How can I find out my ALS progression rate?

The ALS progression rate (ALSPR) is determined in specialized outpatient clinics or specialist practices that focus on the diagnosis and treatment of ALS. There, the ALS Functional Rating Scale (ALSFRS-R) is collected by specialists such as neurologists, study nurses or medical assistants. The ALSPR is then calculated on the basis of the scale values. This information is recorded in the medical documentation and made available in doctors’ letters for the patient’s perspective. The ALSPR also plays an important role in research. In clinical studies, especially when testing new drugs, it is an integral part of the study protocol and is recorded and documented at every study visit.

Patients can also determine their ALS progression rate independently by completing the ALS function scale via the ALS app. The prerequisite for this is to enter the onset of symptoms (month and year), which is documented in the app. The app then automatically calculates the ALSPR and displays it on the start page.