How long should the ALS function scale be collected in the ALS app?

The ALS Functional Rating Scale (ALSFRS-R) is determined in specialized outpatient clinics during every visit throughout the course of the disease . In addition to determining the ALSFRS-R during the outpatient visit, all those affected are recommended to determine the ALSFRS-R via the ALS app – even without a time limit. This also applies to patients who are no longer able to make the trip to an ALS outpatient clinic or who are not receiving treatment at a specialized ALS center. Even at an advanced stage of the disease, coordinators in the outpatient partner care network (which is linked to the ALS app) can view the current assessment of the ALSFRS-R and communicate certain care recommendations on this basis by phone or email or via the chat function of the ALS app.

Even without the use of care recommendations, the continued collection of the ALSFRS-R is of scientific interest and an important opportunity for ALS patients to strengthen ALS research. In particular, the questions on the daily duration of use of “mask ventilation” (non-invasive ventilation, NIV) or the presence of “artificial ventilation” (tracheotomy with invasive ventilation, TIV) are of particular relevance. These data can be used to scientifically evaluate the therapeutic effectiveness of ventilation therapy. The data on nutrition therapy, in particular the PEG tube, is also relevant for ALS research.

Overall, the ongoing, monthly assessment of the ALSFRS-R is a valuable contribution to research even if the rating on the scale does not change and the course of the disease is already very advanced.