{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,28]],"date-time":"2026-10-28T17:53:41Z","timestamp":1793210021541,"version":"4.5.0"},"reference-count":41,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2021,11,12]],"date-time":"2021-11-12T00:00:00Z","timestamp":1636675200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2022,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>The Midwest has the highest regional prevalence of self\u2010reported amyotrophic lateral sclerosis (ALS) in the United States, but with limited epidemiological studies. We aimed to explore the characteristics of patients with ALS in the Midwest.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This was a retrospective cohort study of participants with ALS deceased between January, 2010, and September, 2020, registered with the ALS Association Mid\u2010America Chapter. Demographics and clinical variables included gender, race\/ethnicity, military status, site of onset, interventions (gastrostomy, non\u2010invasive ventilation, tracheostomy), and visits to ALS Association\u2010registered clinics. Disease characteristics were compared to the National ALS Registry, and survival analysis was performed followed by sample augmentation with historical data to estimate survival with hypothetical censoring.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The database included 1447 participants with a mean age at diagnosis of 65.7\u2009\u00b1\u200911.9\u00a0y (&gt;60\u2009y at diagnosis: 72%). The median survival from symptom onset was 28.0\u00a0mo (95% confidence limit: 26.3, 29.7); sample augmentation increased this to 41.0\u00a0mo (38.5, 43.5). Bulbar onset disease and older age at diagnosis were associated with shorter survival. Participants not followed in ALS\u2010Association registered clinics were more frequently male, had familial onset and tracheostomy. Veterans (<jats:italic>N<\/jats:italic>\u00a0=\u00a0298) were older at diagnosis but had similar survival after adjustment for age.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussions<\/jats:title><jats:p>Our cohort had an older age at onset and more frequent bulbar onset than the National ALS Registry, perhaps reflecting ascertainment biases in each registry. Prospective cohort studies with more clinical and functional data are needed to better characterize ALS in Midwest, veterans, and non\u2010clinic populations, and to optimize care.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.27450","type":"journal-article","created":{"date-parts":[[2021,10,28]],"date-time":"2021-10-28T07:58:49Z","timestamp":1635407929000},"page":"217-224","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Demographics, clinical characteristics, and prognostic factors of amyotrophic lateral sclerosis in <scp>M<\/scp>idwest"],"prefix":"10.1002","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6474-8910","authenticated-orcid":false,"given":"Mai","family":"Yamakawa","sequence":"first","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sally","family":"Dwyer","sequence":"additional","affiliation":[{"name":"The ALS Association Mid\u2010America Chapter  Mission Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xing","family":"Song","sequence":"additional","affiliation":[{"name":"University of Missouri, Health Management and Informatics, School of Medicine  Columbia Missouri USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0790-5315","authenticated-orcid":false,"given":"Jeffrey","family":"Statland","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,11,12]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)31287-4"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2009.188151"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(18)30089-9"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm6746a1"},{"key":"e_1_2_12_6_1","first-page":"28","article-title":"The National Amyotrophic Lateral Sclerosis (ALS) registry","volume":"75","author":"Antao VC","year":"2012","journal-title":"J Environ Health"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2019.1612435"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2015.1051991"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2009.201251"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuro.2007.09.003"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.60.9.1560"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/0895-4356(89)90153-4"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2019.1682614"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.3390\/bs10010033"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1159\/000380855"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1159\/000365850"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1212\/CPJ.0b013e3182a1b8ab"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000049472.47709.3B"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/118.3.707"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(05)70042-9"},{"key":"e_1_2_12_21_1","unstructured":"Song X. 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