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@ARTICLE{Steinfurth:280050,
      author       = {Steinfurth, Laura and Grehl, Torsten and Weyen, Ute and
                      Kettemann, Dagmar and Steinbach, Robert and Rödiger,
                      Annekathrin and Grosskreutz, Julian and Petri, Susanne and
                      Boentert, Matthias and Weydt, Patrick and Bernsen, Sarah and
                      Walter, Bertram and GüNTHER, René and Lingor, Paul and
                      Koch, Jan Christoph and Baum, Petra and Weishaupt, Jochen H
                      and Dorst, Johannes and Koc, Yasemin and Cordts, Isabell and
                      Vidovic, Maximilian and Norden, Jenny and Schumann, Peggy
                      and Körtvelyessy, Peter and Spittel, Susanne and Münch,
                      Christoph and Maier, André and Meyer, Thomas},
      title        = {{S}elf-assessment of amyotrophic lateral sclerosis
                      functional rating scale on the patient's smartphone proves
                      to be non-inferior to clinic data capture.},
      journal      = {Amyotrophic lateral sclerosis $\&$ frontotemporal
                      degeneration},
      volume       = {26},
      number       = {5-6},
      issn         = {2167-8421},
      address      = {Abingdon},
      publisher    = {Taylor Francis Group},
      reportid     = {DZNE-2025-00887},
      pages        = {495 - 506},
      year         = {2025},
      abstract     = {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.},
      keywords     = {Humans / Amyotrophic Lateral Sclerosis: diagnosis /
                      Amyotrophic Lateral Sclerosis: psychology / Amyotrophic
                      Lateral Sclerosis: physiopathology / Male / Smartphone /
                      Female / Middle Aged / Aged / Mobile Applications /
                      Self-Assessment / Disease Progression / Severity of Illness
                      Index / Cohort Studies / ALS-App (Other) / Amyotrophic
                      lateral sclerosis (Other) / amyotrophic lateral sclerosis
                      functional rating scale-revised (Other) / remote assessment
                      (Other) / self-assessment (Other)},
      cin          = {Clinical Research (Bonn) / AG Radbruch / AG Falkenburger /
                      Clinical Research (Munich) / Clinical Study Center (Ulm)},
      ddc          = {610},
      cid          = {I:(DE-2719)1011001 / I:(DE-2719)5000075 /
                      I:(DE-2719)1710012 / I:(DE-2719)1111015 /
                      I:(DE-2719)5000077},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:39985291},
      doi          = {10.1080/21678421.2025.2468404},
      url          = {https://pub.dzne.de/record/280050},
}