Within the Federal Ministry of Education and Research (BMBF) network “MND-NET”, a pilot study on the feasibility of internet-based patient-reported outcomes (PRO) of disease progression, quality of life and communication options for patients with amyotrophic lateral sclerosis (ALS) in Germany (PRO-ALS01 study) is planned.
The PRO-ALS01 study is being conducted nationwide at the university hospitals in Berlin, Bochum, Hanover, Jena and Ulm. The internet-based recording of treatment results is carried out via AmbulanzPartner.de. The ethics committee of Charite – Universitätsmedizin Berlin has approved the ethics application for this healthcare research study, meaning that recruitment for the study can now begin.