Category: Forschung
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…
ALS Pharmacy Program Expands Its Network in Germany
The ALS Pharmacy Program is being further expanded with the addition of two new specialized pharmacies in Hanover and Quickborn. This development offers patients in these regions of Germany the opportunity to benefit from specialized care close to home. As a next step, the network of “ALS Pharmacies” is currently being expanded in southern Germany,…
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…
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…
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…
