{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T05:22:54Z","timestamp":1778131374283,"version":"3.51.4"},"reference-count":36,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T00:00:00Z","timestamp":1764633600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T00:00:00Z","timestamp":1764633600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction\/Aims<\/jats:title>\n                    <jats:p>The harmonized version of the ALS Functional Rating Scale \u2010 Revised (ALSFRS\u2010R) is typically administered according to standard operating procedures (SOPs) to ensure procedural consistency. In contrast, obtaining the self\u2010explanatory (SE) version of the ALSFRS\u2010R does not include the use of SOPs. The aim of this study was to examine the level of agreement between the harmonized and the SE version of the ALSFRS\u2010R in a cohort of ALS patients.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      In a prospective study, the harmonized ALSFRS\u2010R was assessed in 107 ALS patients. In parallel, all patients independently completed the ALSFRS\u2010R\u2010SE, either on a printed form (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200936) or remotely via the ALS App (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200971). Agreement between methods was investigated using Spearman's correlation, Lin's concordance correlation coefficient (CCC), Deming regression, Bland\u2013Altman plots and item\u2010level statistics including Kendall's tau\u2010b and the Stuart\u2013Maxwell test.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Total scores from ALSFRS\u2010R and ALSFRS\u2010R\u2010SE showed high correlation (\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u20090.91\u20130.95) and concordance (CCC\u2009&gt;\u20090.9). Deming regression (intercept\u22480; slope\u22481) and Bland\u2013Altman analysis (95% of values within limits of agreement [LoA]) revealed no systematic bias. Item\u2010level agreement was high (76.6% on average), with some variability in items such as handwriting, walking, and dyspnea. ALS progression rates were consistent (differences\u2009\u2264\u20090.02). ALSFRS\u2010R\u2010SE remained robust across remote digital and paper\u2010based assessments.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>The strong agreement between the harmonized and self\u2010explanatory versions of the ALSFRS\u2010R supports their interchangeable use. The SE format may facilitate remote digital assessment and reduce complexity of ALSFRS\u2010R assessment in research and clinical practice. Further studies are warranted to validate the ALSFRS\u2010R\u2010SE across larger cohorts, multiple languages, and diverse rater groups.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/mus.70092","type":"journal-article","created":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T09:56:22Z","timestamp":1764669382000},"page":"250-259","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Agreement Between the Harmonized and the Self\u2010Explanatory Versions of the Revised\n                    <scp>ALS<\/scp>\n                    Functional Rating Scale in a Clinical Setting"],"prefix":"10.1002","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2473-4116","authenticated-orcid":false,"given":"Andr\u00e9","family":"Maier","sequence":"first","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yasmin","family":"Koc","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Steinfurth","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dagmar","family":"Kettemann","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jenny","family":"Norden","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alessio","family":"Riitano","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"},{"name":"Ambulanzpartner Soziotechnologie APST GmbH  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-1643-0079","authenticated-orcid":false,"given":"Phillip","family":"Schmitt","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Felix","family":"Kolzarek","sequence":"additional","affiliation":[{"name":"Ambulanzpartner Soziotechnologie APST GmbH  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6853-9895","authenticated-orcid":false,"given":"Senthil","family":"Subramanian","sequence":"additional","affiliation":[{"name":"Ambulanzpartner Soziotechnologie APST GmbH  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christoph","family":"M\u00fcnch","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for ALS and Other Motor Neuron Disorders Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin, Corporate Member of Freie Universit\u00e4t Berlin and Humboldt\u2010Universit\u00e4t zu Berlin  Berlin Germany"},{"name":"Ambulanzpartner Soziotechnologie APST GmbH  Berlin Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9471-7798","authenticated-orcid":false,"given":"Susanne","family":"Spittel","sequence":"additional","affiliation":[{"name":"Department of Neurology, Center for 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