NMDR2 – Further Development and Establishment of the National Metadata Repository

Clinical research is increasingly dependent on consistently defined characteristics — for example, when reusing clinical care data in studies, merging study data in multicenter trials, or even conducting meta-studies. Internationally, there are significant efforts to establish so-called metadata repositories (MDRs) or official registries to uniformly name, define, and annotate relevant data elements (such as blood pressure), typically using codes from standardized vocabularies. Based on this, software services for semantic data integration can be provided.

This challenge has also been recognized by the Technology, Methods, and Infrastructure for Networked Medical Research (TMF), which has previously supported preparatory work on this topic. The strategic goal of this DFG-funded project is to establish a collaborative, quality-assured, neutral, permanent, open, and accessible metadata registry for clinical and epidemiological research in Germany. These characteristics are the result of a requirements analysis conducted as part of the TMF project "Community Evaluation MDR."

The planned initiative will benefit all clinical researchers who are planning investigator-initiated studies, registries, or cohorts and aim to collect high-quality data. At the same time, these needs are not currently addressed by any existing system.

Project funding

The collaborative project was funded from 2019 to 2024 by the German Research Foundation (DFG), with project partners at the University of Göttingen and the University of Leipzig.