{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T05:01:11Z","timestamp":1780549271449,"version":"3.54.1"},"reference-count":39,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T00:00:00Z","timestamp":1769904000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T00:00:00Z","timestamp":1769904000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,3,23]],"date-time":"2026-03-23T00:00:00Z","timestamp":1774224000000},"content-version":"vor","delay-in-days":50,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004312","name":"Eli Lilly and Company","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004312","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jns-journal.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of the Neurological Sciences"],"published-print":{"date-parts":[[2026,2]]},"DOI":"10.1016\/j.jns.2026.125732","type":"journal-article","created":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T07:38:50Z","timestamp":1767685130000},"page":"125732","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":2,"special_numbering":"C","title":["Evaluating ALSFRS-R as an indicator of disease milestones and functional independence: An observational study of US neurologists and their patients with amyotrophic lateral sclerosis"],"prefix":"10.1016","volume":"481","author":[{"given":"Nicole F.","family":"Mehdiyoun","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jack","family":"Wright","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca L.","family":"Robinson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander U.","family":"Brandt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Hoyt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jiaying","family":"Guo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathan","family":"Ball","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Halima","family":"Iqbal","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ciara","family":"Ringland","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gary","family":"Milligan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah E.","family":"Curtis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"1\u20132","key":"10.1016\/j.jns.2026.125732_bb0005","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1080\/21678421.2022.2059380","article-title":"Prevalence of amyotrophic lateral sclerosis in the United States using established and novel methodologies, 2017","volume":"24","author":"Mehta","year":"2023","journal-title":"Amyotroph. Lateral Scler. Frontotemporal. Degener."},{"key":"10.1016\/j.jns.2026.125732_bb0010","doi-asserted-by":"crossref","DOI":"10.3389\/fnmol.2022.825031","article-title":"Key disease mechanisms linked to amyotrophic lateral sclerosis in spinal cord motor neurons","volume":"15","author":"Bottero","year":"2022","journal-title":"Front. Mol. Neurosci."},{"issue":"11","key":"10.1016\/j.jns.2026.125732_bb0015","doi-asserted-by":"crossref","first-page":"1108","DOI":"10.1016\/S1474-4422(14)70219-4","article-title":"Analysis of amyotrophic lateral sclerosis as a multistep process: a population-based modelling study","volume":"13","author":"Al-Chalabi","year":"2014","journal-title":"Lancet Neurol."},{"key":"10.1016\/j.jns.2026.125732_bb0020","doi-asserted-by":"crossref","DOI":"10.1016\/j.ebiom.2021.103732","article-title":"Predictors of survival in patients with amyotrophic lateral sclerosis: a large meta-analysis","volume":"74","author":"Su","year":"2021","journal-title":"EBioMedicine"},{"issue":"1","key":"10.1016\/j.jns.2026.125732_bb0025","doi-asserted-by":"crossref","first-page":"702","DOI":"10.1038\/s41598-023-27863-2","article-title":"Symptoms timeline and outcomes in amyotrophic lateral sclerosis using artificial intelligence","volume":"13","author":"Segura","year":"2023","journal-title":"Sci. Rep."},{"key":"10.1016\/j.jns.2026.125732_bb0030","doi-asserted-by":"crossref","DOI":"10.1016\/j.eclinm.2022.101768","article-title":"Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): a national, cross-sectional study","volume":"55","author":"Zizzi","year":"2023","journal-title":"EClinicalMedicine"},{"issue":"1","key":"10.1016\/j.jns.2026.125732_bb0035","doi-asserted-by":"crossref","first-page":"12074","DOI":"10.1038\/s41598-023-39147-w","article-title":"Prospective study to evaluate quality of life in amyotrophic lateral sclerosis","volume":"13","author":"Caballero-Eraso","year":"2023","journal-title":"Sci. Rep."},{"issue":"Pt 3","key":"10.1016\/j.jns.2026.125732_bb0040","doi-asserted-by":"crossref","first-page":"847","DOI":"10.1093\/brain\/awr351","article-title":"A proposed staging system for amyotrophic lateral sclerosis","volume":"135","author":"Roche","year":"2012","journal-title":"Brain"},{"issue":"3\u20134","key":"10.1016\/j.jns.2026.125732_bb0045","doi-asserted-by":"crossref","first-page":"345","DOI":"10.1080\/21678421.2023.2297795","article-title":"Time from amyotrophic lateral sclerosis symptom onset to key disease milestones: analysis of data from a multinational cross-sectional survey","volume":"25","author":"Gebrehiwet","year":"2024","journal-title":"Amyotrop. Lateral Scler. Frontotemp. Degen."},{"issue":"1\u20132","key":"10.1016\/j.jns.2026.125732_bb0050","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1016\/S0022-510X(99)00210-5","article-title":"The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III)","volume":"169","author":"Cedarbaum","year":"1999","journal-title":"J. Neurol. Sci."},{"key":"10.1016\/j.jns.2026.125732_bb0055","series-title":"Cytokinetics","article-title":"The ALSFRS @ 20: evolution of the ALSFRS-R, history, clinimetric properties and future directions","author":"Cedarbaum","year":"2015"},{"issue":"1\u20132","key":"10.1016\/j.jns.2026.125732_bb0060","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1016\/j.jns.2008.07.016","article-title":"ALSFRS-R score and its ratio: a useful predictor for ALS-progression","volume":"275","author":"Kollewe","year":"2008","journal-title":"J. Neurol. Sci."},{"issue":"1\u20132","key":"10.1016\/j.jns.2026.125732_bb0065","doi-asserted-by":"crossref","first-page":"178","DOI":"10.3109\/17482960903093710","article-title":"Clinical significance in the change of decline in ALSFRS-R","volume":"11","author":"Castrillo-Viguera","year":"2010","journal-title":"Amyotroph. Lateral Scler."},{"issue":"1\u20132","key":"10.1016\/j.jns.2026.125732_bb0070","doi-asserted-by":"crossref","first-page":"26","DOI":"10.1080\/21678421.2023.2260832","article-title":"Harmonized standard operating procedures for administering the ALS functional rating scale-revised","volume":"25","author":"Shefner","year":"2024","journal-title":"Amyotroph. Lateral Scler. Frontotemp. Degen."},{"issue":"12","key":"10.1016\/j.jns.2026.125732_bb0075","doi-asserted-by":"crossref","first-page":"2243","DOI":"10.1007\/s10072-015-2343-6","article-title":"Heterogeneity in ALSFRS-R decline and survival: a population-based study in Italy","volume":"36","author":"Mandrioli","year":"2015","journal-title":"Neurol. Sci."},{"issue":"3\u20134","key":"10.1016\/j.jns.2026.125732_bb0080","doi-asserted-by":"crossref","first-page":"272","DOI":"10.1080\/21678421.2022.2140592","article-title":"A qualitative evaluation of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) by the patient community: a web-based cross-sectional survey","volume":"24","author":"Boyce","year":"2023","journal-title":"Amyotroph. Lateral Scler. Frontotemp. Degen."},{"issue":"5","key":"10.1016\/j.jns.2026.125732_bb0085","doi-asserted-by":"crossref","DOI":"10.3390\/cells10051220","article-title":"Milano-Torino staging and long-term survival in Chinese patients with amyotrophic lateral sclerosis","volume":"10","author":"He","year":"2021","journal-title":"Cells"},{"issue":"3","key":"10.1016\/j.jns.2026.125732_bb0090","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1111\/j.1468-1331.2008.02434.x","article-title":"Measuring function in advanced ALS: validation of ALSFRS-EX extension items","volume":"16","author":"Wicks","year":"2009","journal-title":"Eur. J. Neurol."},{"issue":"4","key":"10.1016\/j.jns.2026.125732_bb0095","doi-asserted-by":"crossref","first-page":"1106","DOI":"10.1093\/brain\/awae396","article-title":"Rethinking phase 2 trials in amyotrophic lateral sclerosis","volume":"148","author":"Benatar","year":"2025","journal-title":"Brain"},{"issue":"3\u20134","key":"10.1016\/j.jns.2026.125732_bb0100","doi-asserted-by":"crossref","first-page":"400","DOI":"10.1080\/21678421.2024.2322539","article-title":"Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change","volume":"25","author":"Young","year":"2024","journal-title":"Amyotroph. Lateral Scler. Frontotemp. Degen."},{"issue":"11","key":"10.1016\/j.jns.2026.125732_bb0105","doi-asserted-by":"crossref","first-page":"3063","DOI":"10.1185\/03007990802457040","article-title":"Real-world physician and patient behaviour across countries: Disease-Specific Programmes - a means to understand","volume":"24","author":"Anderson","year":"2008","journal-title":"Curr. Med. Res. Opin."},{"issue":"12","key":"10.1016\/j.jns.2026.125732_bb0110","doi-asserted-by":"crossref","first-page":"1707","DOI":"10.1080\/03007995.2023.2279679","article-title":"Real-world evidence generation from patients, their caregivers and physicians supporting clinical, regulatory and guideline decisions: an update on Disease Specific Programmes","volume":"39","author":"Anderson","year":"2023","journal-title":"Curr. Med. Res. Opin."},{"issue":"8","key":"10.1016\/j.jns.2026.125732_bb0115","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2015-010352","article-title":"Evidence for validity of a national physician and patient-reported, cross-sectional survey in China and UK: the Disease Specific Programme","volume":"6","author":"Babineaux","year":"2016","journal-title":"BMJ Open"},{"key":"10.1016\/j.jns.2026.125732_bb0120","doi-asserted-by":"crossref","first-page":"371","DOI":"10.2147\/DMSO.S120101","article-title":"Trends in medication use in patients with type 2 diabetes mellitus: a long-term view of real-world treatment between 2000 and 2015","volume":"9","author":"Higgins","year":"2016","journal-title":"Diabet. Metab. Syndr. Obes."},{"issue":"1","key":"10.1016\/j.jns.2026.125732_bb0125","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1136\/jnnp-2013-306589","article-title":"Development and evaluation of a clinical staging system for amyotrophic lateral sclerosis","volume":"86","author":"Chi\u00f2","year":"2015","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"key":"10.1016\/j.jns.2026.125732_bb0130","author":"European Pharmaceutical Market Research Association (EphMRA)"},{"key":"10.1016\/j.jns.2026.125732_bb0135","author":"US Department of Health and Human Services"},{"key":"10.1016\/j.jns.2026.125732_bb0140","author":"Health Information Technology (HITECH)"},{"key":"10.1016\/j.jns.2026.125732_bb0145","series-title":"Stata Statistical Software: Release 17","author":"StataCorp","year":"2021"},{"key":"10.1016\/j.jns.2026.125732_bb0150","series-title":"Intellegence Reporter Version 7.5","author":"I. UNICOM Systems","year":"2021"},{"issue":"12","key":"10.1016\/j.jns.2026.125732_bb0155","doi-asserted-by":"crossref","DOI":"10.1111\/ene.16475","article-title":"Exploring amyotrophic lateral sclerosis through the visual system: a systematic review","volume":"31","author":"Khanna","year":"2024","journal-title":"Eur. J. Neurol."},{"issue":"10","key":"10.1016\/j.jns.2026.125732_bb0160","doi-asserted-by":"crossref","first-page":"1918","DOI":"10.1111\/ene.14393","article-title":"Amyotrophic lateral sclerosis: a clinical review","volume":"27","author":"Masrori","year":"2020","journal-title":"Eur. J. Neurol."},{"issue":"1","key":"10.1016\/j.jns.2026.125732_bb0165","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1186\/s12955-022-01919-9","article-title":"Qualitative measures that assess functional disability and quality of life in ALS","volume":"20","author":"Hartmaier","year":"2022","journal-title":"Health Qual. Life Outcomes"},{"key":"10.1016\/j.jns.2026.125732_bb0170","doi-asserted-by":"crossref","DOI":"10.1016\/j.neulet.2021.135898","article-title":"Cognitive and behavioural impairment in amyotrophic lateral sclerosis: a landmark of the disease? A mini review of longitudinal studies","volume":"754","author":"Consonni","year":"2021","journal-title":"Neurosci. Lett."},{"issue":"7","key":"10.1016\/j.jns.2026.125732_bb0175","doi-asserted-by":"crossref","first-page":"1413","DOI":"10.1007\/s00415-017-8538-4","article-title":"Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model","volume":"264","author":"Bakker","year":"2017","journal-title":"J. Neurol."},{"issue":"5","key":"10.1016\/j.jns.2026.125732_bb0180","doi-asserted-by":"crossref","first-page":"381","DOI":"10.1136\/jnnp-2016-314661","article-title":"What does the ALSFRS-R really measure? A longitudinal and survival analysis of functional dimension subscores in amyotrophic lateral sclerosis","volume":"88","author":"Rooney","year":"2017","journal-title":"J. Neurol. Neurosurg. Psychiatry"},{"issue":"7\u20138","key":"10.1016\/j.jns.2026.125732_bb0185","doi-asserted-by":"crossref","first-page":"467","DOI":"10.1080\/21678421.2021.1900259","article-title":"Patient reported outcomes in ALS: characteristics of the self-entry ALS Functional Rating Scale-revised and the Activities-specific Balance Confidence Scale","volume":"22","author":"Chew","year":"2021","journal-title":"Amyotroph. Lateral Scler. Frontotemp. Degen."},{"issue":"5\u20136","key":"10.1016\/j.jns.2026.125732_bb0190","doi-asserted-by":"crossref","first-page":"570","DOI":"10.1080\/21678421.2024.2322549","article-title":"Longitudinal comparison of the self-administered ALSFRS-RSE and ALSFRS-R as functional outcome measures in ALS","volume":"25","author":"Erb","year":"2024","journal-title":"Amyotroph. Lateral Scler. Frontotemp. Degen."},{"issue":"1","key":"10.1016\/j.jns.2026.125732_bb0195","doi-asserted-by":"crossref","first-page":"32","DOI":"10.1179\/174313209X385734","article-title":"Quality of life and motor impairment in ALS: Italian validation of ALSAQ","volume":"32","author":"Palmieri","year":"2010","journal-title":"Neurol. Res."}],"container-title":["Journal of the Neurological Sciences"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022510X26000134?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022510X26000134?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,3,23]],"date-time":"2026-03-23T14:22:46Z","timestamp":1774275766000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0022510X26000134"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2]]},"references-count":39,"alternative-id":["S0022510X26000134"],"URL":"https:\/\/doi.org\/10.1016\/j.jns.2026.125732","relation":{},"ISSN":["0022-510X"],"issn-type":[{"value":"0022-510X","type":"print"}],"subject":[],"published":{"date-parts":[[2026,2]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Evaluating ALSFRS-R as an indicator of disease milestones and functional independence: An observational study of US neurologists and their patients with amyotrophic lateral sclerosis","name":"articletitle","label":"Article Title"},{"value":"Journal of the Neurological Sciences","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jns.2026.125732","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2026 The Authors. Published by Elsevier B.V.","name":"copyright","label":"Copyright"}],"article-number":"125732"}}