NARSE goes OMOP: Mapping the dataset of the German National Registry for Rare Diseases to international standards

The National Registry for Rare Diseases (NARSE) is a patient registry for the consent-based collection of data from people affected by rare diseases in Germany. Its aim is to enhance patient discovery and streamline the access to information. To support the (re-)use of the data in international observational studies, it is required to transfer it to the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM). OMOP offers a well-defined data model and utilizes international standards to describe Real-World Data (RWD). The aim of this work is to prepare the NARSE dataset for international research by mapping it to OMOP.