Top

Published in:

01-11-2016 | Educational Review

Lessons learned from the ESPN/ERA–EDTA Registry

Authors: Jérôme Harambat, Marjolein Bonthuis, Jaap W. Groothoff, Franz Schaefer, E. Jane Tizard, Enrico Verrina, Karlijn J. van Stralen, Kitty J. Jager

Published in: Pediatric Nephrology | Issue 11/2016

Abstract

End-stage renal disease (ESRD) in children is a medically challenging condition. Due to its rarity and special features, methodologically sound collaborative studies are required. In 2007, a new European registry of pediatric renal replacement therapy (RRT), the ESPN/ERA–EDTA Registry, was launched. In recent years, the Registry has provided comprehensive data on incidence, prevalence, patient characteristics, RRT modalities, and mortality in pediatric ESRD, along with relevant insights into cardiovascular risk, anemia, nutrition and growth, transplantation outcomes, and rare diseases. In this review, we describe the study design and structure underlying the ESPN/ERA–EDTA Registry, summarize the major research findings from more than 20 publications, and discuss current limitations and the future challenges to overcome.

Available only for authorised users

Jager KJ, Wanner C (2015) Fifty years of ERA–EDTA registry—a registry in transition. Kidney Int Suppl 5:12–14CrossRef

Schärer K (1971) Incidence and causes of chronic renal failure in childhood. Proc Eur Dial Transplant Assoc 8:211–217

Schärer K, Brunner FP, Gurland HJ, Härlen H, Parsons FM (1972) Combined report on regular dialysis and renal transplantation of children in Europe, 1971. Proc Eur Dial Transplant Assoc 9:191–200PubMed

Broyer M, Chantler C, Donckerwolcke R, Ehrich JH, Rizzoni G, Schärer K (1993) The paediatric registry of the european dialysis and transplant association: 20 years’ experience. Pediatr Nephrol 7:758–768CrossRefPubMed

Mehls O, Rigden S, Ehrich JH, Berthoux F, Jones EH, Valderrábano F (1996) Report on management of renal failure in Europe, XXV, 1994. The child–adult interface the EDTA–ERA Registry European Dialysis and Transplant Association–European Renal Association. Nephrol Dial Transplant 11[Suppl 1]:22–36CrossRefPubMed

Tizard EJ, Verrina E, van Stralen KJ, Jager KJ (2009) Progress with the European Society for Paediatric Nephrology (ESPN)/ERA–EDTA Registry for children with established renal failure (ERF). Nephrol Dial Transplant 24:2615–2617CrossRefPubMedPubMedCentral

Chesnaye N, Bonthuis M, Schaefer F, Groothoff JW, Verrina E, Heaf JG, Jankauskiene A, Lukosiene V, Molchanova EA, Mota C, Peco-Antić A, Ratsch IM, Bjerre A, Roussinov DL, Sukalo A, Topaloglu R, Van Hoeck K, Zagozdzon I, Jager KJ, Van Stralen KJ, ESPN/ERA–EDTA registry (2014) Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry. Pediatr Nephrol 29:2403–2410

van Stralen KJ, Tizard EJ, Verrina E, Schaefer F, Jager KJ, European Society for Paediatric Nephrology/European Renal Association–European Dialysis and Transplant Association (ESPN/ERA–EDTA) Registry study group (2010) Demographics of paediatric renal replacement therapy in Europe: 2007 annual report of the ESPN/ERA–EDTA Registry. Pediatr Nephrol 25:1379–1382

Registry ERA-EDTA (2014) ERA–EDTA Registry annual report 2012. Department of Medical Informatics, Academic Medical Center, Amsterdam

10.

Chesnaye NC, Schaefer F, Groothoff JW, Caskey FJ, Heaf JG, Kushnirenko S, Lewis M, Mauel R, Maurer E, Merenmies J, Shtiza D, Topaloglu R, Zaicova 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 30:1377–1385

11.

Harambat J, van Stralen KJ, Kim JJ, Tizard EJ (2012) Epidemiology of chronic kidney disease in children. Pediatr Nephrol 27:363–373CrossRefPubMed

12.

U.S. Renal Data System (USRDS) (2012) Annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda

13.

van Stralen KJ, Tizard EJ, Jager KJ, Schaefer F, Vondrak K, Groothoff JW, Podracká L, Holmberg C, Jankauskiené A, Lewis MA, van Damme-Lombaerts R, Mota C, Niaudet P, Novljan G, Peco-Antic A, Sahpazova E, Toots U, Verrina E (2010) Determinants of eGFR at start of renal replacement therapy in paediatric patients. Nephrol Dial Transplant 25:3325–3332CrossRefPubMed

14.

Schaefer F, Borzych-Duzalka D, Azocar M, Munarriz RL, Sever L, Aksu N, Barbosa LS, Galan YS, Xu H, Coccia PA, Szabo A, Wong W, Salim R, Vidal E, Pottoore S, Warady BA, IPPN investigators (2012) Impact of global economic disparities on practices and outcomes of chronic peritoneal dialysis in children: insights from the International Pediatric Peritoneal Dialysis Network Registry. Perit Dial Int 32:399–409CrossRefPubMedPubMedCentral

15.

Harambat J, van Stralen KJ, Schaefer F, Grenda R, Jankauskiene A, Kostic M, Macher MA, Maxwell H, Puretic Z, Raes A, Rubik J, Sørensen SS, Toots U, Topaloglu R, Tönshoff B, Verrina E, Jager KJ (2013) Disparities in policies, practices and rates of pediatric kidney transplantation in Europe. Am J Transplant 13:2066–2074CrossRefPubMed

16.

Harambat J, van Stralen KJ, Verrina E, Groothoff JW, Schaefer F, Jager KJ, ESPN/ERA–EDTA Registry (2014) Likelihood of children with end-stage kidney disease in Europe to live with a functioning kidney transplant is mainly explained by nonmedical factors. Pediatr Nephrol 29:453–459

17.

Kramer AM, van Stralen KJ, Jager KJ, Schaefer F, Verrina E, Seeman T, Lewis MA, Boehm M, Simonetti GD, Novljan G, Groothoff JW (2011) Demographics of blood pressure and hypertension in children on renal replacement therapy in Europe. Kidney Int 80:1092–1098CrossRefPubMed

18.

Halbach SM, Martz K, Mattoo T, Flynn J (2012) Predictors of blood pressure and its control in pediatric patients receiving dialysis. J Pediatr 160:621–625CrossRefPubMed

19.

Bonthuis M, van Stralen KJ, Jager KJ, Baiko S, Jahnukainen T, Laube GF, Podracka L, Seeman T, Tyerman K, Ulinski T, Groothoff JW, Schaefer F, Verrina E (2014) Dyslipidaemia in children on renal replacement therapy. Nephrol Dial Transplant 29:594–603CrossRefPubMed

20.

Amaral S, Hwang W, Fivush B, Neu A, Frankenfield D, Furth S (2006) Association of mortality and hospitalization with achievement of adult hemoglobin targets in adolescents maintained on hemodialysis. J Am Soc Nephrol 17:2878–2885CrossRefPubMed

21.

Gerson A, Hwang W, Fiorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth S (2004) Anemia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 44:1017–1023CrossRefPubMed

22.

van Stralen KJ, Krischock L, Schaefer F, Verrina E, Groothoff JW, Evans J, Heaf J, Ivanov D, Kostic M, Maringhini S, Podracka L, Printza N, Pundziene B, Reusz GS, Vondrak K, Jager KJ, Tizard EJ, ESPN/ERA–EDTA Registry (2012) Prevalence and predictors of the sub-target Hb level in children on dialysis. Nephrol Dial Transplant 27:3950–3957

23.

Krischock L, van Stralen KJ, Verrina E, Tizard EJ, Bonthuis M, Reusz G, Hussain FK, Jankauskiene A, Novljan G, Spasojević-Dimitrijeva B, Podracka L, Zaller V, Jager KJ, Schaefer F, ESPN/ERA–EDTA Registry (2015) Anemia in children following renal transplantation—results from the ESPN/ERA–EDTA registry. Pediatr Nephrol. doi:10.1007/s00467-015-3201-8

24.

Bonthuis M, van Stralen KJ, Verrina E, Edefonti A, Molchanova EA, Hokken-Koelega AC, Schaefer F, Jager KJ (2012) Use of national and international growth charts for studying height in European children: development of up-to-date European height-for-age charts. PLoS One 7, e42506CrossRefPubMedPubMedCentral

25.

Harambat J, Bonthuis M, van Stralen KJ, Ariceta G, Battelino N, Bjerre A, Jahnukainen T, Leroy V, Reusz G, Sandes AR, Sinha MD, Groothoff JW, Combe C, Jager KJ, Verrina E, Schaefer F, ESPN/ERA–EDTA Registry (2014) Adult height in patients with advanced CKD requiring renal replacement therapy during childhood. Clin J Am Soc Nephrol 9:92–99

26.

van Huis M, Bonthuis M, Sahpazova E, Mencarelli F, Spasojević B, Reusz G, Caldas-Afonso A, Bjerre A, Baiko S, Vondrak K, Molchanova EA, Kolvek G, Zaikova N, Böhm M, Ariceta G, Jager KJ, Schaefer F, van Stralen KJ, Groothoff JW (2015) Considerable variations in growth hormone policy and prescription in paediatric end-stage renal disease across European countries—a report from the ESPN/ERA–EDTA registry. Nephrol Dial Transplant. doi:10.1093/ndt/gfv105

27.

Bonthuis M, van Stralen KJ, Verrina E, Groothoff JW, Alonso Melgar Á, Edefonti A, Fischbach M, Mendes P, Molchanova EA, Paripović D, Peco-Antic A, Printza N, Rees L, Rubik J, Stefanidis CJ, Sinha MD, Zagożdżon I, Jager KJ, Schaefer F (2013) Underweight, overweight and obesity in paediatric dialysis and renal transplant patients. Nephrol Dial Transplant 28 Suppl 4:iv195–iv204

28.

Samuel SM, Tonelli M, Foster BJ, Alexander RT, Nettel-Aguirre A, Soo A, Hemmelgarn BR, Pediatric Renal Outcomes Canada Group (2011) Survival in pediatric dialysis and transplant patients. Clin J Am Soc Nephrol 6:1094–1099CrossRefPubMedPubMedCentral

29.

McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662CrossRefPubMed

30.

van Stralen KJ, Borzych-Dużalka D, Hataya H, Kennedy SE, Jager KJ, Verrina E, Inward C, Rönnholm K, Vondrak K, Warady BA, Zurowska AM, Schaefer F, Cochat P, ESPN/ERA–EDTA registry, IPPN registry, ANZDATA Registry, Japanese RRT Registry (2014) Survival and clinical outcomes of children starting renal replacement therapy in the neonatal period. Kidney Int 86:168–174

31.

Rees L (2014) The dilemmas surrounding the decision to start chronic dialysis in the neonate. Kidney Int 86:18–20CrossRefPubMed

32.

Cochat P, Fargue S, Mestrallet G, Jungraithmayr T, Koch-Nogueira P, Ranchin B, Zimmerhackl LB (2009) Disease recurrence in paediatric renal transplantation. Pediatr Nephrol 24:2097–2108CrossRefPubMedPubMedCentral

33.

Van Stralen KJ, Verrina E, Belingheri M, Dudley J, Dusek J, Grenda R, Macher MA, Puretic Z, Rubic J, Rudaitis S, Rudin C, Schaefer F, Jager KJ, ESPN/ERA–EDTA Registry (2013) Impact of graft loss among kidney diseases with a high risk of post-transplant recurrence in the paediatric population. Nephrol Dial Transplant 28:1031–1038

34.

Bonthuis M, Busutti M, van Stralen KJ, Jager KJ, Baiko S, Bakkaloğlu S, Battelino N, Gaydarova M, Gianoglio B, Parvex P, Gomes C, Heaf JG, Podracka L, Kuzmanovska D, Molchanova MS, Pankratenko TE, Papachristou F, Reusz G, Sanahuja MJ, Shroff R, Groothoff JW, Schaefer F, Verrina E (2015) Mineral metabolism in European children living with a renal transplant: a European Society for Paediatric Nephrology/European Renal Association–European Dialysis and Transplant Association Registry study. Clin J Am Soc Nephrol 10:767–775

35.

Greco M, Brugnara M, Zaffanello M, Taranta A, Pastore A, Emma F (2010) Long-term outcome of nephropathic cystinosis: a 20-year single-center experience. Pediatr Nephrol 25:2459–2467CrossRefPubMed

36.

van Stralen KJ, Emma F, Jager KJ, Verrina E, Schaefer F, Laube GF, Lewis MA, Levtchenko EN (2011) Improvement in the renal prognosis in nephropathic cystinosis. Clin J Am Soc Nephrol 6:2485–2491CrossRefPubMedPubMedCentral

37.

Wühl E, van Stralen KJ, Wanner C, Ariceta G, Heaf JG, Bjerre AK, Palsson R, Duneau G, Hoitsma AJ, Ravani P, Schaefer F, Jager KJ (2014) Renal replacement therapy for rare diseases affecting the kidney: an analysis of the ERA–EDTA Registry. Nephrol Dial Transplant 29 Suppl 4:iv1-8

38.

Harambat J, van Stralen KJ, Espinosa L, Groothoff JW, Hulton SA, Cerkauskiene R, Schaefer F, Verrina E, Jager KJ, Cochat P, European Society for Pediatric Nephrology/European Renal Association–European Dialysis and Transplant Association (ESPN/ERA–EDTA) Registry (2012) Characteristics and outcomes of children with primary oxalosis requiring renal replacement therapy. Clin J Am Soc Nephrol 7:458–465

39.

Wühl E, van Stralen KJ, Verrina E, Bjerre A, Wanner C, Heaf JG, Zurriaga O, Hoitsma A, Niaudet P, Palsson R, Ravani P, Jager KJ, Schaefer F (2013) Timing and outcome of renal replacement therapy in patients with congenital malformations of the kidney and urinary tract. Clin J Am Soc Nephrol 8:67–74CrossRefPubMed

40.

Jager KJ, Zoccali C (2009) Comorbidity data collection by renal registries—a remaining challenge. Nephrol Dial Transplant 24:2311–2313CrossRefPubMed

41.

Jager KJ, Stel VS, Wanner C, Zoccali C, Dekker FW (2007) The valuable contribution of observational studies to nephrology. Kidney Int 72:671–675CrossRefPubMed

42.

Venkat-Raman G, Tomson CR, Gao Y, Cornet R, Stengel B, Gronhagen-Riska C, Reid C, Jacquelinet C, Schaeffner E, Boeschoten E, Casino F, Collart F, De Meester J, Zurriaga O, Kramar R, Jager KJ, Simpson K, Registry ERA-EDTA (2012) New primary renal diagnosis codes for the ERA–EDTA. Nephrol Dial Transplant 27:4414–4419

43.

van der Veer SN, van Biesen W, Couchoud C, Tomson CR, Jager KJ (2014) Measuring the quality of renal care: things to keep in mind when selecting and using quality indicators. Nephrol Dial Transplant 29:1460–1467CrossRefPubMed

Title: Lessons learned from the ESPN/ERA–EDTA Registry
Authors: Jérôme Harambat
Marjolein Bonthuis
Jaap W. Groothoff
Franz Schaefer
E. Jane Tizard
Enrico Verrina
Karlijn J. van Stralen
Kitty J. Jager
Publication date: 01-11-2016
Publisher: Springer Berlin Heidelberg
Published in: Pediatric Nephrology / Issue 11/2016
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI: https://doi.org/10.1007/s00467-015-3238-8

At a glance: The STEP trials

Springer Medicine

Lessons learned from the ESPN/ERA–EDTA Registry

Abstract

At a glance: The STEP trials

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 11/2016

Urinary system obstruction in a preterm infant: Answers

Mycophenolate mofetil in steroid-dependent idiopathic nephrotic syndrome

A young girl with an unusual cause of acute kidney injury: Answers

Good-quality research in rare diseases: trials and tribulations

Fluid overload and outcomes in neonates receiving continuous renal replacement therapy

Toxic environmental exposures and kidney health in children