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The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies

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Item Type:Article
Title:The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies
Creators Name:Hoffmann, J. and Hanß, S. and Kraus, M. and Schaller, J. and Schäfer, C. and Stahl, D. and Anker, S.D. and Anton, G. and Bahls, T. and Blankenberg, S. and Blumentritt, A. and Boldt, L.H. and Cordes, S. and Desch, S. and Doehner, W. and Dörr, M. and Edelmann, F. and Eitel, I. and Endres, M. and Engelhardt, S. and Erdmann, J. and Eulenburg, K. and Falk, V. and Felix, S.B. and Frank, D. and Franke, T. and Frey, N. and Friede, T. and Geidel, L. and Germans, L. and Grabmaier, U. and Halle, M. and Hausleiter, J. and Jakobi, V. and Jebran, A.F. and Jobs, A. and Kääb, S. and Karakas, M. and Katus, H.A. and Klatt, A. and Knosalla, C. and Krebser, J. and Landmesser, U. and Lee, M. and Lehnert, K. and Lesser, S. and Leyh, K. and Lorbeer, R. and Mach-Kolb, S. and Meder, B. and Nagel, E. and Nolte, C.H. and Parwani, A.S. and Petersmann, A. and Puls, M. and Rau, H. and Reiser, M. and Rienhoff, O. and Scharfe, T. and Schattschneider, M. and Scheel, H. and Schnabel, R.B. and Schuster, A. and Schmitt, B. and Seidler, T. and Seiffert, M. and Stähli, B.E. and Stas, A. and Stocker, T.J. and von Stülpnagel, L. and Thiele, H. and Wachter, R. and Wakili, R. and Weis, T. and Weitmann, K. and Wichmann, H.E. and Wild, P. and Zeller, T. and Hoffmann, W. and Zeisberg, E.M. and Zimmermann, W.H. and Krefting, D. and Kühne, T. and Peters, A. and Hasenfuß, G. and Massberg, S. and Sommer, T. and Dimmeler, S. and Eschenhagen, T. and Nauck, M.
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.
Keywords:Cardiovascular Disease, Data and Biomaterial Collection, German Centre for Cardiovascular Research, Research Platform, Standardisation
Source:Clinical Research in Cardiology
Page Range:923-941
Date:July 2023
Official Publication:https://doi.org/10.1007/s00392-023-02177-5
PubMed:View item in PubMed

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