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

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 clinical research, expl...

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Hauptverfasser: Bassanese, Giulia (VerfasserIn) , Wlodkowski, Tanja (VerfasserIn) , Servais, Aude (VerfasserIn) , Heidet, Laurence (VerfasserIn) , Roccatello, Dario (VerfasserIn) , Emma, Francesco (VerfasserIn) , Levtchenko, Elena (VerfasserIn) , Ariceta, Gema (VerfasserIn) , Bacchetta, Justine (VerfasserIn) , Capasso, Giovambattista (VerfasserIn) , Jankauskiene, Augustina (VerfasserIn) , Miglinas, Marius (VerfasserIn) , Ferraro, Pietro Manuel (VerfasserIn) , Montini, Giovanni (VerfasserIn) , Oh, Jun (VerfasserIn) , Decramer, Stephane (VerfasserIn) , Levart, Tanja Kersnik (VerfasserIn) , Wetzels, Jack (VerfasserIn) , Cornelissen, Elisabeth (VerfasserIn) , Devuyst, Olivier (VerfasserIn) , Zurowska, Aleksandra (VerfasserIn) , Pape, Lars (VerfasserIn) , Buescher, Anja (VerfasserIn) , Haffner, Dieter (VerfasserIn) , Marcun Varda, Natasa (VerfasserIn) , Ghiggeri, Gian Marco (VerfasserIn) , Remuzzi, Giuseppe (VerfasserIn) , Konrad, Martin (VerfasserIn) , Longo, Germana (VerfasserIn) , Bockenhauer, Detlef (VerfasserIn) , Awan, Atif (VerfasserIn) , Andersone, Ilze (VerfasserIn) , Groothoff, Jaap W. (VerfasserIn) , Schaefer, Franz (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: 02 June 2021
In: Orphanet journal of rare diseases
Year: 2021, Jahrgang: 16, Pages: 1-15
ISSN:1750-1172
DOI:10.1186/s13023-021-01872-8
Online-Zugang:Verlag, kostenfrei, Volltext: https://doi.org/10.1186/s13023-021-01872-8
Verlag, kostenfrei, Volltext: https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01872-8
Volltext
Verfasserangaben: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 and Franz Schaefer
Beschreibung
Zusammenfassung: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 clinical research, explore diagnostic and therapeutic management practices, and monitor treatment performance and patient’s outcomes. The registry has a modular design that allows to integrate comprehensive disease-specific registries as extensions to the core database. The diagnosis (Orphacode) and diagnostic information (clinical, imaging, histopathological, biochemical, immunological and genetic) are recorded. Anthropometric, kidney function, and disease-specific management and outcome items informing a set of 61 key performance indicators (KPIs) are obtained annually. Data quality is ensured by automated plausibility checks upon data entry and regular offline database checks prompting queries. Centre KPI statistics and benchmarking are calculated automatically.
Beschreibung:Gesehen am 02.08.2021
Beschreibung:Online Resource
ISSN:1750-1172
DOI:10.1186/s13023-021-01872-8

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