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Targeting optimal PD management in children: what have we learned from the IPPN registry?
Dagmara Borzych-Dużałka1, Franz Schaefer2, Bradley A Warady3
1Department of Pediatrics, Nephrology and Hypertension, Medical University of Gdańsk, Gdańsk, Poland. dagab@gumed.edu.pl.
Insights
The International Pediatric Peritoneal Dialysis Network (IPPN) registry improves global pediatric dialysis care by collecting data on treatments and outcomes. It provides crucial insights into rare diseases, enhancing worldwide patient management.
Area of Science:
- Nephrology
- Pediatrics
- Epidemiology
Background:
- Limited data on pediatric end-stage renal disease (ESRD) exists globally, particularly from emerging economies.
- A comprehensive global perspective on pediatric dialysis is essential for improving care and outcomes.
- The International Pediatric Peritoneal Dialysis Network (IPPN) was established to address this data gap.
Purpose of the Study:
- To establish a global registry for pediatric peritoneal dialysis (PD) patients.
- To collect comprehensive data on clinical issues in pediatric PD.
- To enable global benchmarking and evidence-based management strategies for pediatric ESRD.
Main Methods:
- The IPPN registry was established in 2007, collecting data over 12 years.
- Data collection focuses on nutritional status, growth, cardiovascular disease, anemia, mineral and bone disorders, residual kidney function, and complications.
- The registry facilitates comparisons of practices and outcomes across countries and regions.
Main Results:
- The IPPN registry has provided extensive data on key clinical aspects of pediatric PD.
- 13 publications summarize core findings from the 12-year experience.
- The registry enables unique cross-national comparisons of pediatric dialysis practices and outcomes.
Conclusions:
- The IPPN registry is a valuable resource for understanding and improving pediatric dialysis care worldwide.
- It provides essential data for evidence-based medicine and global benchmarking.
- Future perspectives include continued data collection and analysis to further enhance pediatric ESRD management.
Abstract:
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.
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