About ARegPKD

ARegPKD addresses the major open scientific and clinical issues and aims to contribute to the fight against life-threatening disorders of early childhood.

Initiated by Max Liebau (Cologne) and Franz Schaefer (Heidelberg), ARegPKD is a multinational European ARPKD registry with involvement of EU-neighbouring countries. Within this project two renowned clinical research consortia in pediatric nephrology, i.e. the German Pediatric Nephrology Association (GPN) and the European Study Consortium for Chronic Kidney Disorders Affecting Pediatric Patients (ESCAPE Network), join forces with leading geneticists and pathologists to advance the pathophysiological understanding, provide an observational evidence base for unified clinical treatment concepts, establish clinical and biomarkers predicting the risk of early and progressive disease, lay the foundation for innovative translational research toward novel therapeutic targets, and pave the way for clinical trials for this disorder.

Via the participating centers mainly of the GPN and the ESCAPE Network we have starte to recruit patients suffering from ARPKD. ARegPKD aims to gather the largest collection of detailed longitudinal data on clinical ARPKD courses worldwide.

Inclusion and exclusion criteria have been defined (see "How to use ARegPKD"). The diagnosis of ARPKD relies on clinical, anamnestic, genetic and histological criteria. After informed consent patient data is pseudonymously introduced in a web-based database. Data protection is secured by use of SSL-connections and password restriction of the webpage. The clinical data is collected, analysed and statistical analysis are performed with the help of an experienced bioinformatician. Special interest is paid to the initial clinical presentation, pre- and perinatal history, hepatic and renal function and potential clinical overlap with other ciliopathies.

Importantly, ARegPKD forms a core component of the interdisciplinary NEOCYST consortium (Network for Early Onset Cystic Kidney Diseases) that receives funding from the German Ministry for Education and  Research.

If you would like to join the ARPKD registry ARegPKD, please fill in the registration form.

© ARegPKD 2012 - 2023