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Tag: Spinale Muskelatrophie
Update of the SMA app: new functions and improved user-friendliness
New functions have been added to the SMA app and its user-friendliness has been optimized. The latest update to version 2.0.7 is now available free of charge from the Apple App Store and Google Play. The most important new features of the current version are briefly presented below. Illustration of the individual course of SMA…
Launch event for the MANAGE-SMA study in Berlin
The kick-off event for the MANAGE-SMA study will take place in Berlin on March 23 and 24, 2026. The MANAGE-SMA study is the focus of the event. Treatment experience, treatment satisfaction and motor function in adult patients with 5q-SMA will be investigated. The therapies nusinersen 12 mg, risdiplam and the higher-dose nusinersen therapy (50/28 mg)…
Together since 2011 – 15 years of APST
2026 is a special year for us: APST is celebrating its 15th anniversary. Since our founding, we have stood for reliable support, dedicated research, and digital services for people with ALS, SMA, and other motor neuron diseases. Thank you for your trust, your loyalty, and the many shared experiences over the past years. We look…
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…
Digital care during the coronavirus pandemic: communicating requirements for medical aids and medication online
The reliable supply of aids and medication is crucial for people with amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. At the same time, transportation and travel restrictions during the coronavirus pandemic can make it more difficult to provide outpatient care. To ensure outpatient care, Ambulanzpartner offers patients the opportunity to document their care needs…
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…