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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.
摘要：
儿科肿瘤学中的大型数据集本质上是罕见的。因此,充分利用所有可用数据至关重要，它们分布在几个资源上，包括生物材料,images,临床试验,和登记册。通过隐私保护记录链接(PPRL)，可以合并个性化或假名数据集，而不透露病人的身份。尽管PPRL在各种设置中实现，用例描述目前支离破碎且不完整。本文全面概述了PPRL在儿科肿瘤学中的当前和未来用例。我们分析了文献，项目,和试验方案，沿着假设的患者旅程确定的用例，并与儿科肿瘤学专家讨论了用例。要构造PPRL用例，我们定义了六个关键维度：分布式个性化记录，假名,分发假名记录，记录链接,链接数据,和数据分析。（a）每个维度和（b）在多维级别上描述了选定的用例。在专注于儿科肿瘤学的同时，大多数方面也适用于其他(特别罕见)疾病。我们得出结论，PPRL是儿科肿瘤学的关键概念。因此,在开始研究项目时，应该已经考虑了PPRL策略，为了避免分布式数据孤岛，为了最大化从收集的数据中获得的知识，and,最终,改善癌症儿童的预后。
