Dystract – German Dystonia Register

The German Dystonia Register DysTract register was initiated as core project within the DysTract research consortium in 2016. It is a nationwide web-based dystonia patient register and biobank with the following contents:

  •  detailed clinical information about the characteristics of dystonia and treatment
  • a clinical investigation video based on a standardised protocol
  •  patient self-evaluation regarding quality of live
  • a genetic screening of known monogenic forms of dystonia
  • a biobank with various biomaterials connected to patient data

DysTract e.V. supports the work of the register, which is managed by professor Klein, institute for neurogenetic and professor Bäumer, at the University of Lübeck. The genetic screening is performed by professor Lohmann, institute for neurogenetics, Lübeck. Within the last two years, ten university hospitals have included more than 2000 patients throughout Germany in the register. The dystonia register offers a unique resource of clinical data and biomaterials for current and future research and clinical trials, being open to researchers worldwide for scientific collaboration.