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Published in: Pediatric Nephrology 5/2018

Open Access 01-05-2018 | Original Article

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

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

Published in: Pediatric Nephrology | Issue 5/2018

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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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Literature
1.
go back to reference Liyanage T, Ninomiya T, Jha V, Jha V, Neal B, Patrice HM, Okpechi I, Zhao MH, Lu J, Garg AX, Knight J, Rodgers A, Gallagher M, Kotwal S, Cass A, Perkovic V (2015) Worldwide access to treatment for end-stage kidney disease: a systematic review. Lancet 385:1975–1982CrossRefPubMed Liyanage T, Ninomiya T, Jha V, Jha V, Neal B, Patrice HM, Okpechi I, Zhao MH, Lu J, Garg AX, Knight J, Rodgers A, Gallagher M, Kotwal S, Cass A, Perkovic V (2015) Worldwide access to treatment for end-stage kidney disease: a systematic review. Lancet 385:1975–1982CrossRefPubMed
2.
go back to reference Harambat J, Ekulu PM (2016) Inequalities in access to pediatric ESRD care: a global health challenge. Pediatr Nephrol 31:353–358CrossRefPubMed Harambat J, Ekulu PM (2016) Inequalities in access to pediatric ESRD care: a global health challenge. Pediatr Nephrol 31:353–358CrossRefPubMed
3.
go back to reference Chesnaye NC, Schaefer F, Groothoff JW, Caskey FJ, Heaf JG, Kushirenko S, Lewis M, Mauel R, Maurer E, Merenmies J, Dhtiza D, Topaloglu R, Zaivoca N, Zampetoglou A, Jager KJ, van Stralen KJ (2015) Disparities in treatment rates of paediatric end-stage renal disease across Europe: insights from the ESPN/ERA-EDTA registry. Nephrol Dial Transplant 30:1377–1385CrossRefPubMed Chesnaye NC, Schaefer F, Groothoff JW, Caskey FJ, Heaf JG, Kushirenko S, Lewis M, Mauel R, Maurer E, Merenmies J, Dhtiza D, Topaloglu R, Zaivoca N, Zampetoglou A, Jager KJ, van Stralen KJ (2015) Disparities in treatment rates of paediatric end-stage renal disease across Europe: insights from the ESPN/ERA-EDTA registry. Nephrol Dial Transplant 30:1377–1385CrossRefPubMed
4.
go back to reference Glicklich R, Dreyer N, Leavy M, Eds. (2014) Registries for Evaluating Patient Outcomes: A User’s Guide. Third Edition. Two volumes.) Prepared by the Outcome DeCIDE Center [Outcome Sciences, Inc., a Quintiles company] under contract No. 290 2005 00351 TO7.). AHRQ Publ No 13(14)-EHC111 Rockville, MD Agency Healthcare Research Quality Glicklich R, Dreyer N, Leavy M, Eds. (2014) Registries for Evaluating Patient Outcomes: A User’s Guide. Third Edition. Two volumes.) Prepared by the Outcome DeCIDE Center [Outcome Sciences, Inc., a Quintiles company] under contract No. 290 2005 00351 TO7.). AHRQ Publ No 13(14)-EHC111 Rockville, MD Agency Healthcare Research Quality
5.
go back to reference Solomon DJ, Henry RC, Hogan JG, Van Amburg GH, Taylor J (1991) Evaluation and implementation of public health registries. Public Health Rep 106:142–150PubMedPubMedCentral Solomon DJ, Henry RC, Hogan JG, Van Amburg GH, Taylor J (1991) Evaluation and implementation of public health registries. Public Health Rep 106:142–150PubMedPubMedCentral
6.
go back to reference Lim TO, Goh A, Lim YN, Morad Z (2008) Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region? Nephrology 13:745–752CrossRefPubMed Lim TO, Goh A, Lim YN, Morad Z (2008) Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region? Nephrology 13:745–752CrossRefPubMed
7.
9.
go back to reference Rizvi SAH, Sultan S, Zafar MN, Naqvi SAA, Lanewala AA, Hashmi S, Aziz T, Hassan AS, Ali B, Mohsin R, Mubarak M, Farasat S, Akhtar SF, Hasmi A, Hussain M, Hussain Z (2013) Pediatric kidney transplantation in the developing world: challenges and solutions. Am J Transplant 13:2441–2449CrossRefPubMed Rizvi SAH, Sultan S, Zafar MN, Naqvi SAA, Lanewala AA, Hashmi S, Aziz T, Hassan AS, Ali B, Mohsin R, Mubarak M, Farasat S, Akhtar SF, Hasmi A, Hussain M, Hussain Z (2013) Pediatric kidney transplantation in the developing world: challenges and solutions. Am J Transplant 13:2441–2449CrossRefPubMed
10.
go back to reference Barsoum RS (2002) Overview: end-stage renal disease in the developing world. Artif Organs 26:737–746CrossRefPubMed Barsoum RS (2002) Overview: end-stage renal disease in the developing world. Artif Organs 26:737–746CrossRefPubMed
11.
go back to reference Nogueira PCK, de Carvalho MFC, de Santis Feltran L, Konstantyner T, Sesso R (2016) Inequality in pediatric kidney transplantation in Brazil. Pediatr Nephrol 31:501–507CrossRefPubMed Nogueira PCK, de Carvalho MFC, de Santis Feltran L, Konstantyner T, Sesso R (2016) Inequality in pediatric kidney transplantation in Brazil. Pediatr Nephrol 31:501–507CrossRefPubMed
12.
go back to reference Tjaden LA, Noordzij M, van Stralen KJ, Kuehni CE, Raes A, EAM C, O’Brien C, Papachristou F, Schaefer F, Groothoff JW, Jager KJ, ESPN/ERA-EDTA Registry Study Group (2015) Racial disparities in access to and outcomes of kidney transplantation in children, adolescents, and young adults: results from the ESPN/ERA-EDTA (European Society of Pediatric Nephrology/European Renal Association−European Dialysis and Transplant Association) registry. Am J Kidney Dis 67:2931–2301 Tjaden LA, Noordzij M, van Stralen KJ, Kuehni CE, Raes A, EAM C, O’Brien C, Papachristou F, Schaefer F, Groothoff JW, Jager KJ, ESPN/ERA-EDTA Registry Study Group (2015) Racial disparities in access to and outcomes of kidney transplantation in children, adolescents, and young adults: results from the ESPN/ERA-EDTA (European Society of Pediatric Nephrology/European Renal Association−European Dialysis and Transplant Association) registry. Am J Kidney Dis 67:2931–2301
13.
go back to reference Razeen Davids M, Eastwood JB, Selwood NH, Arogundade FA, Ashuntantang G, Gharbi MB, Jarraya F, MacPhee IAM, McCulloch M, Plange-Rhule J, Swanepoe CR, Adu D (2016) A renal registry for Africa: first steps. Clin Kidney J 9:162–167CrossRefPubMed Razeen Davids M, Eastwood JB, Selwood NH, Arogundade FA, Ashuntantang G, Gharbi MB, Jarraya F, MacPhee IAM, McCulloch M, Plange-Rhule J, Swanepoe CR, Adu D (2016) A renal registry for Africa: first steps. Clin Kidney J 9:162–167CrossRefPubMed
Metadata
Title
Renal replacement therapy for children throughout the world: the need for a global registry
Authors
Sophie Ploos van Amstel
Marlies Noordzij
Bradley A. Warady
Francisco Cano
Jonathan C. Craig
Jaap W. Groothoff
Kenji Ishikura
Alicia Neu
Hesham Safouh
Hong Xu
Kitty J. Jager
Franz Schaefer
Publication date
01-05-2018
Publisher
Springer Berlin Heidelberg
Published in
Pediatric Nephrology / Issue 5/2018
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI
https://doi.org/10.1007/s00467-017-3863-5

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