Category: News
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…
Bold ideas for the joint design of assistive technology provision
We would like to thank you for attending the Outpatient Partner Conference for Assistive Technology Providers on November 15, 2019. It was a very interesting conference where we developed ideas together on how we can implement better care for the patients in our network. Here are some impressions of the conference. We will keep you…
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…
New software for the remedies module goes live
The remedies module that has been running on our internet platform since 2011 has been revised both technically and in terms of content. In terms of content, we have given the new remedies module some modified functions and new overviews. Technically, the new remedies module has been developed using responsive technology so that the content…
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…
Patients make intensive use of the online ALSFRS questionnaire – 1,000 scores already recorded
The 1,000 ALSFRS questionnaire was submitted online via Ambulanzpartner.de last weekend. We are delighted that the online self-assessment of the course of the disease is being used so intensively by patients. The 1,000 ALSFRS score was collected by Bernd König. “Your work is extremely important to me, especially in this situation,” writes Bernd König in…
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…
