Patients undergoing medical treatment at an ALS center in Germany are invited to participate in the Outpatient Partner Registry Study. The participation documents (study information and consent form) are handed out during the outpatient visit. Questions about participation in the study can also be asked and clarified at this time.

To date, the following analyses have been carried out in the Outpatient Partner Registry Study, published in scientific journals and thus made available to the medical public:

Publication on the robotic arm in ALS in Neurol Res Pract 2024

Publication on therapeutic movement devices for ALS in Sci Rep 2022

Publication on robotic assistance systems for ALS in JMIR Rehabilitation Assist Technology 2021

Publication on the provision of assistive devices for ALS in ALS-FTDG 2018

Publication on physiotherapy for ALS in JMIR Rehabil Assist Technol 2018

Publication on cannabis-containing medications for ALS in BMC Neurology 2019

Publication on symptom-reducing drugs in ALS in J Neurol Neurosurg Psychiatry 2020

Active patient participation is required in the registry study. During an outpatient visit, by telephone, an online survey or via the “ALS app”, patients are invited to take part in systematic surveys on ALS symptoms and treatment outcomes. The recording of patient-related treatment results using scales is becoming increasingly important in the development of new therapies. For example, the therapeutic effect of future ALS drugs is identified by a standardized survey of the ALS Functional Rating Scale (ALS-FRS).