{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,28]],"date-time":"2026-02-28T06:40:16Z","timestamp":1772260816463,"version":"3.50.1"},"reference-count":29,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,8,15]],"date-time":"2022-08-15T00:00:00Z","timestamp":1660521600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000738","name":"U.S. Department of Veterans Affairs","doi-asserted-by":"publisher","award":["IK2CX001595\u201002"],"award-info":[{"award-number":["IK2CX001595\u201002"]}],"id":[{"id":"10.13039\/100000738","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2022,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction\/aims<\/jats:title><jats:p>Improved functional outcome measures in amyotrophic lateral sclerosis (ALS) would aid ALS trial design and help hasten drug discovery. We evaluate the longitudinal performance of the Rasch\u2010Built Overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS) compared to the Amyotrophic Lateral Sclerosis Functional Rating Scale Revised for Self\u2010Entry (ALSFRS\u2010RSE) as patient reported outcomes of functional status in people with ALS.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Participants completed the ROADS and the ALSFRS\u2010RSE questionnaires at baseline, 3\u2010, 6\u2010, and 12\u2010 mo using Research Electronic Data Capture as part of a prospective, longitudinal, remote, online survey study of fatigue in ALS from 9\/2020 to 12\/2021. The scales were compared cross\u2010sectionally (at baseline) and longitudinally. Correlation coefficients, coefficients of variation, and descriptive statistics were assessed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 182 adults with ALS consented to the study. This volunteer sample was comprised of predominantly White, non\u2010Hispanic, non\u2010smoking participants. Consented participant survey completion was approximately 90% at baseline and greater than 40% at 12 mo. The ALSFRS\u2010RSE and the ROADS had high, significant agreement at 3 and 6 mo by Cohen's kappa \u226571% (<jats:italic>p<\/jats:italic>\u00a0&lt;\u20090.001); the number of functional increases or plateaus on the two scales were not significantly different; and the coefficient of variation of functional decline was similar at the 6\u2010month mark, though higher for the ROADS at 3 mo and lower at 12 mo.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Although the ROADS performed similarly to the ALSFRS\u2010RSE in an observational cohort, it has psychometric advantages, such as Rasch\u2010modeling and unidimensionality. It merits further investigation as a patient reported outcome of overall disability and efficacy outcome measure in ALS trials.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.27691","type":"journal-article","created":{"date-parts":[[2022,7,29]],"date-time":"2022-07-29T10:29:18Z","timestamp":1659090558000},"page":"495-502","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Longitudinal comparison of the self\u2010entry Amyotrophic Lateral Sclerosis Functional Rating Scale\u2010Revised (<scp>ALSFRS\u2010RSE<\/scp>) and Rasch\u2010Built Overall Amyotrophic Lateral Sclerosis Disability Scale (<scp>ROADS<\/scp>) as outcome measures in people with amyotrophic lateral sclerosis"],"prefix":"10.1002","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9058-4331","authenticated-orcid":false,"given":"Stephen A.","family":"Johnson","sequence":"first","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5820-5880","authenticated-orcid":false,"given":"Katherine M.","family":"Burke","sequence":"additional","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zoe A.","family":"Scheier","sequence":"additional","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mackenzie A.","family":"Keegan","sequence":"additional","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alison P.","family":"Clark","sequence":"additional","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Chan","sequence":"additional","affiliation":[{"name":"Massachusetts General Hospital, Biostatistics Center Harvard Medical School  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christina N.","family":"Fournier","sequence":"additional","affiliation":[{"name":"Department of Neurology Emory University  Atlanta Georgia USA"},{"name":"Department of Neurology Atlanta Veterans Administration Medical Center  Decatur Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James D.","family":"Berry","sequence":"additional","affiliation":[{"name":"Neurological Clinical Research Institute and Sean M. Healey &amp; AMG Center for ALS Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,8,15]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/s0022\u2010510x(99)00210\u20105"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jns.2008.07.016"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2012-304701"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2015.1026829"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.2196\/14368"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/acn3.770"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2021.1900259"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-020-09774-8"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002251"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000000951"},{"key":"e_1_2_11_12_1","article-title":"Identifying patterns of ALS progression from sparse longitudinal data","author":"Ramamoorthy D","year":"2021","journal-title":"medRxiv"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000238505.22066.fc"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2018.1510008"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26921"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2019.4490"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/jns.12122"},{"key":"e_1_2_11_18_1","unstructured":"Emory University School of Medicine Department of Neurology.Rasch Overall ALS Disability Scale (ROADS). Available online on July 22 2022 athttps:\/\/med.emory.edu\/departments\/neurology\/programs_centers\/emory_als_center\/_documents\/roads.pdf"},{"key":"e_1_2_11_19_1","unstructured":"American Association for Public Opinion Research.AAPOR Code of Professional Ethics and Practices. Available online on July 22 2022 athttps:\/\/www.aapor.org\/Standards-Ethics\/AAPOR-Code-of-Ethics.aspx"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1179\/jmt.2009.17.3.163"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jad.2007.11.012"},{"key":"e_1_2_11_24_1","unstructured":"Shirley Ryan Abilitylab.Fatigue Severity Scale. 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