AIT Austrian Institute of Technology GmbH, Graz, Austria.
Goethe University Frankfurt, University Hospital, Institute of Medical Informatics (IMI), Frankfurt am Main, Germany.
Stud Health Technol Inform. 2024 Aug 22;316:1442-1446. doi: 10.3233/SHTI240683.
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.
数据的二次使用对于研究目的尤其重要，因为根据定义，数据是稀缺的。欧洲罕见病联合计划（EJP RD）旨在开发一种支持数据二次使用的罕见病基础设施。大量的罕见病数据 a）分布广泛，b）仅以化名形式提供。隐私保护记录链接（PPRL）涉及在不披露参与者身份的情况下链接此类分布式数据集。我们提出了一个将 PPRL 服务链接到 EJP RD 虚拟平台（VP）的概念。通过在 PPRL 服务中运行 FDP 提供第 1 级（资源发现）连接。在第 2 级（数据可发现性）中，PPRL 服务可以代表单个和目录端点。我们的解决方案可以在支持 PPRL 的资源中计算患者数量，只计算一次重复患者，并仅计算注册到多个资源的患者。目前，我们正在 EJP RD VP 内准备部署。
