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.
在儿科肿瘤学领域，大型数据集本身较为罕见。因此，充分利用所有可用数据至关重要，这些数据分布在多个资源中，包括生物材料、影像资料、临床试验和注册登记库。通过隐私保护记录链接技术，可以在不泄露患者身份信息的情况下，合并个性化或假名化的数据集。尽管隐私保护记录链接已在多种场景中应用，但目前其用例描述仍较为零散且不完整。本文全面概述了隐私保护记录链接在儿科肿瘤学中当前及未来的应用场景。我们通过分析文献、研究项目和试验方案，沿着假设的患者诊疗路径识别应用场景，并与儿科肿瘤学专家讨论了相关用例。为系统梳理隐私保护记录链接的应用场景，我们定义了六个关键维度：分布式个性化记录、假名化处理、分布式假名化记录、记录链接、链接数据以及数据分析。我们分别从（a）单一维度和（b）多维度层面对选定用例进行了阐述。虽然聚焦于儿科肿瘤学，但大多数方面同样适用于其他（特别是罕见）疾病。我们的结论是：隐私保护记录链接是儿科肿瘤学研究的关键技术。因此，在启动研究项目时就应考虑采用隐私保护记录链接策略，以避免形成分散的数据孤岛，最大限度地利用所收集数据中蕴含的知识，最终改善儿童癌症患者的治疗结局。
Use Cases Requiring Privacy-Preserving Record Linkage in Paediatric Oncology
肿瘤(癌症)患者之家