Oomen Loes, De Wall Liesbeth L, Krupka Kai, Tönshoff Burkhard, Wlodkowski Tanja, Van Der Zanden Loes Fm, Bonthuis Marjolein, Duus Weinreich Ilse D, Koster-Kamphuis Linda, Feitz Wout Fj, Bootsma-Robroeks Charlotte Mhht
Division of Paediatric Urology, Department of Urology, Radboudumc Amalia Children's Hospital, Nijmegen, Netherlands.
CERTAIN Registry, Department of Paediatrics I, University Children's Hospital Heidelberg, Heidelberg, Germany.
Front Pediatr. 2023 Mar 22;11:1121282. doi: 10.3389/fped.2023.1121282. eCollection 2023.
Patient data are increasingly available in (multi)national registries, especially for rare diseases. This study aims to provide an overview of current European registries of paediatric kidney transplantation (PKT) care, their coverage, and their focus. Based on these data, we assess whether the current status is optimal for achieving our common goal: the optimalisation of health care.
A list of all PKT centres within the European Union (EU) as well as active PKT registries was compiled using existing literature and the European Platform on Rare Disease Registration. Registry staff members were contacted to obtain information about the parameters collected and the registry design. These data were compared between registries.
In total, 109 PKT centres performing PKT surgery were identified in the 27 EU Member States. Currently, five European PKT registries are actively collecting data. In 39% of these centres, no data were registered within any of these five existing international registries. A large variety was observed in the number of patients, centres, and countries involved in the registries. Furthermore, variability existed regarding the inclusion criteria, definitions used, and parameters collected. Collection of perioperative urologic data are currently underrepresented in the registries.
Currently, multiple registries are collecting valuable information in the field of PKT, covering the majority of PKT centres in Europe. Due to a large variety in the parameters collected as well as different focuses, data collection is currently fragmented and suboptimal; therefore, the current existing data are incomplete. In addition, a considerable proportion of the transplantation centres do not enter data in any international registry. Combining available information and harmonising future data collection could empower the aim of these registries-namely increasing insights into the strengths and potential of current care and therefore improve healthcare.
患者数据在（多）国家登记处越来越容易获取，尤其是对于罕见病而言。本研究旨在概述当前欧洲小儿肾移植（PKT）护理登记处的情况、其覆盖范围及其重点。基于这些数据，我们评估当前状况是否最有利于实现我们的共同目标：优化医疗保健。
利用现有文献和欧洲罕见病登记平台编制了欧盟（EU）内所有PKT中心以及活跃的PKT登记处的清单。与登记处工作人员联系以获取有关收集的参数和登记处设计的信息。对各登记处之间的这些数据进行了比较。
在27个欧盟成员国中，共确定了109个进行PKT手术的PKT中心。目前，有五个欧洲PKT登记处在积极收集数据。在这些中心中，39%没有在这五个现有国际登记处中的任何一个登记数据。各登记处涉及的患者数量、中心数量和国家数量差异很大。此外，在纳入标准、使用的定义和收集的参数方面也存在差异。围手术期泌尿外科数据的收集目前在登记处中所占比例较低。
目前，多个登记处在PKT领域收集有价值的信息，覆盖了欧洲大部分PKT中心。由于收集的参数种类繁多以及重点不同，目前数据收集零散且不理想；因此，现有数据不完整。此外，相当一部分移植中心没有在任何国际登记处输入数据。整合现有信息并统一未来的数据收集可以实现这些登记处的目标，即增强对当前护理优势和潜力的了解，从而改善医疗保健。
