{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,26]],"date-time":"2026-04-26T09:14:55Z","timestamp":1777194895504,"version":"3.51.4"},"reference-count":17,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2022,8,29]],"date-time":"2022-08-29T00:00:00Z","timestamp":1661731200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100018889","name":"Multiple System Atrophy Coalition","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100018889","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["R01NS107596"],"award-info":[{"award-number":["R01NS107596"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["U54NS065736"],"award-info":[{"award-number":["U54NS065736"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disord Clin Pract"],"published-print":{"date-parts":[[2022,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient\u2010reported contact registry open and free that relies on self\u2010reported diagnosis by the patient or caregiver.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Patients enrolled in GLOMSAR were invited to complete a custom\u2010designed online questionnaire about disease onset and symptom prevalence.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician\u2010reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Patient\u2010reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mdc3.13544","type":"journal-article","created":{"date-parts":[[2022,8,11]],"date-time":"2022-08-11T01:53:50Z","timestamp":1660182830000},"page":"967-971","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Patient\u2010Reported Symptoms in the Global Multiple System Atrophy Registry"],"prefix":"10.1002","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1345-6774","authenticated-orcid":false,"given":"Jose\u2010Alberto","family":"Palma","sequence":"first","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4493-5073","authenticated-orcid":false,"given":"Florian","family":"Krismer","sequence":"additional","affiliation":[{"name":"Department of Neurology Innsbruck Medical University  Innsbruck Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2172-7527","authenticated-orcid":false,"given":"Wassilios G.","family":"Meissner","sequence":"additional","affiliation":[{"name":"Centre Hospitalier Universitaire, Bordeaux, Service de Neurologie des Maladies Neurod\u00e9g\u00e9n\u00e9ratives  Bordeaux France"},{"name":"Department of Neurology University of Bordeaux  Bordeaux France"},{"name":"Department of Medicine University of Otago  Christchurch New Zealand"},{"name":"New Zealand Brain Research Institute  Christchurch New Zealand"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mechteld","family":"Kuijpers","sequence":"additional","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patricio","family":"Millar\u2010Vernetti","sequence":"additional","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miguel A.","family":"Perez","sequence":"additional","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2854-4179","authenticated-orcid":false,"given":"Alessandra","family":"Fanciulli","sequence":"additional","affiliation":[{"name":"Department of Neurology Innsbruck Medical University  Innsbruck Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucy","family":"Norcliffe\u2010Kaufmann","sequence":"additional","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pam","family":"Bower","sequence":"additional","affiliation":[{"name":"Multiple System Atrophy Coalition  McLean Virginia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gregor K.","family":"Wenning","sequence":"additional","affiliation":[{"name":"Department of Neurology Innsbruck Medical University  Innsbruck Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1851-9981","authenticated-orcid":false,"given":"Horacio","family":"Kaufmann","sequence":"additional","affiliation":[{"name":"Department of Neurology, Dysautonomia Center New York University School of Medicine  New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,8,29]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1311488"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-90-481-9485-8_6"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10286-015-0280-3"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.58.2.160"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.23192"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00702-013-1133-7"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10286-015-0279-9"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(12)70327-7"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(15)00058-7"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1159\/000507292"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.25880"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2022.02.003"},{"issue":"15","key":"e_1_2_8_14_1","first-page":"119","article-title":"Psychosis in multiple system atrophy (P2.119)","volume":"90","author":"Palma J\u2010A","year":"2018","journal-title":"Neurology"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0404.1995.tb06998.x"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e31820a0caf"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.parkreldis.2008.01.010"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10286-021-00825-2"}],"container-title":["Movement Disorders Clinical Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mdc3.13544","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mdc3.13544","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mdc3.13544","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T11:15:18Z","timestamp":1760958918000},"score":1,"resource":{"primary":{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/10.1002\/mdc3.13544"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,8,29]]},"references-count":17,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2022,10]]}},"alternative-id":["10.1002\/mdc3.13544"],"URL":"https:\/\/doi.org\/10.1002\/mdc3.13544","archive":["Portico"],"relation":{},"ISSN":["2330-1619","2330-1619"],"issn-type":[{"value":"2330-1619","type":"print"},{"value":"2330-1619","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,8,29]]},"assertion":[{"value":"2022-05-03","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-07-24","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-08-29","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}