatric oncology.
  • To structure and analyze PPRL use cases based on key dimensions.
  • To highlight the importance of PPRL for rare disease research.

Main Methods:

  • Literature review, analysis of projects and trial protocols.
  • Identification of use cases along a hypothetical patient journey.
  • Expert consultations with paediatric oncology specialists.
  • Definition of six key dimensions for structuring PPRL use cases.

Main Results:

  • Identified and described PPRL use cases across six defined dimensions.
  • Demonstrated the applicability of PPRL in integrating biomaterials, images, clinical trials, and registries.
  • Highlighted that most PPRL aspects are transferable to other rare diseases.

Conclusions:

  • PPRL is a fundamental concept for advancing paediatric oncology research.
  • Early integration of PPRL strategies is essential to prevent data silos.
  • Effective PPRL implementation maximizes knowledge discovery and improves outcomes for children with cancer.