Research Project

Project Title:	EUROCYS Registry
Project Type:	Registry
Disease group(s):	Metabolic & stone disorders
Project Summary:	The objective of EUROCYS registry is to collect consistent and comparative prospective clinical, biological, genetic and radiological data from patients (children and adults) with cystinuria and followed in European centers. EUROCYS is a multidisciplinary, European, multicenter and prospective cohort of patients with cystinuria. It includes demographic, clinical, surgical, biological, genetic, radiological and therapeutic data. These data will be recorded via ERKReg Core Registry. All Patient data are kept in the secure patient-system environment of the center where the data is collected and are handled anonymously and confidentially in ERKNet registry according to the European general data protection regulation. In each center, the data are coded with a unique patient code.
Lead principal investigator(s):	Marie Courbebaisse, Paris Aude Servais, Paris Bertrand Knebelmann, Paris
Co-investigator(s):	Aurelia Bertholet-Thomas, Lyon Elena Levtchenko, Amsterdam Maria Van Dyck, Leuven Francesco Emma, Rome Gema Ariceta, Barcelona Jan Halbritter, Berlin John Sayer, Newcastle Kay Thomas, London Sandrine Lemoine, Lyon Soumeya Bekri, Rouen
Project Period:	01/2022 - 12/2060
Sponsors:	National funding agency