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.
Highlights
End-stage kidney disease (ESKD) is a rare condition in childhood with an annual incidence ranging from 4 to 14 and a prevalence from 18 to 100 per million age-related population [1, 2]
In the context of findings streaming from large prospective trials in adults linking the normalization of hemoglobin and high erythropoietinstimulating agents (ESA) dosing with adverse outcomes and increased mortality [24–26], the International Pediatric Peritoneal Dialysis Network (IPPN) database was interrogated to gain insight into anemia treatment paradigms in dialyzed children
To address the all-important clinical question of the optimal HB concentration in children on peritoneal dialysis (PD), a comparison of different achieved HB ranges revealed a significant increase in patient mortality associated with a mean achieved HB < 11 g/dl, which is in line with published pediatric hemodialysis data, but in contrast to adult interventional trials in which high HB levels predicted cardiovascular events and overall mortality [24–26, 28]
Summary
End-stage kidney disease (ESKD) is a rare condition in childhood with an annual incidence ranging from 4 to 14 and a prevalence from 18 to 100 per million age-related population [1, 2] The reason for this variation is multifactorial and can be explained both by non-modifiable ethnic and genetic factors, as well as by differences in national wealth and healthcare organization expenditures, which affect access to renal replacement therapies (RRT) including kidney transplantation, peritoneal dialysis, and hemodialysis. To address the need for a more global perspective on PD and to facilitate collaborative international research in pediatric dialysis care, the International Pediatric Peritoneal Dialysis Network (IPPN) was established in 2007 The aims of this initiative were to (i) collect comprehensive information about pediatric dialysis care worldwide, (ii) provide useful tools and management algorithms for daily clinical practice, (iii) provide global benchmarking of pediatric dialysis outcomes, and (iv) provide a basis to perform prospective observational studies in pediatric dialysis. Since 2007, over 3700 PD patients and 900 HD patients have been enrolled
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