{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T23:28:45Z","timestamp":1790206125945,"version":"4.1.0"},"reference-count":22,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2019,10,9]],"date-time":"2019-10-09T00:00:00Z","timestamp":1570579200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100003157","name":"Myasthenia Gravis Foundation of America","doi-asserted-by":"publisher","award":["Core Grant"],"award-info":[{"award-number":["Core Grant"]}],"id":[{"id":"10.13039\/100003157","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100013738","name":"Pacira Pharmaceuticals","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100013738","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":[[2019,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>The Myasthenia Gravis Patient Registry (MGR) is a voluntary, patient\u2010submitted database dedicated to improve understanding of care\/burden of myasthenia gravis (MG).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>In this study we present analyses of baseline records through July 2017 (n = 1140) containing data on the MG\u2014Activities of Daily Living (MG\u2010ADL) and the MG 15\u2010item Quality of Life (MG\u2010QOL15) instruments, two validated scales assessing quality of life in MG patients at sign\u2010up into the MGR.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Most registrants reported moderate to severe impairment of health\u2010related quality of life, with a median MG\u2010ADL score of 6 and a median MG\u2010QOL15 score of 21. Seventy\u2010one percent of the patients had received pyridostigmine. Corticosteroids, mycophenolate mofetil, and azathioprine were the most common immunomodulators\/immunosuppressants, with 85% of participants having ever using one of these agents. Forty\u2010seven registrants reported receiving intravenous immunoglobulin, and 30% received plasma exchange. Twelve percent reported other treatments, and 40% were unsure whether they received less common therapies. Forty percent had undergone thymectomy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>The MGR data correlate well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.26695","type":"journal-article","created":{"date-parts":[[2019,9,5]],"date-time":"2019-09-05T15:40:15Z","timestamp":1567698015000},"page":"707-715","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":84,"title":["Cross\u2010sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment"],"prefix":"10.1002","volume":"60","author":[{"given":"Gary","family":"Cutter","sequence":"first","affiliation":[{"name":"Department of Biostatistics University of Alabama at Birmingham  Birmingham Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Haichang","family":"Xin","sequence":"additional","affiliation":[{"name":"Department of Biostatistics University of Alabama at Birmingham  Birmingham Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Inmaculada","family":"Aban","sequence":"additional","affiliation":[{"name":"Department of Biostatistics University of Alabama at Birmingham  Birmingham Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ted M.","family":"Burns","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Virginia  Charlottesville Virginia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8860-1676","authenticated-orcid":false,"given":"Phillip H.","family":"Allman","sequence":"additional","affiliation":[{"name":"Department of Biostatistics University of Alabama at Birmingham  Birmingham Alabama"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ramin","family":"Farzaneh\u2010Far","sequence":"additional","affiliation":[{"name":"Department of Clinical Research Ra Pharmaceuticals, Inc.  Cambridge Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petra W.","family":"Duda","sequence":"additional","affiliation":[{"name":"Department of Clinical Research Ra Pharmaceuticals, Inc.  Cambridge Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henry J.","family":"Kaminski","sequence":"additional","affiliation":[{"name":"Department of Neurology George Washington University  Washington DC"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,10,9]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.revmed.2013.09.012"},{"key":"e_1_2_9_3_1","article-title":"Myasthenia gravis","volume":"376","author":"Gilhus NE","year":"2017","journal-title":"N Engl J Med."},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002790"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/14737175.2018.1491310"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/practneurol-2015-001126"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/cen3.12180"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.msard.2015.03.005"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.22140"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e3181dc1b1e"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.21185"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.21016"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.52.7.1487"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1212\/NXI.0000000000000507"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.26104"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.21053"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.21883"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.52.7.1487"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1352458506075031"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2013.02.008"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.22212"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ncl.2018.01.002"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1602489"}],"container-title":["Muscle &amp; Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.26695","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mus.26695","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.26695","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,9]],"date-time":"2023-09-09T00:05:41Z","timestamp":1694217941000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.26695"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,10,9]]},"references-count":22,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2019,12]]}},"alternative-id":["10.1002\/mus.26695"],"URL":"https:\/\/doi.org\/10.1002\/mus.26695","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,10,9]]},"assertion":[{"value":"2018-12-03","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-08-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-10-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}