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Renal replacement therapy for children throughout the world: the need for a global registry
Sophie Ploos van Amstel1, Marlies Noordzij2, Bradley A Warady3
1IPNA 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.
Insights
Pediatric renal replacement therapy (RRT) is available in most countries, but national registries are lacking. An international registry is now initiated to improve global data collection on pediatric RRT.
Area of Science:
- Pediatric Nephrology
- Public Health
- Epidemiology
Background:
- Information on pediatric renal replacement therapy (RRT) incidence requires data from RRT registries.
- Existing pediatric RRT registries worldwide are not comprehensively documented.
Purpose of the Study:
- To provide an overview of global pediatric RRT registries.
- To identify regions needing enhanced pediatric RRT data collection.
- To establish the rationale for a global pediatric RRT registry.
Main Methods:
- A global survey of pediatric RRT registry status was distributed to International Pediatric Nephrology Association (IPNA) members in 127 countries.
- A systematic literature search was conducted to identify active pediatric RRT registries.
- Survey responses from 94 countries were analyzed.
Main Results:
- 84 countries (81.2% of the global child population) can provide pediatric RRT.
- National pediatric RRT registries exist in 51 countries; 18 countries lack any registry for children on RRT.
- 92 pediatric RRT registries were identified, predominantly in Europe, North America, and Asia.
Conclusions:
- Despite RRT availability in most countries, national pediatric registries are often absent.
- An international, population-based pediatric RRT registry has been established.
- This initiative aims to enhance global knowledge of pediatric RRT incidence and outcomes.
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.
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