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

The ALS Functional Rating Scale (ALSFRS-R) is collected in specialized outpatient clinics at every visit (every 3-6 months). All patients are also recommended to complete the self-explanatory version (SE) of the ALSFRS-R via the ALS app at two-week intervals between medical appointments. For patients with a slower disease progression, it is also sufficient to determine the ALSFRS-R at one-month intervals.

It is advisable to answer the ALSFRS-R-SE questions regularly, as changes in symptoms and deficits can occur at intervals of one to two months during the typical course of ALS, which can be recorded at an early stage via the ALS app. When participating in the outpatient partner care network, coordinators 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. The ALSFRS-R survey via the ALS app at least once a month is also recommended for patients who are not being treated in an ALS outpatient clinic. For these patients, the ALSFRS-R questionnaire in the ALS app is the most effective way to obtain information about the ALS progression rate and specific care recommendations.

Even without the use of care recommendations, the monthly survey of the ALSFRS-R is of scientific interest and an important opportunity for ALS patients to strengthen ALS research without personally participating in a drug trial.