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Category: Forschung
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…
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…
I DONATE. My data for better care: the outpatient partner register study
Donate your data for better care with the support of the Outpatient Partner Registry Study. The Outpatient Partner Registry Study collects treatment data and patient self-assessment data in individual modules. By ‘donating’ your data to the registry study, you are helping to improve research into the care of chronic neurological diseases. The Outpatient Partner Registry…
High satisfaction with edaravone (Radicut) in patients with amyotrophic lateral sclerosis (ALS)
Edaravone is approved in Japan under the name Radicut and in the USA under the trade name Radicava for the treatment of amyotrophic lateral sclerosis (ALS). Despite the lack of approval for edaravone in Europe, the drug is also available in Germany as a single import (in accordance with Section 73 of the German Medicines…
International publication on the results of platform-based supply management of assistive devices for ALS
In January 2018, the international journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration published the results of a care management program for assistive devices in amyotrophic lateral sclerosis (ALS) via the Ambulanzpartner internet platform. The provision of assistive devices is of central importance in ALS. Despite its socio-medical relevance, the provision of assistive devices in ALS…