{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,30]],"date-time":"2025-10-30T10:50:52Z","timestamp":1761821452960,"version":"3.37.3"},"reference-count":4,"publisher":"Springer Science and Business Media LLC","issue":"7","license":[{"start":{"date-parts":[[2020,9,22]],"date-time":"2020-09-22T00:00:00Z","timestamp":1600732800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,9,22]],"date-time":"2020-09-22T00:00:00Z","timestamp":1600732800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100008358","name":"Hersenstichting","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100008358","id-type":"DOI","asserted-by":"crossref"}]},{"name":"Brugling Fund"},{"DOI":"10.13039\/501100006209","name":"Radboud University Medical Center","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100006209","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2021,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The coronavirus disease 2019 (COVID-19) crisis confronted us, like many researchers worldwide, with an unforeseen challenge during the final stages of a randomized controlled trial involving ataxia patients. Institutional guidelines suddenly no longer allowed regular follow-up visits to take place, impeding the clinical evaluation of long-term outcomes. Here, we discuss the various scenarios that we considered in response to these imposed restrictions and share our experience of home video recording by dedicated, extensively instructed family members. Albeit somewhat unconventional at first glance, this last resort strategy enabled us to reliably assess the study\u2019s primary endpoint at the predefined point in time and hopefully encourages researchers in other ongoing ataxia trials to continue their activities. Remote assessments of ataxia severity may serve as a reasonable substitute in interventional trials beyond the current exceptional situation generated by the COVID-19 pandemic, but will require further investigation.<\/jats:p>","DOI":"10.1007\/s00415-020-10231-9","type":"journal-article","created":{"date-parts":[[2020,9,22]],"date-time":"2020-09-22T20:57:14Z","timestamp":1600808234000},"page":"2343-2345","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["A word of hope for ataxia trials in COVID-19 time and beyond"],"prefix":"10.1007","volume":"268","author":[{"given":"Roderick P. P. W. M.","family":"Maas","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jordache","family":"Ramjith","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas","family":"Klockgether","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kit C. B.","family":"Roes","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bart P. C.","family":"van de Warrenburg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,9,22]]},"reference":[{"key":"10231_CR1","doi-asserted-by":"publisher","first-page":"149","DOI":"10.1186\/s12883-019-1379-2","volume":"19","author":"RPPWM Maas","year":"2019","unstructured":"Maas RPPWM, Toni I, Doorduin J, Klockgether T, Schutter DJLG, van de Warrenburg BPC (2019) Cerebellar transcranial direct current stimulation in spinocerebellar ataxia type 3 (SCA3-tDCS): rationale and protocol of a randomized, double-blind, sham-controlled study. 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Neurology 66:1717\u20131720","journal-title":"Neurology"},{"key":"10231_CR3","doi-asserted-by":"publisher","first-page":"711","DOI":"10.1002\/mds.28067","volume":"35","author":"SM Papa","year":"2020","unstructured":"Papa SM, Brundin P, Fung VSC, Kang UJ, Burn DJ, Colosimo C, Chiang HL, Alcalay RN, Trenkwalder C, Committee MD-SI (2020) Impact of the COVID-19 pandemic on Parkinson\u2019s disease and movement disorders. Mov Disord 35:711\u2013715","journal-title":"Mov Disord"},{"key":"10231_CR4","doi-asserted-by":"publisher","first-page":"105257","DOI":"10.1016\/j.cmpb.2019.105257","volume":"188","author":"S Summa","year":"2020","unstructured":"Summa S, Schirinzi T, Bernava GM, Romano A, Favetta M, Valente EM, Bertini E, Castelli E, Petrarca M, Pioggia G, Vasco G (2020) Development of SaraHome: a novel, well-accepted, technology-based assessment tool for patients with ataxia. Comput Methods Programs Biomed 188:105257","journal-title":"Comput Methods Programs Biomed"}],"container-title":["Journal of Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-020-10231-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00415-020-10231-9\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-020-10231-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,9,22]],"date-time":"2021-09-22T00:40:42Z","timestamp":1632271242000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00415-020-10231-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9,22]]},"references-count":4,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2021,7]]}},"alternative-id":["10231"],"URL":"https:\/\/doi.org\/10.1007\/s00415-020-10231-9","relation":{},"ISSN":["0340-5354","1432-1459"],"issn-type":[{"type":"print","value":"0340-5354"},{"type":"electronic","value":"1432-1459"}],"subject":[],"published":{"date-parts":[[2020,9,22]]},"assertion":[{"value":"24 June 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"15 September 2020","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 September 2020","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"RM, JR, and KR report no conflict of interest. TK receives or has received research support from the Deutsche Forschungsgemeinschaft (DFG), the Bundesministerium f\u00fcr Bildung und Forschung (BMBF), the Bundesministerium f\u00fcr Gesundheit (BMG), the Robert Bosch Foundation, the European Union (EU), and the National Institutes of Health (NIH). He has received consulting fees from Biohaven, Roche and UBC. He has received a speaker honorarium from Novartis and Bayer. BvdW is supported by research grants from ZonMw, Hersenstichting, Radboud university medical center, uniQure, and Gossweiler Foundation.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of interest"}},{"value":"The SCA3-tDCS study has been approved by the Medical Ethics Committee Arnhem-Nijmegen and has been conducted in accordance with the Declaration of Helsinki.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}