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Pediatr Nephrol. 2018 May;33(5):863-871. doi: 10.1007/s00467-017-3863-5. Epub 2017 Dec 22.

Renal replacement therapy for children throughout the world: the need for a global registry.

Author information

1
IPNA Global RRT Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam Public Health research institute, University of Amsterdam, PO Box 22700, 1100 DE, Amsterdam, The Netherlands. s.ploosvanamstel@amc.uva.nl.
2
IPNA Global RRT Registry, Department of Medical Informatics, Academic Medical Center, Amsterdam Public Health research institute, University of Amsterdam, PO Box 22700, 1100 DE, Amsterdam, The Netherlands.
3
Division of Nephrology, Children's Mercy Kansas City, University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA.
4
Division of Pediatrics, Luis Calvo Mackenna Children's Hospital, Faculty of Medicine, University of Chile, Santiago, Chile.
5
Department of Nephrology, Children's Hospital at Westmead, School of Public Health, University of Sydney, Sydney, Australia.
6
Department of Pediatric Nephrology, Emma Children's Hospital AMC, University of Amsterdam, Amsterdam, The Netherlands.
7
Division of Nephrology and Rheumatology, National Center for Child Health and Development, Tokyo, Japan.
8
Division of Pediatric Nephrology, The Johns Hopkins University School of Medicine, Baltimore, MD, USA.
9
Pediatric Nephrology Unit, Faculty of Medicine, Cairo University, Cairo, Egypt.
10
Kidney Development & Pediatric Kidney Disease Research Center, Children's Hospital of Fudan University, Shanghai, China.
11
Division of Pediatric Nephrology, Heidelberg University Center for Pediatrics and Adolescent Medicine, Heidelberg, Germany.

Abstract

BACKGROUND:

To describe the factors affecting the incidence of renal replacement therapy (RRT) among children, information from RRT registries is required. We aimed to give an overview of existing pediatric RRT registries worldwide, identify regions with a need to commence or increase data collection on pediatric RRT, and provide a rationale for developing a global RRT registry.

METHODS:

A survey assessing pediatric RRT registry status was sent to International Pediatric Nephrology Associateion (IPNA) members in 127 countries in January 2016. The survey was complemented by a systematic literature search for active pediatric RRT registries.

RESULTS:

Complete survey responses were retrieved from 94 countries (representing 86.2% of the world childhood population), with 84 (81.2%) having the means to provide RRT to children, given that there are no other limitations such as financial, social, or religious restraints. Fifty-one (35.3%) countries had national registries for both dialysis and transplantation, nine (30.0%) either had a dialysis or a transplant registry, six participated in international registries only (2.7%), and in 18 (13.2%), children on RRT were not followed in any registry. The search identified 92 pediatric RRT registries, primarily national registries located in Europe, North America, and Asia.

CONCLUSIONS:

Although pediatric RRT can be provided in 84 countries representing 81.2% of the world's childhood population, national pediatric RRT registries are unavailable in many countries. To improve knowledge about the incidence and outcomes of pediatric RRT around the globe, an international population-based pediatric RRT registry has recently been initiated.

KEYWORDS:

Dialysis; Epidemiology; Kidney transplantation; Registry; Renal replacement therapy

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