Operator
This registry is operated by the Friedrich-Baur-Institut of University of Munich hospital.
Head of the DM registry (international and Germany)
Prof. Dr. med. Benedikt Schoser
Benedikt Schoser is Associated Professor of Neurology at the Ludwig-Maximilians-University of Munich. He is working at the Friedrich-Baur-Institute, the neuromuscular department of the LMU, in leading position. His main research interests are neuromuscular diseases, primarily myotonic, and muscular dystrophies, and inflammatory myopathies and clinical trials in neuromuscular patients. He chaired the 7th International myotonic dystrophy conference (IDMC-7) in 2009. He is head of the diagnostic section of the German Muscular Dystrophy Network (MD-NET), funded by the Federal Ministry of Education and Research (BMBF), and member of TREAT-NMD. He is speaker of the Southern Bavarian Muscles Society and member of the Scientific Advisory Board of the Muscular Dystrophy Association of Germany (DGM), and ad hoc reviewer for several peer-reviewed journals.
Medical contact person of the DM registry
Dr. med. Federica Montagnese
Federica Montagnese is currently working as resident MD at the Friedrich-Baur-Institute, the Neuromuscular Department of the Ludwig-Maximilians-Universtity of Munich, where she specializes in the field of neurology and neuromuscular diseases. Her research interest focuses on inherited neuromuscular disorders and clinical trials in order to improve diagnosis, health care and therapeutic options in patients with neuromuscular diseases. Within the European Network TREAT-NMD and the German Network MD-NET she is concerned with the patient registry for Myotonic Dystrophies.
Medical contact person and curator of the DM registry
Simone Thiele
Simone Thiele is a member of the European Network TREAT-NMD as well as the German Network MD-NET and Curator of the DM registry. Besides, she is involved with the patient registries for FKRPopathies, Duchenne Muscular Dystrophy and Spinal Muscular Atrophy which are organised by the Friedrich-Baur-Institute in Munich. Her other focus lies on the coordination of clinical trials.
IT
Marcel Heidemann
Marcel Heidemann is the software engineer for this and the other patient registries for rare neuromuscular diseases which are organised by the Friedrich-Baur-Institute in Munich. Please contact him if you have any technical questions or interest in this software.