How do ALS pharmacies contribute to research?

The ALS pharmacies systematically document the medicines dispensed on the outpatient partner platform. This means that this data is available for scientific evaluation in the Outpatient Partner register study, which has been running since 2012.

Important research questions concern the frequency, timing, duration and dosage of symptomatic medication in ALS. These data are of particular interest as no clinical trials have been conducted on symptomatic medications in ALS (except for riluzole). Due to the rarity of ALS and the limited interest of drug manufacturers, there is no prospect of separate drug trials for symptomatic drugs.

Data analysis via registry studies is therefore of crucial importance. By participating in the ALS pharmacy program, patients are helping to support ALS research through the registry study.