How can the data from the ALS app be used for research?

The data from the ALS app contributes directly to supporting ALS research. By continuously recording the ALS Functional Rating Scale (ALSFRS-R), the app makes it possible to precisely analyze the progression of the disease. This data is of particular importance for clinical trials, as it supports the development of disease models and digital placebo groups (so-called “digital twins”) to improve the statistical power of studies – or, in the longer term, eliminate the need for placebo groups altogether.

Another aspect of research is the linking of treatment data with the ALS progression rate (ALSPR), ALS phenotypes and the biomarker neurofilament light chain (NfL). This makes it possible to analyze whether certain drugs or treatment strategies slow down the progression of the disease. The effectiveness of non-pharmacological measures such as ventilation or nutritional therapies can also be scientifically evaluated using data from the ALS app.

The ALS app also allows users to take part in surveys and studies on new treatment methods, such as cough assistants, arm robots and wheelchair technologies. This research data helps to drive innovation in assistive devices and optimize care processes. Data on medication, nutritional products and respiratory therapies is also collected. This information is incorporated into scientific analyses and supports the development of new therapeutic approaches. Overall, the ALS app represents an opportunity for those affected to participate in ALS research without having to visit the study in person. By regularly collecting data, in particular the ALS function scale, they make an important contribution to ALS therapy research.