Studies in health technology and informatics · 2023
The Importance of Being FAIR and FAST - The Clinical Epidemiology and Study Platform of the German Network University Medicine (NUKLEUS).
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Krefting Dagmar, Anton Gabi, Chaplinskaya-Sobol Irina, Hanss Sabine, Hoffmann Wolfgang, Hopff Sina M, Kraus Monika, Lorbeer Roberto, Lorenz-Depiereux Bettina, Illig Thomas, Schäfer Christian, Schaller Jens, Stahl Dana, Valentin Heike, Heuschmann Peter, Vehreschild Janne
Аннотация
The COVID-19 pandemic has urged the need to set up, conduct and analyze high-quality epidemiological studies within a very short time-scale to provide timely evidence on influential factors on the pandemic, e.g. COVID-19 severity and disease course. The comprehensive research infrastructure developed to run the German National Pandemic Cohort Network within the Network University Medicine is now maintained within a generic clinical epidemiology and study platform NUKLEUS. It is operated and subsequently extended to allow efficient joint planning, execution and evaluation of clinical and clinical-epidemiological studies. We aim to provide high-quality biomedical data and biospecimens and make its results widely available to the scientific community by implementing findability, accessibility, interoperability and reusability - i.e. following the FAIR guiding principles. Thus, NUKLEUS might serve as role model for FAIR and fast implementation of clinical epidemiological studies within the setting of University Medical Centers and beyond.