The Registry TORCH-DZHK1 initiated and funded by the German Centre for Cardiovascular Research (DZHK) contains medical and sociodemographic data and samples of patients with non-ischaemic cardiomyopathies, myocardial diseases that do not derive from a circulatory disorder of the heart, but are, for example, hereditary or inflammatory. Little is known about the pathogenesis or course of such cardiomyopathies. More research is needed in this area.
For three years, 20 sites across the whole of Germany were consistently able to recruit patients with this disease for voluntary participation. The ambitious goal was achieved by the end of 2017 and data analysis can now begin. The large number of participants and the high quality of the data makes comprehensive analyses and innovative research methods possible. TORCH-DZHK1 has thus created a valuable qualitative and quantitative foundation for innovative studies. Based on this, the use of the data and samples has already been approved for six research projects and studies. The results shall lead to new concepts in the diagnosis and therapy of cardiomyopathies.
The basic data and samples in the Registry will also be available to scientists who are not a part of the TORCH team or the DZHK. This open use of the data and samples will most likely be available through DZHK Use and Access Policy and the Central Data Management System of the DZHK, in which the data of all other DZHK studies is also available in addition to the TORCH data.
The DZHK and its member institutions have a good chance of becoming international leaders in cardiomyopathy research thanks to the Registry and the initiatives based on it. With TORCH-Plus, the scientists of the TORCH team have already applied at the DZHK for an increase in the number of patients and the study of new research questions. The decision of the external and internal reviewers is expected in the next few weeks.
Contacts and further information can be found online:
TranslatiOnal Registry for CardiomyopatHies – TORCH: