The fruitful discussions in this meeting help us to improve the currently active R-Liver registries. We will incorporate the changes into the Castor system. Please note, that the registry can be used to identify patients and centers interested in specific substudies for which you may want to collect additional data, e.g. the treatment and details of osteoporosis in autoimmune hepatitis. For this purpose a data export can be generated to which additional more detailed data can be added outside of the R-Liver system.
Work is ongoing to incorporate the VALDIG registry and we will soon start with the biliary atresia registry. In addition, we decided to mirror the existing and successful multicenter polycystic liver disease registry and the choledochal cyst registry into the R-Liver system, so that all members and partners of ERN only have to sign one DTA in order to be able to participate in multiple registries.