University hospitals use AmbulanzPartner in the BMBF research project ‘MND-Net’ for Germany’s largest data resource on the care of patients with ALS

In a sub-project of the German Network for Motor Neuron Diseases (MND-Net), a joint project of the Federal Ministry of Education and Research (BMBF), AmbulanzPartner is used to collect care data from patients with amyotrophic lateral sclerosis (ALS). The project is being coordinated at Charité – Universitätsmedizin Berlin and is being carried out in cooperation with the ALS outpatient clinics at the university hospitals in Bochum, Hanover and Jena.

The four ALS centers have been actively involved in the project since the beginning of 2012. Around 2,200 ALS patients with a total of over 20,000 care processes have been registered since then. A care process corresponds to the coordination and documentation of the provision of an aid, remedy or care service. This has created the largest data resource to date on the actual care landscape for ALS patients in Germany.

With the aim of further developing the project, the MND-Net met on September 21, 2013 as part of the annual conference of the German Society of Neurology (DGN) in Dresden. The participation of other ALS outpatient clinics at the university hospitals in Dresden, Rostock and Ulm was analyzed. In 2014, the MND-Net will use the available data to clarify initial questions relating to healthcare research.