What is the Riluzole program?
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). The ALSFRS-R has a special status, as this scale is used by both the doctor and the patient (ALSFRS-R-SE) can be collected.

By self-assessing the ALSFRS-R-SE via the ALS app patients can communicate 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 Riluzole program. This program is an offer in the outpatient partner care network and a component of the ALS pharmacy program.