How can the effectiveness of DMC in ALS be recorded and documented?

The individual response to dextromethorphan/quinidine (DMC) is noticed by the patient themselves through an improvement in speech and swallowing or with a reduction in salivation (as an indirect sign of an improvement in swallowing function). The therapeutic effect, but also the lack of effectiveness and possible side effects, are recorded in the medical consultation during treatment. The balance between the main effect (improvement or stabilization of bulbar symptoms) and possible side effects is also subject to medical consultation and monitoring.

The ALS Functional Rating Scale – ALSFRS-R-SE offers an additional option for the patient’s own assessment of symptom improvement or stabilization of bulbar symptoms. The first three questions on the scale relate to speech and swallowing functions as well as salivation. The entirety of these three questions is referred to as the bulbar subscale in clinical research. Previous studies investigating DMC have also examined the aforementioned “subscale”. An increase in the score or stabilization of an unchanged score as well as a reduction in the rate of decline over a period of several weeks (and months) can be considered a response to therapy.

Patients undergoing DMC treatment are made aware of the possibility of independently recording the ALS function scale using the ALS app. This data is of great interest for self-monitoring, but also for the treating physicians and for ALS research on DMC.