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The mission
of the MND-NET

Amyotrophic lateral sclerosis (ALS) is a severe and progressive neurological disease that is currently incurable. Available therapies aim at slowing down the disease (neuroprotective therapy) and treating symptoms and disabilities resulting from ALS (symptomatic therapy).

The members of the German ALS/MND-NET are clinical and scientific experts in the diagnosis and treatment of ALS and other motor neuron diseases. In addition to striving to provide a comprehensive treatment approach to all patients, the group’s mission is to explore new therapeutic approaches in clinical trials. As treatment options in ALS are currently very limited, we see a clear need to develop new evidence-based treatments for our patients.

History and expertise

Over the last ten years, a clinical and scientific network has been established that includes 25 German centers specialized on ALS and other motor neuron diseases (ALS/MND-NET). Within this network, a Germany-wide infrastructure including a patient registry and standards in diagnosis and treatment was established. The project was initially funded by the German Federal Ministry of Science and Technology and the German Society for Muscle Disorders (DGM; patient association).

Since 2012, longitudinal clinical data and biomaterial from over 7,000 patients with motor neuron diseases (including approximately 150 SMA patients) have been systematically collected (web-based eDC system, central biobank, both hosted at the Ulm coordination site).

This may include, for example, genetic testing. This can characterize specific subgroups to enable targeted treatments (e.g., treatment in the hardship program with ASO, AMG studies with gene therapies).

ALS families and presymptomatic gene carriers are studied and supported within a special cohort. In addition to the numerous research projects aiming at better understanding ALS pathogenesis, several Investigator Initiated Trials (IIT) have been conducted to develop new therapies (e.g. GERP-ALS, NCT00690118; RAS-ALS, NCT01879241; LIPCAL-ALS, NCT02306590).

Members of the German ALS/MND-NET have been involved in many multinational ALS trials driven by the pharmaceutical industry and have contributed significantly to successful recruitment.