TY  - JOUR
AU  - Steinfurth, Laura
AU  - Grehl, Torsten
AU  - Weyen, Ute
AU  - Kettemann, Dagmar
AU  - Steinbach, Robert
AU  - Rödiger, Annekathrin
AU  - Grosskreutz, Julian
AU  - Petri, Susanne
AU  - Boentert, Matthias
AU  - Weydt, Patrick
AU  - Bernsen, Sarah
AU  - Walter, Bertram
AU  - GüNTHER, René
AU  - Lingor, Paul
AU  - Koch, Jan Christoph
AU  - Baum, Petra
AU  - Weishaupt, Jochen H
AU  - Dorst, Johannes
AU  - Koc, Yasemin
AU  - Cordts, Isabell
AU  - Vidovic, Maximilian
AU  - Norden, Jenny
AU  - Schumann, Peggy
AU  - Körtvelyessy, Peter
AU  - Spittel, Susanne
AU  - Münch, Christoph
AU  - Maier, André
AU  - Meyer, Thomas
TI  - Self-assessment of amyotrophic lateral sclerosis functional rating scale on the patient's smartphone proves to be non-inferior to clinic data capture.
JO  - Amyotrophic lateral sclerosis & frontotemporal degeneration
VL  - 26
IS  - 5-6
SN  - 2167-8421
CY  - Abingdon
PB  - Taylor Francis Group
M1  - DZNE-2025-00887
SP  - 495 - 506
PY  - 2025
AB  - 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.
KW  - Humans
KW  - Amyotrophic Lateral Sclerosis: diagnosis
KW  - Amyotrophic Lateral Sclerosis: psychology
KW  - Amyotrophic Lateral Sclerosis: physiopathology
KW  - Male
KW  - Smartphone
KW  - Female
KW  - Middle Aged
KW  - Aged
KW  - Mobile Applications
KW  - Self-Assessment
KW  - Disease Progression
KW  - Severity of Illness Index
KW  - Cohort Studies
KW  - ALS-App (Other)
KW  - Amyotrophic lateral sclerosis (Other)
KW  - amyotrophic lateral sclerosis functional rating scale-revised (Other)
KW  - remote assessment (Other)
KW  - self-assessment (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:39985291
DO  - DOI:10.1080/21678421.2025.2468404
UR  - https://pub.dzne.de/record/280050
ER  -