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Clin Ther. 2021.","DOI":"10.1016\/j.clinthera.2021.05.013"}],"container-title":["The Patient - Patient-Centered Outcomes Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-022-00574-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s40271-022-00574-y\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-022-00574-y.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,15]],"date-time":"2025-04-15T11:18:01Z","timestamp":1744715881000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s40271-022-00574-y"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,3,4]]},"references-count":65,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2022,9]]}},"alternative-id":["574"],"URL":"https:\/\/doi.org\/10.1007\/s40271-022-00574-y","relation":{},"ISSN":["1178-1653","1178-1661"],"issn-type":[{"value":"1178-1653","type":"print"},{"value":"1178-1661","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,3,4]]},"assertion":[{"value":"23 January 2022","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 March 2022","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Financial support for this study was provided entirely by a contract with Parent Project Muscular Dystrophy. Parent Project Muscular Dystrophy receives financial support from Pfizer to conduct benefit-risk research. The funding agreement ensured the authors\u2019 independence in designing the study, interpreting the data, writing, and publishing the report. The authors and Parent Project Muscular Dystrophy are open to collaborations involving additional analysis and extensions of this survey.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Funding"}},{"value":"Ryan Fischer and Pat Furlong are employees of Parent Project Muscular Dystrophy. Norah Crossnohere, Elizabeth Vroom, and John Bridges have no conflicts to declare.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"Protocols for data collection and analysis were approved as research exempt from further human subject review (Johns Hopkins Bloomberg School of Public Health IRB No. 8175, The Ohio State University College of Medicine IRB No. 2019E0113). Protocols for engagement were deemed non-human subject research (Johns Hopkins Bloomberg School of Public Health IRB No. 7984).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Participants provided informed consent.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors and PPMD are open to collaborations involving additional analysis\u00a0and extensions of this survey.","order":7,"name":"Ethics","group":{"name":"EthicsHeading","label":"Availability of data and material"}},{"value":"The authors and PPMD are open to sharing code for collaborations involving additional analysis\u00a0and extensions of this survey.","order":8,"name":"Ethics","group":{"name":"EthicsHeading","label":"Code availability"}},{"value":"NC, JB, RF contributed to study design. NC, JB participated in data analysis. NC drafted the manuscript. NC, RF, PF, EV, JB provided critical revisions.","order":9,"name":"Ethics","group":{"name":"EthicsHeading","label":"Author contributions"}}]}}