Data and samples from clinical studies are usually used only once to answer the scientific question of the study. After that, they disappear into archives and freezers, never to be seen again. Clinical trials are costly, and this approach is anything but sustainable.
"We were able to bring everyone to the table"
"The founding of the DZHK in 2012 provided a unique opportunity to put clinical cardiovascular research in Germany on a cooperative footing and make it more sustainable," says Thomas Eschenhagen, spokesman for the DZHK board from 2012 to 2020. The Clinical Research Platform created an overarching structure of IT systems, standard operating procedures (SOPs), decentralized biobanks, and a trust center into which all DZHK studies feed their data web-based.
Matthias Nauck, the spokesperson for the research platform, recalls the early days: "The DZHK had all the experts you needed, and we were able to bring them to the table." That way, he says, it was possible to take into account the needs of researchers and the requirements of ethics and data protection right from the start. He says that agreeing on standards has sometimes been challenging; individual habits are firmly embedded in clinicians' minds.
Largest cardiovascular study network in Germany
Meanwhile, 27 DZHK cardiovascular studies have fed medical history data, image data, and biospecimens from about 12,000 patients into the platform. In addition to the 17 DZHK clinical member institutions, about 80 other national institutions and almost 35 European partners contribute data and samples. "This makes us the largest cardiovascular study network in Germany," says Julia Hoffmann, head of the research platform at the DZHK office.
Called the "DZHK Heart Bank," the DZHK collection also includes an OMICs resource and tissue samples. Meanwhile, 50 research groups worldwide have requested the data and specimens for use, and some projects are nearing completion. A Use and Access Committee ensures that the most scientifically relevant questions come to fruition.
The DZHK's clinical research platform has proven to be a success story in difficult times: During the Corona pandemic, the BMBF-funded Network University Medicine (NUM) chose the DZHK platform to collect data from COVID-19 patients from all German university hospitals. In the meantime, the NUM operates its platform modeled on the DZHK.
The clinical research platform of the DZHK includes:
- Ethics Coordination: Prof. Annette Peters and Dr. Monika Kraus (both Helmholtz Munich)
- Trusteeship: Prof. Wolfgang Hoffmann and Dana Stahl (both Greifswald University Hospital)
- Transfer Office: Prof. Dagmar Krefting and Sabine Hanß (both University Medical Center Göttingen)
- Data management: Prof. Dagmar Krefting and Sabine Hanß (both University Medical Center Göttingen)
- Laboratory Information System (LIMS)-operator/Biospecimens: Prof. Matthias Nauck and Christian Schäfer (both Greifswald University Hospital)
- Image Data Management System (BDMS): Prof. Titus Kühne (Deutsches Herzzentrum der Charité, DHZC , Jens Schaller (Deutsches Herzzentrum der Charité, DHZC), Prof. Stefan Kääb (Klinikum der Universität München/Klinikum Großhadern), Dr Roberto Lorbeer (Klinikum der Universität München)
- Overall coordination by DZHK head office: Dr Julia Hoffmann
Publication: Hoffmann, J., Hanß, S., Kraus, M. et al. The DZHK research platform: maximisation of scientific value by enabling access to health data and biological samples collected in cardiovascular clinical studies. Clin Res Cardiol (2023). https://doi.org/10.1007/s00392-023-02177-5
Scientific contact: Dr. Julia Hoffmann, Head of Research Platform, German Centre for Cardiovascular Research (DZHK), Tel.: 030 3465 529 17, julia.hoffmann(at)dzhk.de
Contact: Christine Vollgraf, Press and Public Relations, German Center for Cardiovascular Research (DZHK), +49 30 3465 529 02, presse(at)dzhk.de
