How does the ALS app help to decide on the appropriate dosage form of Riluzole?

The decision on the appropriate Riluzole is largely determined by the swallowing function and the presence of a PEG. Another deciding factor is any excess salivation (sialorrhea).

The Riluzole program has been established in ALS pharmacies to support the decision on the appropriate dosage form of Riluzole (and other medications). The decision on the appropriate Riluzole is made by a specialist in neurology. The patient is of course involved in this process. In ALS outpatient clinics, the ALS Functional Rating Scale (ALSFRS-R) is an important guide in the decision-making process. Swallowing (including the possible use of a PEG) and salivation are based on the ALS Functional Scale (questions 3 & 2 of the ALSFRS-R-SE). The ALSFRS-R-SE occupies a special position, as this scale can be used by both the doctor and the patient.

The ALSFRS-R-SE self-assessment via the ALS app allows patients to report their ALS-related symptoms (including swallowing and salivation) in a structured way. The results of the ALSFRS-R-SE self-assessment can be viewed by trained coordinators in the outpatient partner care network and by ALS pharmacies. If a swallowing disorder (or a PEG) is present, both pharmacies and coordinators can make a recommendation to switch the Riluzole medication to the melt film or suspension. The final decision lies with the doctor. The collaboration between ALS pharmacists, ALS coordinators, the patient and the doctor is known as the ALS pharmacy program.