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Patient Survey on DMC in People with ALS
The DMC Patient Survey is a survey of patients with amyotrophic lateral sclerosis (ALS) that gathers important insights into their satisfaction with the DMC medication used to treat speech and swallowing difficulties. DMC Care for ALS Dextromethorphan/quinidine (DMC) is a medication used to treat speech and swallowing difficulties in patients with amyotrophic lateral sclerosis, with…
Patient Survey on PEG in People with ALS
The patient survey is a nationwide, systematic survey of 200 patients with amyotrophic lateral sclerosis (ALS), designed to gather important insights into patient satisfaction with percutaneous endoscopic gastrostomy (PEG) and medication administration via a PEG tube.Medication Administration via PEGPharmacotherapy for ALS is particularly complex when the disease is accompanied by progressive and severe swallowing difficulties…
Relaunch of the ALS App: Better Features and Faster Technology
In recent years, the ALS app has become a trusted companion for people with ALS. About 1,000 members of our network use it to track the progression of their disease, assess their prognosis, and participate in care management. With this relaunch, we’re offering faster performance and have improved several features. The latest update to the…
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: To be able to better assess the course…
Request an e-prescription, redeem it at your ALS pharmacy via the ALS app, and continue to support ALS research
The e-prescription is currently being rolled out nationwide. It will replace the “pink paper prescription.” Important: Even with the e-prescription, you can continue to receive your medications from your ALS pharmacy and participate in ALS research. There are two steps to follow. Step 1: Request a printed copy of the e-prescription You will continue to…
Update of the SMA app: new functions and improved user-friendliness
We have added some new functions to the SMA app and improved its user-friendliness. The latest update of the SMA app (version 2.0.3) is available to download free of charge from the Apple App Store and Google Play. We would like to briefly introduce you to the changes in the current version. Self-assessment of the…
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…