As part of our care network services, we provide patients and their relatives with web-based rating tools to assess assistive devices, medication, therapies, providers, therapists and physicians. Thus, Ambulanzpartner facilitates the capturing of the patients’ individual needs before, during and after medical therapy. Patients are offered compact, structured questionnaires. Typical topics for rating are patient satisfaction with the care provided, satisfaction with and without medication, or individual symptoms, such as dysphagia or pain. By giving their feedback “online”, patients play a more active part within the Ambulanzpartner care network. The results are published as anonymized aggregates on the Ambulanzpartner. Participation is subject to the following applicable rules:

We would like to share the care data collected in our network with those affected by severe neurological diseases and those interested in our endeavors in order to gain new insights. Care data are captured via our internet portal, analyzed and then depicted hereon as anonymized pooled data. Patients have previously given their consent to having their data anonymized and published. The analysis and publication of care data is our way of contributing to answering any outstanding questions on the treatment and management of patients with chronic neurological conditions and thus enhancing the care they receive.

The “Amyotrophic Lateral Sclerosis Functional Rating Scale revised“ (ALSFRSr) is a tool serving to capture the patients’ disease status and document the disease course. The ALSFRSr comprises 12 items. A patient’s bulbar symptoms (speech, salivation and swallowing ability), fine motor skills (handwriting, cutting food, getting dressed, seeing to their personal hygiene), gross motor skills (turning in bed, walking, walking the stairs) as well as breathing (respiratory function) are assessed. Patients or physicians rate the question with a score of 0 (= no function) to 4 (= normal function). The maximum total score on the ALSFRSr is 48 score points. The ALSFRSr is captured throughout the course of the disease, usually every quarter. Using the ALSFRSr, patients or the attending physicians may document the disease course online on the APST website.

Research projects in our network explore whether and how new medications and treatment options stand the test of time in real-life settings. Furthermore, they elucidate how access to the therapy options available can be facilitated. As a result of this care research, medical treatment guidelines and treatment recommendations for the selection, intensity and timing of the optimum employment of medication and special therapies (nutritional therapy, mask ventilation, cough assist, assistive devices, physiotherapy etc.) are devised. Sponsors and supporters of these investigations may comprise universities, pharmaceutical companies, manufactures of medical technologies or expert medical associations.