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Author

Holger Storf

2 papers indexed here

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Open access Oct 2026

A Web-Based Registry Framework Linking Transfusion Practice to Long-Term Patient Outcomes: Design and Single-Center Feasibility Study

Blood transfusions are among the most common medical interventions performed worldwide. Several comprehensive databases link transfusions to routinely collected health data but do not include the indication and the decision-making basis for a particular administration, nor patient-reported long-term outcomes. We develo...

Elina Nürenberg-Goloub, B. Friedrichson, Michael Nordine et al. · 0 citations
Dataset Open access Sep 2026

Strengthening Rare Disease Data Readiness: a semantic approach to cross-registry interoperability

Rare diseases affect an estimated 446 million people worldwide, yet reliable epidemiological data are scarce due to insufficient data sources and lack of standardization. The German National Registry for Rare Diseases (NARSE) aims to establish a comprehensive epidemiological data basis and enable data availability for...

Clemens M. Hentrich, J. Vasseur, Ines Reinecke et al. · 0 citations

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