The mission
of the MND-NET

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.