The ALS pharmacy program

What does the ALS pharmacy program do?

The ALS Pharmacy Program includes individual care from pharmacies that specialize in ALS therapy and participate in medical research on ALS.

In addition to Riluzole, symptom-relieving (and rarely genetic) medication can be used. Specialization is also of particular importance in this therapy. In the APST

Since 2012, several pharmacies with special experience in the care of ALS patients (“ALS pharmacies”) have been active in the ALS care network throughout Germany. Through the existing network of ALS pharmacies, the organizational help of coordinators and the ALS app, APST can make an important contribution to optimal medication treatment.

Further information

What does an ALS pharmacy do?

Pharmacy staff with special expertise in ALS medications, especially for so-called “off-label” use (medications outside the original indication)

Decision support for the appropriate Riluzole: Riluzole film-coated tablet or melting film or suspension (depending on swallowing function & salivation)

Preparation of special prescriptions for speech disorders, unwanted laughter/crying, salivation or spastic gait disorders (if required, in consultation with the doctor)

Support in requesting prescriptions from ALS outpatient clinics or doctors’ surgeries Reminder of “running out” medication
Documentation of medication treatment on the outpatient partner portal

Data provision for ALS research

Important note: Most patients would like to keep their “traditional” local pharmacy. This request can of course be taken into account. In a typical situation, the pharmacy in the supply network will provide the special medication, while the other medication will continue to be provided by the local pharmacy.

How does the APST team provide support?

Contacting a specialized ALS pharmacy

Support with the organization of necessary prescriptions

Documentation of medical data on the APST care portal

Support with the use of the ALS app (optional)

APST supports the medication treatment of patients who are being treated in an ALS outpatient clinic or in a specialist practice or by their GP. The Outpatient Partner team will be happy to help you contact us or clarify any questions you may have.

How can you use the “ALS app” for your medication treatment?

Evaluation of swallowing function and salivation using the ALS function scale (ideally once a month): Basis for optimal medication supply through early therapy (e.g. with DMQ) and targeted dosage form (tablet, melt film or suspension)

Prescription request under “Care needs“

Redeem e-prescriptions with your health card or by uploading a photo

Support ALS research by consenting to the use of data

Further information

Spittel S, Grehl T, Weydt P, Kettemann D, Fabian R, Rödiger A, Smesny U, Steinbach R, Ilse B, Weyen U, Petri S, Lumi R, Bjelica B, Lingor P, Grosskreutz J, Göricke BM, Pfeilschifter W, Schmeja W, Dorst J, Mensch A, Siebert J, Norden J, Bernsen S, Subramanian SK, Hildebrandt B, Walter B, Münch C, Maier A, Meyer T. Dextromethorphan/quinidine (DMQ) for reducing bulbar symptoms in amyotrophic lateral sclerosis – assessment of treatment experience in a multicenter study. Amyotroph Lateral Scler Frontotemporal Degener. 2025 Sep 11:1-13. [Link to the publication]

Meyer T, Kettemann D, Maier A, Grehl T, Weyen U, Grosskreutz J, Steinbach R, Norden J, George A, Hermann A, Guenther R, Petri S, Schreiber-Katz O, Dorst J, Ludolph AC, Walter B, Münch C, Spittel S. Symptomatic pharmacotherapy in ALS: data analysis from a platform-based medication management program. J Neurol Neurosurg Psychiatry. 2020 Jul;91(7):783-785. [Link to the publication]

Meyer T, Funke A, Münch C, Kettemann D, Maier A, Walter B, Thomas A, Spittel S. Real world experience of patients with amyotrophic lateral sclerosis (ALS) in the treatment of spasticity using tetrahydrocannabinol:cannabidiol (THC:CBD). BMC Neurol. 2019 Sep 7;19(1):222. [Link to the publication]

It’s so easy to take part

Teilnahme über die ALS-App

Consent to the ALS pharmacy program can be given directly via the ALS app in just a few steps. Log in to the ALS app with the access data stored for the outpatient partner account.

This is how consent works:

Open the ALS app. Tap on “More” (symbol with three dots) at the bottom right of the start page and follow steps 1-3.