R-LIVER Registry
R-LIVER is a prospective multicenter registry of ERN RARE-LIVER, established in 2018 for paediatric and adult patients with rare liver diseases. It currently focuses on Autoimmune liver disease (AIH, PSC, PBC); Metabolic, Biliary Atresia and related disease; structural and vascular liver diseases. R-LIVER is in continuous expansion and more diseases will be included in the database in the future.
The main objective of the registry is to monitor differences and outcome of care, to contribute to the advancement of scientific knowledge and to facilitate research in the field of rare liver diseases. R-LIVER is registered in the European Rare Disease Registry Infrastructure (ERDRI) platform, which makes its data visible and accessible.
There are 42 centres in the meantime contributing data to the registry and we aim to continuously include and involve more centres within and outside the EU.
Data Access Committee (DAC)
DAC is a committee of members who will be in charge of viewing and deciding on requests to use R-LIVER data. The overall aim of the DAC is to provide a coordinated access to registry data that complies with the ERN RARE-LIVER goals, and to promote the research use of the data that are being collected in the R-LIVER registry through a transparent approach ensuring the long-term sustainability of the project.
The Data Access Committee comprises the registry coordinator, one adult and one paediatric hepatologists from each expert disease-working group represented in the registry (AIH, PBC, PSC, BA, and VLD). Two patient representatives, one data manager and R-LIVER project manager.
Downloadable Documents:
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