The Dystonia Registry is a project that emerged from the DysTract Research Consortium on the Pathogenesis and Therapy of Dystonia led by Prof. Volkmann (Würzburg) and Prof. Klein (Lübeck), funded by the BMBF (Federal Ministry of Education and Research) from 2016-2019.

Following the funding, the project could be continued under the direction of Prof. Klein and Prof. Bäumer at the University of Lübeck. The work of the register is financed by own and third-party funds (Botulinum Toxin Working Group of the DGN, Merz Therapeuticals, Ipsen, Allergan).

The dystonia register collects comprehensive data on clinical characteristics of dystonia, course and treatment at several university and non-university centres. Within the last few years, >2,300 patients have been included in the register throughout Germany. The register is supplemented by a biobank and a genetic characterisation of all participants by Prof. Lohmann and her team at the Institute of Neurogenetics.

The register includes information on the following:

•     Prevalence and severity of the different subtypes of dystonia.
•     Detailed neurological examination of a subset of patients
•     Information on family background
•     Genetic characterisation by chip genotyping, gene panel examination and exome sequencing
•     Biomaterial: DNA, serum samples, fibroblasts and iPSCs
•     Therapy data: oral medication, botulinum toxin (including use and dosage of different preparations), deep brain stimulation
•     Self-assessment of disease burden, depression, anxiety and quality of life by patients.

Participating centres:

•     UKW Würzburg
•     UKSH Lübeck
•     Charité Berlin
•     University of Hanover
•     Music, Drama and Media
•     UKSH Kiel
•     University Hospital Tübingen
•     University Hospital Rostock
•     UKE Hamburg
•     HHU Düsseldorf
•     MHH Hanover
•     Department of Neurology and Department of Neurosurgery
•     Neurological Practice Neusäß/Rieth

The Dystonia Registry provides a unique resource of clinical data and biomaterials for current and future research and clinical trials, open to researchers worldwide for scientific collaborations.

More centres are welcome to join the registry. We will be happy to inform them about the registry and the opportunities for participation.

If you are a data subject and are interested in participating in the registry, please contact us as well.

Contact us:
Dystract(at)neuro.uni-luebeck.de