ALS-App
iOS Universel / Medecine
The ALS App helps people with ALS monitor the progression of their disease and support ALS research. This app provides the following features:
ALS Functional Rating Scale (ALSFRS)
The ALSFRS-R widget, located in the Home menu of the ALS App, enables you to easily track how ALS impacts your daily life using your smartphone. This clinically validated self-assessment tool helps you monitor your disease progression and provides valuable data for research and the development of treatment. It includes 12 short questions about common ALS symptoms — such as speech, swallowing, hand use, walking, and breathing — each with five answer options. You complete it once a month in the App, and your total score is displayed in the Home menu.
The total score of the ALSFRS-R is displayed over time in the ALSFRS chart within the Course menu of the App. Your responses help track the course of the disease over time. Furthermore, the ALSFRS-R data are crucial for therapeutic research, as this scale serves as a key efficacy criterion for clinical trials in ALS. Taking a few minutes today can make a real difference in advancing ALS care and research.
ALS Progression Rate (ALSPR)
This widget, found in the Home menu of the ALS App, helps you independently track your ALS progression rate (ALSPR) — a key indicator of how your disease is changing over time. It uses your responses to the ALSFRS-R, which you complete regularly in the App, along with your symptom onset date (month and year), to calculate your monthly rate of decline. Your ALSPR appears on the home screen and is classified as slower, medium, or faster progression. In clinical trials, a lower ALSPR often shows that a treatment is working, so your data also supports scientific research. By using the ALSPR widget, you stay informed about your progression and help advance future ALS therapies.
Neurofilament light chain (NfL)
Neurofilament light chain (NfL) is a nerve cell-specific protein that is released into the blood when a nerve cell is damaged. NfL is regarded as a prognostic and progression marker of ALS. The NfL value in the blood, in addition to ALS symptoms, is a marker of ALS disease progression. Patients participating in the NfL-ALS study receive an indication of their neurofilament light chain (NfL) values. Each value (NfL concentration in blood serum, in picograms per milliliter) is displayed over time as the NfL chart in the Course menu of the ALS App. The NfL chart shows the individual NfL values in the blood serum throughout the disease as a function of age. NfL values above the blue area in the diagram are considered to be pathological.
Body Mass Index (BMI)
The BMI widget in the Course menu of the ALS App helps you easily track your body weight and understand its impact on your nutritional health — a key part of ALS care. Enter your measured weight (ideally every week) and save it with the corresponding date; the App automatically calculates your BMI using your height. Each entry appears in a clear chart showing your weight and BMI trends over time, helping you spot early signs of weight loss. This simple visual tool keeps you informed and supports personalized care planning, all from your phone.
Upload function (Scan and Photo function)
Scan function: With the Scan function in the ALS App, you can easily scan important medical documents and store them safely in the Documentation Center within the ALS App. This scan feature ensures that you stay in control of your documents and can share them when needed. Overall, the Scan function gives you a secure, paper-free way to manage your health documents, making communication with your care team easier, faster, and safer.
Photo function: The Photo function in the ALS App allows you to take and organize pictures in the Documentation Center of the ALS App that is important for your care and treatment. It reduces paperwork, avoids miscommunication, and helps your care team act more quickly when something is needed.
Quoi de neuf dans la dernière version ?
This version includes improvements to the chat function for care recommendations, as well as updates to the charts for ALSFRS, NfL, and vital signs. The ALS App is now also available in Swedish and Finnish.
