The European Rare Kidney Disease Reference Network


Research Project

Project Title:

Management of children with congenital nephrotic syndrome

Project Type:


Disease group(s):

Hereditary glomerulopathies, Pediatric CKD & dialysis

Project Summary:

Management of children with congenital nephrotic syndrome (CNS) is challenging. Early bilateral nephrectomies followed by dialysis and transplantation is currently practised in most centres, but conservative treatment may also be effective.
We conducted a 6-year retrospective case-note review across members of the European Society for Paediatric Nephrology Dialysis Working Group to compare management strategies and their outcomes in children with CNS.

81 children across 17 tertiary nephrology units in Europe are included (NPHS1 n=57; NPHS2 n=2, WT1 n=10, others n=12). Analysis is ongoing

Lead principal investigator(s):

Rukshana Shroff, London


Gema Ariceta, Barcelona
Aleksandra Zurowska, Gdansk
Claus Peter Schmitt, Heidelberg
Justine Bacchetta, Lyon
Fabio Paglialonga, Milano
Augustina Jankauskiene, Vilnius
Holtta Tuula, Helsinki

Project Period:

01/2015   -   12/2018


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