ALS outpatient clinics in Germany standardize ALS functional rating scale: ALS app adopts uniform questionnaire

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The ALS Functional Rating Scale (ALSFRSr – Amyotrophic Lateral Sclerosis Functional Rating Scale revised) is a questionnaire with 12 questions, with the help of which it is possible for people with amyotrophic lateral sclerosis (ALS) to record and evaluate the course of their disease. The data obtained in this way are used to estimate the individual course of the disease and to support therapy decisions. Furthermore, the questionnaire is important for research and development for new drugs in ALS.

The ALS Functional Scale has been used in German ALS outpatient clinics for more than 20 years. A recent analysis of the used German ALS Functional Rating Scale questionnaires by a working group of the MND-Net around Dr. André Maier, neurologist at the ALS outpatient clinic of the Charité, showed 10 different variants of the questionnaire in use.

This diversity of questionnaires complicates the scientific evaluation of the data and reduces the comparability of the research results.

Dr. André Maier and his working group started a process in 2021 to find a consensus for a uniform and self-explanatory German version of the ALS Functional Rating Scale. The questionnaire should be usable as a self-assessment scale as well as a third-party assessment scale. In January 2022, a uniform German version of the ALSFRSr was consented and adopted by the group.

The consented ALS Functional Rating Scale can now also be found in the ALS app. Patients using the ALS app and being treated in a German ALS outpatient clinic now use a uniform ALSFRS questionnaire for self-assessment of their disease course.

ALSFRS konsentiert in ALS App

Figure: The first question from the consented ALS Functional Rating Scale in the ALS app.

We would like to thank Dr. André Maier and all the participants of the MND-Net consensus group for their work on this important project.

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