National and international registries have great potential for providing data that describe disease burden, treatments, and outcomes especially in rare diseases. In the setting of pediatric end-stage renal disease (ESRD), the available data are limited to highly developed countries, whereas the lack of data from emerging economies blurs the global perspective. In order to improve the pediatric dialysis care worldwide, provide global benchmarking of pediatric dialysis outcome, and assign useful tools and management algorithms based on evidence-based medicine, the International Pediatric Peritoneal Dialysis Network (IPPN) was established in 2007. In recent years, the Registry has provided comprehensive data on relevant clinical issues in pediatric peritoneal dialysis patients including nutritional status, growth, cardiovascular disease, anemia management, mineral and bone disorders, preservation of residual kidney function, access-related complications, and impact of associated comorbidities. A unique feature of the registry is the ability to compare practices and outcomes between countries and world regions. In the current review, we describe study design and collection methods, summarize the core IPPN findings based on its 12-year experience and 13 publications, and discuss the future perspective.

中文翻译：

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针对儿童的最佳 PD 管理：我们从 IPPN 登记处学到了什么？

国家和国际注册机构在提供描述疾病负担、治疗和结果的数据方面具有巨大潜力，尤其是在罕见疾病方面。在儿科终末期肾病（ESRD）的背景下，可用数据仅限于高度发达国家，而新兴经济体缺乏数据则模糊了全球视野。为了改善全球儿科透析护理，提供儿科透析结果的全球基准，并基于循证医学分配有用的工具和管理算法，国际儿科腹膜透析网络（IPPN）于 2007 年成立。近年来，登记处提供了儿科腹膜透析患者相关临床问题的综合数据，包括营养状况、生长、心血管疾病、贫血管理、矿物质和骨骼疾病、保留残余肾功能、通路相关并发症以及相关合并症的影响。该注册表的一个独特功能是能够比较国家和世界地区之间的实践和结果。在当前的审查中，我们描述了研究设计和收集方法，根据其 12 年的经验和 13 篇出版物总结了 IPPN 的核心发现，并讨论了未来的前景。