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The European Rare Kidney Disease Registry (ERKReg): objectives, design and initial results

Abstract Background The European Rare Kidney Disease Reference Network (ERKNet) recently established ERKReg, a Web-based registry for all patients with rare kidney diseases. The main objectives of this core registry are to generate epidemiological information, identify current patient cohort for cli...

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Autori principali: Giulia Bassanese, Tanja Wlodkowski, Aude Servais, Laurence Heidet, Dario Roccatello, Francesco Emma, Elena Levtchenko, Gema Ariceta, Justine Bacchetta, Giovambattista Capasso, Augustina Jankauskiene, Marius Miglinas, Pietro Manuel Ferraro, Giovanni Montini, Jun Oh, Stephane Decramer, Tanja Kersnik Levart, Jack Wetzels, Elisabeth Cornelissen, Olivier Devuyst, Aleksandra Zurowska, Lars Pape, Anja Buescher, Dieter Haffner, Natasa Marcun Varda, Gian Marco Ghiggeri, Giuseppe Remuzzi, Martin Konrad, Germana Longo, Detlef Bockenhauer, Atif Awan, Ilze Andersone, Jaap W. Groothoff, Franz Schaefer
Natura: Artigo
Lingua:Inglês
Pubblicazione: BMC 2021-06-01
Serie:Orphanet Journal of Rare Diseases
Soggetti:
European Rare Kidney Disease Reference Network (ERKNet)
Registry
Epidemiology
Nephrology
Pediatric nephrology
Accesso online:https://doi.org/10.1186/s13023-021-01872-8
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