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

Zoch, Michele; Reinecke, Ines; Henek, Elisa; Peng, Yuan; Schepers, Josef; Hübner, Miriam Rebecca; Krause, Franziska; Storf, Holger; Göbel, Jens; Vasseur, Jessica; Sedlmayr, Martin

doi:10.5281/zenodo.13341025

Published September 9, 2024 | Version v1

Conference paper Open

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

1. Technische Universität Dresden
2. TU Dresden
3. Berlin Institute of Health at Charité - Universitätsmedizin Berlin
4. Eva Luise und Horst Köhler Stiftung für Menschen mit Seltenen Erkrankungen
5. Goethe University Frankfurt

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.

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