Research for Rare - Research for rare diseases

MD-NET – Network for Muscular Dystrophy

MD-NET is an interdisciplinary network with the intention of bringing together experts from different areas of research to collaborate on the epidemiology, diagnosis, molecular pathogenesis and treatment of muscular dystrophy. It comprises participants from Neurology, Pediatric Neurology, Neuropathology, Human Genetics, Internal Medicine, Physiology, Developmental Biology, Molecular Pathology, Cell Biology, and Biochemistry. The MD-NET collaborators represent experts for nearly all forms of muscular dystrophy. Since the start of the MD-NET in 2003, the interactions between the research projects and the service structures have constantly increased. MD-NET was established as a ‚non-profit association’ – MD-NET e.V. – in 2006, giving the MD-NET the opportunity to act on a European-wide basis, and to become an equal partner of TREAT-NMD. TREAT-NMD (Assessment and Treatment of Neuromuscular Diseases, www.treat-nmd.eu) is a Network of Excellence funded within the 6th Framework Program of the European Commission. MD-NET leads the activities on harmonized European patient databases, biobanks and the Clinical Trial Coordination Centre. Major focus of the is on registering German muscular dystrophy patients to ensure trial readiness, the translation of research results into clinical trials and the transfer of results such as “standards of care” to the majority of muscular dystrophy patients in Germany. Moreover, the MD-NET will implement and disseminate results to professionals, patient organizations and the wider public, and collaborate with other partners and networks of rare disorders to ensure sustainability of the MD-NET. The ultimate goal is providing better diagnosis, treatment and care for all muscular dystrophy patients in Germany.

Projekte

Patientenregister

In enger Kooperation mit dem europäischen Partner TREAT-NMD (www.treat-nmd.eu) betreut das MD-NET gemeinsam mit den Selbsthilfegruppen benni &  co und der Initiative Forschung und Therapie für SMA den Aufbau und die Koordination europaweit harmonisierter Patientenregister. Bisher stehen folgende Patientenregister für Spinale Muskelatrophie (SMA), Muskeldystrophie Duchenne und Becker (DMD/BMD), FRRPopathien (MDC1C/LGMD2I) und Myotone Dystrophien (DM1, DM2) zur Verfügung:

Kontakt

Prof. Dr. med. Maggie Walter, M.A.
Prof. Dr. med. Matthias Vorgerd
Prof. Dr. med. Janbernd Kirschner

Friedrich-Baur-Institut
Klinikum der LMU München
Ziemssenstr. 1
80336 München
Tel.: +48 89 4400 57478
Fax: +49 89 4400 57402
E-Mail: info@md-net.org
Website: www.md-net.org

Publications