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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
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 coll...
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer Berlin Heidelberg
2023
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10293401/ https://www.ncbi.nlm.nih.gov/pubmed/36884078 http://dx.doi.org/10.1007/s00392-023-02177-5 |
| _version_ | 1785062993766121472 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Hoffmann, Julia |
| collection | PubMed |
| description | 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. |
| format | Online Article Text |
| id | pubmed-10293401 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2023 |
| publisher | Springer Berlin Heidelberg |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-102934012023-06-28 The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies 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 Clin Res Cardiol Original Paper 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. Springer Berlin Heidelberg 2023-03-08 2023 /pmc/articles/PMC10293401/ /pubmed/36884078 http://dx.doi.org/10.1007/s00392-023-02177-5 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
| spellingShingle | Original Paper 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 The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title | The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title_full | The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title_fullStr | The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title_full_unstemmed | The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title_short | The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| title_sort | dzhk research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies |
| topic | Original Paper |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10293401/ https://www.ncbi.nlm.nih.gov/pubmed/36884078 http://dx.doi.org/10.1007/s00392-023-02177-5 |
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