1. The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies
- Author
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Julia Hoffmann, Sabine Hanß, Monika Kraus, Jens Schaller, Christian Schäfer, Dana Stahl, Stefan D. Anker, Gabriele Anton, Thomas Bahls, Stefan Blankenberg, Arne Blumentritt, Leif-Hendrik Boldt, Steffen Cordes, Steffen Desch, Wolfram Doehner, Marcus Dörr, Frank Edelmann, Ingo Eitel, Matthias Endres, Stefan Engelhardt, Jeanette Erdmann, Katharina Eulenburg, Volkmar Falk, Stephan B. Felix, Derk Frank, Thomas Franke, Norbert Frey, Tim Friede, Lars Geidel, Lisa Germans, Ulrich Grabmaier, Martin Halle, Jörg Hausleiter, Vera Jakobi, Ahmad-Fawad Jebran, Alexander Jobs, Stefan Kääb, Mahir Karakas, Hugo A. Katus, Alexandra Klatt, Christoph Knosalla, Joachim Krebser, Ulf Landmesser, Mahsa Lee, Kristin Lehnert, Stephanie Lesser, Katrin Leyh, Roberto Lorbeer, Stephanie Mach-Kolb, Benjamin Meder, Eike Nagel, Christian H. Nolte, Abdul S. Parwani, Astrid Petersmann, Miriam Puls, Henriette Rau, Maximilian Reiser, Otto Rienhoff, Tabea Scharfe, Mario Schattschneider, Heiko Scheel, Renate B. Schnabel, Andreas Schuster, Boris Schmitt, Tim Seidler, Moritz Seiffert, Barbara-Elisabeth Stähli, Adriane Stas, Thomas J. Stocker, Lukas von Stülpnagel, Holger Thiele, Rolf Wachter, Reza Wakili, Tanja Weis, Kerstin Weitmann, Heinz-Erich Wichmann, Philipp Wild, Tanja Zeller, Wolfgang Hoffmann, Elisabeth Maria Zeisberg, Wolfram-Hubertus Zimmermann, Dagmar Krefting, Titus Kühne, Annette Peters, Gerd Hasenfuß, Steffen Massberg, Thomas Sommer, Stefanie Dimmeler, Thomas Eschenhagen, and Matthias Nauck
- Subjects
Cancer Research ,Data and biomaterial collection ,Research platform ,ddc:610 ,Standardisation ,General Medicine ,Cardiovascular disease ,Cardiology and Cardiovascular Medicine ,German Centre for Cardiovascular Research - Abstract
The German Centre for Cardiovascular Research (DZHK) is one of the German Centres for Health Research and aims to conduct early and guideline-relevant studies to develop new therapies and diagnostics that impact the lives of people with cardiovascular disease. Therefore, DZHK members designed a collaboratively organised and integrated research platform connecting all sites and partners. The overarching objectives of the research platform are the standardisation of prospective data and biological sample collections among all studies and the development of a sustainable centrally standardised storage in compliance with general legal regulations and the FAIR principles. The main elements of the DZHK infrastructure are web-based and central units for data management, LIMS, IDMS, and transfer office, embedded in a framework consisting of the DZHK Use and Access Policy, and the Ethics and Data Protection Concept. This framework is characterised by a modular design allowing a high standardisation across all studies. For studies that require even tighter criteria additional quality levels are defined. In addition, the Public Open Data strategy is an important focus of DZHK. The DZHK operates as one legal entity holding all rights of data and biological sample usage, according to the DZHK Use and Access Policy. All DZHK studies collect a basic set of data and biosamples, accompanied by specific clinical and imaging data and biobanking. The DZHK infrastructure was constructed by scientists with the focus on the needs of scientists conducting clinical studies. Through this, the DZHK enables the interdisciplinary and multiple use of data and biological samples by scientists inside and outside the DZHK. So far, 27 DZHK studies recruited well over 11,200 participants suffering from major cardiovascular disorders such as myocardial infarction or heart failure. Currently, data and samples of five DZHK studies of the DZHK Heart Bank can be applied for.
- Published
- 2023