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Category: Forschung
The ALS app at the international ALS symposium in San Diego
On December 4, 2025, the ALS app will be presented at the“ALS App Europe Initiative Meeting” at the International Symposium on ALS/MND in San Diego (USA). The meeting brings together European and American ALS centers, researchers and patient initiatives. You can find out more about the program here: https://symposium.mndassociation.org/programme/satellite-meetings/ The “ALS App Europe Initiative” meeting…
The new ALS-OPM classification is now in the ALS app.
We are pleased to introduce an important new feature in the ALS app today: The new OPM classification is now live! The OPM classification has been available in the current app version 5.10.4 for iOS (Apple) and Android (Google) since yesterday. What does the OPM classification mean? The phenotype of ALS – i.e. the individual…
Patient survey on THC:CBD in people with ALS
The THC:CBD patient survey is a systematic survey of 130 patients with amyotrophic lateral sclerosis (ALS), in which important findings on experience and satisfaction with treatment with cannabis-containing medicines containing tetrahydrocannabinol (THC) and cannabidiol (CBD) are obtained. Cannabis-containing treatment for ALS Medicines containing cannabis are used for severe illnesses when conventional medicines are not sufficiently…
Patient survey on eye control glasses for people with ALS
The patient survey on eye control glasses is a nationwide, systematic survey of patients with amyotrophic lateral sclerosis (ALS). The aim of the survey is to gain important insights into expectations of the eye-control glasses as well as experiences and satisfaction following treatment with the innovative aid. Drive the wheelchair safely with eye control glasses…
Study on the treatment of people with 5q-SMA with nusinersen in adulthood
Treatment with the drug nusinersen is available for people with 5q-associated spinal muscular atrophy (5q-SMA). In our application study with people with 5q-SMA who received nusinersen therapy in adulthood, the treatment goals, symptom progression and treatment satisfaction with the drug were systematically investigated. In the period from July 2019 to September 2020, Ambulanzpartner conducted an…
The SMA app during the coronavirus pandemic: support for adults with SMA and doctors
The corona pandemic necessitates infection control measures that are associated with a significant change in the care and treatment of people with spinal muscular atrophy (SMA). In this situation, telemedical visits between doctors and patients take on a previously unknown significance. Digital recording of SMA symptoms During a telemedical visit, the systematic communication of symptoms…
Nusinersen application study successfully started in people with SMA in adulthood
The nusinersen application study is a nationwide, systematic patient survey of 100 patients with spinal muscular atrophy (SMA), in which important findings on the efficacy of nusinersen in adulthood are gained. The drug Nusinersen The drug nusinersen (trade name Spinraza) was approved for the treatment of SMA in Europe in 2017 on the basis of…
Study to record treatment with nusinersen in adults
Nusinersen (Spinraza®) is approved for the treatment of 5q-associated spinal muscular atrophy (SMA). For infants and children, nusinersen can halt the progression of the disease and improve muscle function. For adults, no systematic data on treatment with nusinersen are available to date. Scientific treatment documentation is therefore necessary to improve the data situation for adults…
Pilot phase of the Ambulanzpartner care research seal completed
The pilot phase, in which the APST seal was tested on selected care partner websites, began at the start of 2017. The pilot phase showed us that the seal was stable and how often it was clicked on. Our healthcare research seal identifies companies, practices and individuals who participate in research with their patient care…