FAIR4Rare

In the FAIR4Rare project, the National Registry for Rare Diseases (NARSE) is being evaluated to determine whether it can close gaps in care. The focus is on cystic fibrosis, fragility diseases and genetic forms of obesity. In this context, the minimum data set, i.e. the absolutely necessary information about a disease case, is to be revised for the registry. The aim of the work is to ensure that patient data can be found more reliably in the digital registry and thus enable more people affected to participate in the progress in diagnostics and therapy of rare diseases.