NARSE goes OMOP: Mapping the dataset of the German National Registry for Rare Diseases to international standards
Year: 2024
Type: conference-paper
Abstract: 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.
Authors: Zoch, Michele, Reinecke, Ines, Henek, Elisa, Peng, Yuan, Schepers, Josef, Hübner, Miriam Rebecca, Krause, Franziska, Storf, Holger, Göbel, Jens, Vasseur, Jessica, Sedlmayr, Martin
Language: English
Subfield: Health Information Management
Field: Health Professions
Domain: Health Sciences
Open Access status: green
Funder: Gemeinsame Bundesausschuss
Award: G459256456
OpenAlex ID: W6968057409
FWCI:
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