The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies
Authors: Hoffmann Julia , Hanß Sabine , Kraus Monika , Schaller Jens , Schäfer Christian , Stahl Dana , Anker Stefan D. , Anton Gabriele , Bahls Thomas , Blankenberg Stefan , Blumentritt Arne , Boldt Leif-Hendrik , Cordes Steffen , Desch Steffen , Doehner Wolfram , Dörr Marcus , Edelmann Frank , Eitel Ingo , Endres Matthias , Engelhardt Stefan , Erdmann Jeanette , Eulenburg Katharina , Falk Volkmar , Felix Stephan B. , Frank Derk , Franke Thomas , Frey Norbert , Friede Tim , Geidel Lars , Germans Lisa , Grabmaier Ulrich , Halle Martin , Hausleiter Jörg , Jakobi Vera , Jebran Ahmad-Fawad , Jobs Alexander , Kääb Stefan , Karakas Mahir , Katus Hugo A. , Klatt Alexandra , Knosalla Christoph , Krebser Joachim , Landmesser Ulf , Lee Mahsa , Lehnert Kristin , Lesser Stephanie , Leyh Katrin , Lorbeer Roberto , Mach-Kolb Stephanie , Meder Benjamin , Nagel Eike , Nolte Christian H. , Parwani Abdul S. , Petersmann Astrid , Puls Miriam , Rau Henriette , Reiser Maximilian , Rienhoff Otto , Scharfe Tabea , Schattschneider Mario , Scheel Heiko , Schnabel Renate B. , Schuster Andreas , Schmitt Boris , Seidler Tim , Seiffert Moritz , Stähli Barbara-Elisabeth , Stas Adriane , J. Stocker Thomas , von Stülpnagel Lukas , Thiele Holger , Wachter Rolf , Wakili Reza , Weis Tanja , Weitmann Kerstin , Wichmann Heinz-Erich , Wild Philipp , Zeller Tanja , Hoffmann Wolfgang , Zeisberg Elisabeth Maria , Zimmermann Wolfram-Hubertus , Krefting Dagmar , Kühne Titus , Peters Annette , Hasenfuß Gerd , Massberg Steffen , Sommer Thomas , Dimmeler Stefanie , Eschenhagen Thomas , Nauck Matthias 
Published: March 2023

AbstractThe 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.