%0 Journal Article
%A Steinfurth, Laura
%A Grehl, Torsten
%A Weyen, Ute
%A Kettemann, Dagmar
%A Steinbach, Robert
%A Rödiger, Annekathrin
%A Grosskreutz, Julian
%A Petri, Susanne
%A Boentert, Matthias
%A Weydt, Patrick
%A Bernsen, Sarah
%A Walter, Bertram
%A GüNTHER, René
%A Lingor, Paul
%A Koch, Jan Christoph
%A Baum, Petra
%A Weishaupt, Jochen H
%A Dorst, Johannes
%A Koc, Yasemin
%A Cordts, Isabell
%A Vidovic, Maximilian
%A Norden, Jenny
%A Schumann, Peggy
%A Körtvelyessy, Peter
%A Spittel, Susanne
%A Münch, Christoph
%A Maier, André
%A Meyer, Thomas
%T Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient's smartphone proves to be non-inferior to clinic data capture.
%J Amyotrophic lateral sclerosis & frontotemporal degeneration
%V 26
%N 5-6
%@ 2167-8421
%C Abingdon
%I Taylor Francis Group
%M DZNE-2025-00887
%P 495 - 506
%D 2025
%X To investigate self-assessment of the amyotrophic lateral sclerosis functional rating scale-revised (ALSFRS-R) using the patient's smartphone and to analyze non-inferiority to clinic assessment.In an observational study, ALSFRS-R data being remotely collected on a mobile application (App-ALSFRS-R) were compared to ALSFRS-R captured during clinic visits (clinic-ALSFRS-R). ALS progression rate (ALSPR)-as calculated by the monthly decline of ALSFRS-R-and its intrasubject variability (ALSPR-ISV) between ratings were used to compare both cohorts. To investigate non-inferiority of App-ALSFRS-R data, a non-inferiority margin was determined.A total of 691 ALS patients using the ALS-App and 1895 patients with clinic assessments were included. Clinical characteristics for the App-ALSFRS-R and clinic-ALSFRS-R cohorts were as follows: Mean age 60.45 (SD 10.43) and 63.69 (SD 11.30) years (p < 0.001), disease duration 38.7 (SD 37.68) and 56.75 (SD 54.34) months (p < 0.001) and ALSPR 0.72 and 0.59 (p < 0.001), respectively. A paired sample analysis of ALSPR-ISV was applicable for 398 patients with clinic as well as app assessments and did not show a significant difference (IQR 0.12 [CI 0.11, 0.14] vs 0.12 [CI 0.11, 0.14], p = 0.24; Cohen's d = 0.06). CI of IQR for App-ALSFRS-R was below the predefined non-inferiority margin of 0.15 IQR, demonstrating non-inferiority.Patients using a mobile application for remote digital self-assessment of the ALSFRS-R revealed younger age, earlier disease course, and faster ALS progression. The finding of non-inferiority of App-ALSFRS-R assessments underscores, that data collection using the ALS-App on the patient's smartphone can serve as additional source of ALSFRS-R in ALS research and clinical practice.
%K Humans
%K Amyotrophic Lateral Sclerosis: diagnosis
%K Amyotrophic Lateral Sclerosis: psychology
%K Amyotrophic Lateral Sclerosis: physiopathology
%K Male
%K Smartphone
%K Female
%K Middle Aged
%K Aged
%K Mobile Applications
%K Self-Assessment
%K Disease Progression
%K Severity of Illness Index
%K Cohort Studies
%K ALS-App (Other)
%K Amyotrophic lateral sclerosis (Other)
%K amyotrophic lateral sclerosis functional rating scale-revised (Other)
%K remote assessment (Other)
%K self-assessment (Other)
%F PUB:(DE-HGF)16
%9 Journal Article
%$ pmid:39985291
%R 10.1080/21678421.2025.2468404
%U https://pub.dzne.de/record/280050