The MD-NET was established in 2003 as an interdisciplinary network bringing together experts from different areas to collaborate on muscular dystrophy research.

The MD-NET has achieved to set up two controlled clinical trials with a participation of 15 national and 2 international clinical centres; establish linkage analysis and mutation analysis for all known and some candidate loci responsible for muscular dystrophies; make considerable progress in molecular therapeutic approaches; and establish study groups and service structures for muscular dystrophies.

The MD-NET has established 5 service structures, which form the backbone of the network. Research into muscular dystrophies is coordinated and facilitated by the Muscle Tissue Culture Collection, the Centre for Microsatellite analysis, the Central facility for the sequencing of genes involved in muscular dystrophies, and the Coordination Centre for Clinical Trials. The MD-NET service structures are now well known beyond the national borders and the Muscle Tissue Culture Collection is already part of a European network (Eurobiobank). With the foundation of the MD-NET existing national and international collaborations have been optimised and extended. The two controlled clinical trials of the MD-NET have strengthened the collaborative effort. R17, a controlled clinical trial on Immunosuppressive Treatment in Duchenne muscular dystrophy, started as a multi-centre trial with the involvement of 8 participating clinical centres. Subsequently, centres from Switzerland (Basel) and Austria (Vienna) have joined the trial. The network coordinators and participants have promoted the idea of a collaborative network and raised awareness for the MD-NET and its service structures at a national and international level. In particular, the muscle tissue culture collection in Munich (S1) and the diagnostic service structures (S2) are accessed increasingly at an international level too.

The MD-NET coordinators and project leaders participated in a large number of national and international scientific conferences acknowledging the support and importance of the MD-NET for their research. The increasing international aspect of MD-NET activities and the high regard with which it is held by its participating member is also reflected by the fact that several of the founding members maintain close links with the MD-NET although they are now working abroad. In order to strengthen the MD-NET efforts to extend a German centre for trials in muscular dystrophy (S3) to a Europe-wide level, we closely collaborated with the European Neuromuscular Centre (ENMC).
 

Website

http://www.md-net.org/ 
 

Prof. Rudolf Korinthenberg, MD is head of the Department of Neuropediatrics and Muscular Disorders at Children’s Hospital, University Hospital Freiburg. He received his pediatric and neuropediatric training at University Hospital Münster/Westfalia and holds his actual position since 1990. He has published on a broad range of topics in child neurology, and during the last 18 years has concentrated on clinical scientific work in neuromuscular disorders. He has conducted several German multicentric trials in NMD as principal investigator, and he is head of the Trials Organisation Center of MD-Net and The Clinical Trials Coordination Center of TREAT-NMD.

Dr. Jan Kirschner is  coordinator of the Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan is joint coordinator of the German MD-NET since 2008 and was responsible for the coordination of a large multi-centre, placebo-controlled MD-NET trial in Duchenne muscular dystrophy. Jan has a long-standing interest in the diagnosis and treatment of myopathies and muscular dystrophies in children and is head of the neuromuscular laboratory at Freiburg University. Current areas of research activities include the pathogenesis of muscular dystrophies and clinical  trials in neurmuscular disorders. With the CTCC team Jan has established the TREAT-NMD trial site registry and works to improve trial readiness in the field of neuromuscular disorders.

Hanns Lochmüller MD (Professor of Neurology and Molecular Neurogenetics, Department of Neurology, Ludwig-Maximilians-University, Munich, Germany) coordinator of the MD-NET; 130 research papers; 1 patent

Clemens R. Mueller is Professor of Human Genetics at the University of Wuerzburg. He has trained as a molecular geneticist and has been director of the DNA diagnostic laboratory since 1985 with a focus on neuro-muscular and coagulation disorders. From 1994 to 2007 he has coordinated the external quality assessment (EQA) program for clinical molecular genetics of the German Society of Human Genetics. He has organized and provided several national and European EQA schemes and best practice meetings. He is a certified inspector for laboratory ISO-accreditation in human genetics.

Further, he is deputy chairman of the European Molecular Genetics Quality Network (EMQN) and partner of the EU projects Certified Reference Materials for Genetic Testing (CRMGEN), EuroGentest, TREAT-NMD and NMD-chip. He has been nominated by the German Federal Department of Health as an expert to the working party Biotechnology of OECD and to the national German gene diagnostics commission.

Maggie Walter is Assistant Professor of Neurology at the Ludwig-Maximilians-University of Munich. She has trained as a neurologist at the LMU Munich, and is working at the Friedrich-Baur-Institute, the neuromuscular department of the LMU, in leading position. Furthermore, she graduated with a master degree in management of social and health institutions.

Her main research interest are neuromuscular diseases, mainly muscular dystrophies, myofibrillar myopathies, inflammatory myopathies and clinical trials in neuromuscular patients. She is coordinator of the German Muscular Dystrophy Network (MD-NET), funded by the Federal Ministry of Education and Research (BMBF) since 2003, and member of TREAT-NMD, an European Network of Excellence in the 6th EU frame program for translational research in neuromuscular diseases. Since 1997, she is member of the Scientific Advisory Board of the Muscular Dystrophy Association of Germany (DGM), and ad hoc reviewer for several peer-reviewed journals.

Dr. Christine Scholz is MD-NET project co-ordinator since September 2009 and responsible for operative management of the network. Her qualifications are in Social Sciences, Public Health and Human Genetics. She started her career in scientific writing on patient drug use in particular during pregnancy. In 1984 she moved on to the Department of Medical Genetics, Children’s Policlinic at Munich University with responsibilities to research and teaching in the fields of coping strategies and compliance research (concerning prenatal diagnosis, doctor-patient-relationship, genetic counselling).

From 1994 to 2006 she served as Executive Director of Professional Association of German Geneticists (BVDH), the national professional lobby organisation. In this position her major achievement was the implementation and co-ordination of Human Genetics Quality Network which serves as a model for similar initiatives, in particular in the field of rare diseases throughout the European Union today.

Since 2007 she is Executive Managing Director of German Society for Human Genetics (GfH). For over twenty years Christine has been managing editor of “medizinischegenetik” (today published by Springer), a scientific German language journal of three Human Genetic Societies in Germany, Austria, and Switzerland. Starting from a solid knowledge base in publishing, she is responsible for planning focus issues, supervising peer reviews, and business development at the interfaces of science, industry and patient groups in different countries of Europe. She is also involved in the development of European-wide quality standards for diagnostic and treatment of diseases with major genetic components.