How can the ALS app help with DMC treatment?

Symptom improvement or stabilization of speech and swallowing can be recorded using the ALS Functional Rating Scale (ALSFRS-R-SE). Self-assessment of the ALSFRS-R is possible via the ALS app or via the outpatient partner platform (if access via a smartphone is not desired or possible).

The “ALS questionnaire” is offered on the start page of the ALS app. This questionnaire corresponds to the ALS functional scale, which has been optimized for use by those affected (“self-explanatory” scale, “SE”). The questionnaire comprises a total of twelve questions on typical symptoms of ALS, which can be answered in less than 5 minutes. In the context of DMC, the first three questions are particularly important. These questions concern speech and swallowing functions as well as salivation. The entirety of these three questions is referred to as the bulbar subscale in clinical research.

All patients with DMC are invited to complete the ALSFRS-R-SE self-assessment before taking the medication for the first time. The resulting score on the scale is used as the baseline before therapy. It is even preferable to carry out multiple assessments over several days before the start of therapy in order to record fluctuations and take them into account in the subsequent evaluation. According to B t the start of therapy, a daily assessment should be carried out for 14 days. Subsequently, a weekly assessment is recommended for the following 6 weeks. Thereafter, a biweekly survey of the ALSFRS-R-SE is sufficient. An increase in the score on the ALS functional scale or stabilization of an unchanged score over a period of several weeks (and months) as well as a reduction in the rate of decline can be evaluated as a response to therapy.

These data are of great interest for “self-monitoring”, but also for the treating physicians and for ALS research on DMC. Recording subjective responses to DMC is an additional possibility and optional. Of course, treatment with DMC is also possible if access to the ALS app is not possible or not desired.