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In a sub-project of the German Network for Motor Neuron Diseases (MND-Net), a joint project of the Federal Ministry of Education and Research (BMBF), AmbulanzPartner is used to collect care data from patients with amyotrophic lateral sclerosis (ALS). The project is being coordinated at Charité – Universitätsmedizin Berlin and is being carried out in cooperation…
The Federal Ministry of Health (BMG), the Federal Ministry of Education and Research (BMBF) and the Alliance for Chronic Rare Diseases (ACHSE e.V.) are among those involved in the National Action Alliance for People with Rare Diseases (NAMSE). NAMSE is intended to coordinate measures to improve the health situation of people with rare diseases and…
The specialist journal “Klinische Neurophysiologie” is aimed at neurophysiologists, neurologists, neurosurgeons and neurologists in hospitals and practices. In the June 2013 issue (Clin. Neurophysiol. 2013;44:159-166), AmbulanzPartner is described in detail using the example of care for people with amyotrophic lateral sclerosis (ALS).
Within the Federal Ministry of Education and Research (BMBF) network “MND-NET”, a pilot study on the feasibility of internet-based patient-reported outcomes (PRO) of disease progression, quality of life and communication options for patients with amyotrophic lateral sclerosis (ALS) in Germany (PRO-ALS01 study) is planned. The PRO-ALS01 study is being conducted nationwide at the university hospitals…
Ambulanzpartner.de is the name of a website that aims to make life easier for patients with severe neurological diseases. Social networks such as Facebook, MySpace and Xing bring millions of Internet users together every day. Doctors are now also using the principle of these communities of interest to improve outpatient care for patients with severe…