(R-Liver) Registry for Rare Liver Diseases

ended

R-LIVER will build on the registry infrastructure already developed by UKE the coordinating institution for ERN RARE LIVER to provide a European central registry for rare liver diseases. The registry will incorporate high quality and prospectively acquired data from patients with rare liver diseases in order to measure and finally improve the quality of care. In addition, R-LIVER aims to incorporate existing registries for specific rare diseases, thus providing a sustainable, interoperable and centrally managed database of critical mass for rare liver diseases. R-LIVER has already been registered on the ERDRI platform and metadata will be provided within this project to guarantee interoperability with other ERN registries. The structure of R-LIVER will comply with the FAIR data principles to make data findable, accessible, interoperable and reusable. R-LIVER will incorporate existing rare liver disease registries making them ERDRI compliant. Furthermore, new capabilities so to advance the operability of R-LIVER to communicate with patients in order to spread knowledge and import patient reported outcome data into the registry will be developed. Two methods for including data from external registries will be included. For large volume specific disease registries, the objective will be to import all data from the registry and R-LIVER to become the sole registry. For smaller registries that aim will be to import the central quality of care data. All of these measures will assure that assessment and improvement of health-related quality of life remains central objective. R-LIVER will work with other ERN based registries to determine how data can be exchanged to ensure that there is continuity of care for individuals who may appear on more than one registry.