# APST Research > Data, strategy & evidence generation in ALS therapy The APST ALS Data Repository is a comprehensive and growing dataset combining the ALS Functional Rating Scale (ALSFRS-R), neurofilament light chain (NfL), ## Pages - [News](https://apstresearch.com/news/) - [GTC](https://apstresearch.com/gtc/) - [Legal information](https://apstresearch.com/legal-information/) - [APST Research](https://apstresearch.com/) ## Posts - [Discover ALS-OPM.org: Your New Go-To Resource for ALS Phenotypes and the ALSFRS-R!](https://apstresearch.com/discover-als-opm-org-your-new-go-to-resource-for-als-phenotypes-and-the-alsfrs-r/) # # Detailed Content ## Pages News - APST Research Skip to content HomeNews News Discover ALS-OPM.org: Your New Go-To Resource for ALS Phenotypes and the ALSFRS-R! We present ALS-OPM.org, a freely accessible resource webpage to support clinicians, researchers, and the broader ALS community by providing access to phenotype classification (ALS-OPM) and ALSFRS-R resources. Clinicians and researchers working in ALS require resources that are accessible, scientifically current, and suitable for integration into routine practice and research workflows. This website aims to address these needs by offering a central hub for standardized ALS-OPM and ALSFRS-R-SE resources in multiple languages. https://als-opm.org ALS-OPM.org: A New Hub for ALS-OPM and ALSFRS-R-SE resources. Scan the QR code to visit the website and access freely available resources. Key Offerings: The website serves as a central hub for sharing standardized ALS-OPM and ALSFRS-R-SE resources, including an interactive PDF for direct digital data capture. The ALS-OPM document center provides access to the recent ALS-OPM resources and their versions. The ALS-OPM resources support structured phenotype characterization, while the interactive PDF enables direct digital data capture. The ALSFRS-R-SE document center provides access to the ALSFRS-R original and ALSFRS-R-SE versions. The self-explanatory version of the ALSFRS-R supports patient self-assessment, reducing the burden on the center and providing data between visits. The resources support their use across different clinical and research settings. Together, these resources are intended to streamline workflows, improve precision, and reduce variation across sites and studies, both nationally and internationally. Dedicated download centers for ALS-OPM (left) and ALSFRS-R-SE (right) resources in multiple languages, supporting standardized... General terms and conditions for the use of APST Research mobile applicationsUpdated: 25 November 2025 There is a strong need for medical research in neurological diseases, particularly amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), and other neurodegenerative and neuromuscular disorders. Such research is essential for developing new therapies and improving health care in these conditions. A key advancement in modern medical science is the active involvement of patients through the structured collection of treatment data and the administration of therapy-related surveys. APST Research GmbH supports these research efforts by providing mobile research applications that collect and manage research-related data for medical studies. 1. Scope 1. 1 These general terms and conditions of use (GTC) apply to the use of services of APST Research GmbH (hereinafter referred to as "APST Research"), and the use of mobile software applications, including the "ALS App", “ALS Research App”, "SMA App” and “Neurofilament App” and other mobile applications (hereinafter referred to as "APST Research Apps"). 1. 2 The services of APST Research support patients (and their relatives) with chronic, serious, or rare diseases to participate in medical research projects. Patients are authorized as users of APST Research Apps and receive individual user accounts. The legal basis for this is derived from the individual agreements made upon the conclusion of the contract and these GTC. 1. 3 By using APST Research Apps, the patient (or legal representative) agrees to the terms and conditions and the privacy policy. The APST Research reserves the right to change... 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Data, strategy & evidence generation in ALS therapy The APST ALS Data Repository is a comprehensive and growing dataset combining the ALS Functional Rating Scale (ALSFRS-R), neurofilament light chain (NfL), and ALS motor phenotypes. This integrated dataset supports robust disease progression modeling, biomarker validation, and advanced analytics. It provides secure access to anonymized source data for trial design and optimization, creating significant scientific value for ALS drug development programs. News ALS Functional Rating Scale (ALSFRS-R) The ALS Functional Rating Scale-Revised (ALSFRS-R), is widely used to characterize the disease trajectory in clinical research and drug trials. The ALSFRS-R is the main instrument to assess symptoms and motor functions in ALS trials. It comprises 12 items with 5 rating options (0 to 4). Vertical heat map of a single patient's longitudinal data in the data repository. Each small coloured tile represents a data category arranged in a vertical stacked strip: ALSFRS (dark blue), NfL (green) and phenotype data (violet). The rate of ALS progression, quantified by the monthly change in the ALSFRS-R, is widely used to characterize the disease trajectory in ALS. It has been shown to correlate with survival and the biomarker neurofilament light chain (NfL). A reduction in the slowing of the functional decline is recognized by regulatory authorities as effectiveness endpoint in ALS drug development programs. Consequently, most clinical trial protocols have incorporated ALS progression, measured as the change of ALSFRS-R from baseline, as a primary or secondary outcome measure. ALS Functional Rating Scale as primary treatment response marker... ## Posts - Categories: Uncategorized - Tags: als-opm We present ALS-OPM. org, a freely accessible resource webpage to support clinicians, researchers, and the broader ALS community by providing access to phenotype classification (ALS-OPM) and ALSFRS-R resources. Clinicians and researchers working in ALS require resources that are accessible, scientifically current, and suitable for integration into routine practice and research workflows. This website aims to address these needs by offering a central hub for standardized ALS-OPM and ALSFRS-R-SE resources in multiple languages. https://als-opm. org ALS-OPM. org: A New Hub for ALS-OPM and ALSFRS-R-SE resources. Scan the QR code to visit the website and access freely available resources. Key Offerings: The website serves as a central hub for sharing standardized ALS-OPM and ALSFRS-R-SE resources, including an interactive PDF for direct digital data capture. The ALS-OPM document center provides access to the recent ALS-OPM resources and their versions. The ALS-OPM resources support structured phenotype characterization, while the interactive PDF enables direct digital data capture. The ALSFRS-R-SE document center provides access to the ALSFRS-R original and ALSFRS-R-SE versions. The self-explanatory version of the ALSFRS-R supports patient self-assessment, reducing the burden on the center and providing data between visits. The resources support their use across different clinical and research settings. Together, these resources are intended to streamline workflows, improve precision, and reduce variation across sites and studies, both nationally and internationally. Dedicated download centers for ALS-OPM (left) and ALSFRS-R-SE (right) resources in multiple languages, supporting standardized use in clinical and research settings.