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Press releases

The world’s largest patient registry on heart muscle disease has enrolled its 1,000th patient

Das Heidelberger TORCH-Team (v.l.): PD Dr. Claudia Seyler, Dr. Benjamin Meder, Prof. Hugo A. Katus, PD Dr. Andreas Dösch, Dijana Wilhelm, Annette Buttler (Foto: Hendrik Schröder, Medienzentrum Heidelberg)

Das Greifswalder TORCH-Team (v.l.): Thea Schwaneberg, Dr. Kerstin Weitmann, Prof. Wolfgang Hoffmann (Foto: Stefan Dinse, Institut für Community Medicine Greifswald)

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Heidelberg/Greifswald/Berlin, 21 July 2016. The world’s largest patient registry on heart muscle disease, TORCH (TranslatiOnal Registry for CardiomyopatHies), has enrolled its 1,000th patient. “In just one-and-a-half years, we have almost reached the halfway mark in our project with the enrollment from the German Heart Center Berlin of the 1,000th patient in our registry,” says Dr. Andreas Dösch from Heidelberg University Hospital. “The data are checked regularly for completeness and quality and meet international standards,” adds Professor Wolfgang Hoffmann from Greifswald University Hospital.

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The collected data form the basis for large-scale studies on the diagnosis and treatment of non-ischaemic cardiomyopathies. The registry is financed by the German Centre for Cardiovascular Research (DZHK), which is funded by the German Federal Ministry of Education and Research, and recruitment has been ongoing since the end of 2014. “The project exemplifies how outstandingly well the structures within the DZHK are functioning,” says Professor Thomas Eschenhagen, spokesperson for the board of the DZHK.

The term cardiomyopathies refers to various diseases of the heart muscle. What they all have in common is an insufficient pumping performance of the heart, and this has consequences for the entire organism. Roughly two million people in Germany suffer from heart muscle disease. The disease can progress rapidly and require a heart transplant or, treated with medication, it can remain stable over a long period. But there is still a great need for research, especially in the area of non-ischaemic cardiomyopathies.

The TORCH patient registry is supposed to provide the foundation for this research. This multi-centric patient registry was started at Heidelberg University Hospital at the end of 2014 

– a project that is globally unique. “By 2017, we aim to have collected data and biosamples from 2,300 patients in Germany. This volume offers significant potential not only for investigating the underlying diseases, but also of course for developing new treatment options as well as new possibilities for diagnosis and prevention,” says Dösch. The data and biosamples come from 19 study centres located throughout Germany. In addition to partner institutions at seven DZHK sites, external centres are also supplying data and biosamples. The study coordination office for the registry consists of the clinical sciences project centre in Heidelberg and the data and quality assurance centre at the Institute for Community Medicine at Greifswald University Hospital, thus combining within the DZHK clinical expertise in the provision of medical care with long-standing experience in the area of data management. 

The first proposals for tackling concrete research questions with the collected data and biosamples have already been submitted. “Before the data can be issued for research purposes and for subsequent translation of research findings into clinical practice, it is essential to assure the quality of the data,” says Hoffmann. 

“This goes to show that we are not just collecting data and samples in order to fill biobanks, but that concrete projects are being realized, the results of which will help patients in the medium term,” explains Dr. Claudia Seyler from Heidelberg University Hospital. According to the TORCH team, this is motivation enough to develop TORCH further and, in the long term, to include other clinical pictures in the register.

Study: Translational registry for cardiomyopathies TORCH-DZHK1

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