The individual progression of ALS in the ALS app: the new “My progression form” function

The course of ALS (amyotrophic lateral sclerosis) can be very different and individual. The way in which the symptoms develop is described by the specific progression that is present in each affected person.

Two factors are particularly important for an individual assessment of the course of the disease:

• The spread of motor symptoms: ALS symptoms spread from one affected body region to other areas. This means that the affected muscles gradually expand and can affect several regions of the body.
• Affection of the first and second motor neurons: In ALS, both the first and second motor neurons are affected. Damage to these nerve cells can influence the course of the disease in different ways.

To be able to better assess the course of ALS, so-called topical and systemic forms of progression are considered. Topical forms describe specific regions of the body, while systemic forms define the involvement of the first and second neurons. 

Overall, ALS is a complex disease in which individual differences play a major role. Close observation of the symptoms and the spread of the affected regions is important to find an individual assessment of the course for each affected person. 

The initial symptoms and progression forms are displayed in the new “My progression form” function in the ALS app.

The data on initial symptoms and progression are transferred to the ALS app from the two studies “NfL (neurofilament light chain) in ALS” and “id-ALS – identification of genetic changes in people with ALS”.

My progression form

Your initial symptoms, as well as the topical and systemic progression, are displayed in the “My progression” area. 

Explanation of the progression forms

Clicking on the ?-symbol opens a page with explanations of the initial symptoms and the progression of the disease.

Initial symptoms

The initial symptoms describe where the first symptoms occurred. The appearance of the first symptoms depends on which motor neuron, and which muscle group is particularly affected. 

Systemic progression

This form describes the pattern of spread of the symptoms. The spread and development of the symptoms vary greatly from person to person. 

Topical progression form

This form of progression describes the extent of damage to the first and second motor neurons and the resulting motor symptoms.

An overview of the variants and symptoms that are recorded and displayed in the ALS app as initial symptoms and progression can be found here: My progression form in the ALS app

What do the progression forms in the ALS app refer to?

The progression forms currently used in the ALS app were presented at the Outpatient Partner Network Meeting and the MND-Net Meeting in Berlin from May 10 to 11, 2023. They reflect the current state of the discussion on the progression of ALS in Germany.

At the 14th ALS Day of the Charité on 7.10.2023 in Berlin and online, the latest findings on the variants and progression of ALS will be presented and discussed.

The ALS Day thus offers a good opportunity to learn more about the progression of ALS and to exchange ideas with experts.

Thank you for your interest. Together, we can come one step closer to better treatment and care for ALS by understanding its progression.

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