Targeting optimal PD management in children: what have we learned from the IPPN registry?

Abstract

AbstractNational 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.