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

Sophie Ploos van Amstel, Marlies Noordzij, Bradley A. Warady, Francisco Cano, Jonathan C. Craig, Jaap W. Groothoff, Kenji Ishikura, Alicia M Neu, Hesham Safouh, Hong Xu, Kitty J. Jager, Franz Schaefer

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)1-9
Number of pages9
JournalPediatric Nephrology
DOIs
StateAccepted/In press - Dec 22 2017

Fingerprint

Renal Replacement Therapy
Registries
Pediatrics
Dialysis
Northern Asia
Population
Nephrology
Incidence
North America

Keywords

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

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Nephrology

Cite this

Ploos van Amstel, S., Noordzij, M., Warady, B. A., Cano, F., Craig, J. C., Groothoff, J. W., ... Schaefer, F. (Accepted/In press). Renal replacement therapy for children throughout the world: the need for a global registry. Pediatric Nephrology, 1-9. https://doi.org/10.1007/s00467-017-3863-5

Renal replacement therapy for children throughout the world : the need for a global registry. / Ploos van Amstel, Sophie; Noordzij, Marlies; Warady, Bradley A.; Cano, Francisco; Craig, Jonathan C.; Groothoff, Jaap W.; Ishikura, Kenji; Neu, Alicia M; Safouh, Hesham; Xu, Hong; Jager, Kitty J.; Schaefer, Franz.

In: Pediatric Nephrology, 22.12.2017, p. 1-9.

Research output: Contribution to journalArticle

Ploos van Amstel, S, Noordzij, M, Warady, BA, Cano, F, Craig, JC, Groothoff, JW, Ishikura, K, Neu, AM, Safouh, H, Xu, H, Jager, KJ & Schaefer, F 2017, 'Renal replacement therapy for children throughout the world: the need for a global registry', Pediatric Nephrology, pp. 1-9. https://doi.org/10.1007/s00467-017-3863-5
Ploos van Amstel S, Noordzij M, Warady BA, Cano F, Craig JC, Groothoff JW et al. Renal replacement therapy for children throughout the world: the need for a global registry. Pediatric Nephrology. 2017 Dec 22;1-9. https://doi.org/10.1007/s00467-017-3863-5
Ploos van Amstel, Sophie ; Noordzij, Marlies ; Warady, Bradley A. ; Cano, Francisco ; Craig, Jonathan C. ; Groothoff, Jaap W. ; Ishikura, Kenji ; Neu, Alicia M ; Safouh, Hesham ; Xu, Hong ; Jager, Kitty J. ; Schaefer, Franz. / Renal replacement therapy for children throughout the world : the need for a global registry. In: Pediatric Nephrology. 2017 ; pp. 1-9.
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title = "Renal replacement therapy for children throughout the world: the need for a global registry",
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.",
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AU - Ploos van Amstel, Sophie

AU - Noordzij, Marlies

AU - Warady, Bradley A.

AU - Cano, Francisco

AU - Craig, Jonathan C.

AU - Groothoff, Jaap W.

AU - Ishikura, Kenji

AU - Neu, Alicia M

AU - Safouh, Hesham

AU - Xu, Hong

AU - Jager, Kitty J.

AU - Schaefer, Franz

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N2 - 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.

AB - 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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