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Cystic Fibrosis Registry Report 2016. https:\/\/www.cysticfibrosis.org.uk\/the-work-we-do\/uk-cf-registry\/reporting-and-resources<\/ext-link>."},{"key":"ref5","first-page":"229","article-title":"An overview of international literature from cystic fibrosis registries: 1. 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Accessed 4 December 2017."},{"key":"ref16","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"V Braun","year":"2006","journal-title":"Qualitative Research in Psychology"},{"key":"ref17","unstructured":"Cystic Fibrosis Trust website. https:\/\/www.cysticfibrosis.org.uk\/news\/candid-views-on-life-expectancy<\/ext-link>. Accessed 4 December 2017."},{"key":"ref18","unstructured":"Ruth Keogh blog. http:\/\/blogs.lshtm.ac.uk\/ruthkeogh\/<\/ext-link>. Accessed 4 December 2017."},{"key":"ref19","unstructured":"UK CF Registry Survey Report. https:\/\/cms.cysticfibrosis.org.uk\/\/the-work-we-do\/uk-cf-registry\/reporting-and-resources<\/ext-link>. Accessed 4 December 2017."},{"key":"ref20","first-page":"388","article-title":"The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers","volume":"73","author":"NJ Rowbotham","year":"2018"},{"key":"ref21","first-page":"736","article-title":"Risk communication in practice: the contribution of decision aids","volume":"327","author":"AM O\u2019Connor","year":"2003"},{"key":"ref22","first-page":"792","article-title":"Simple and Multistate Survival Curves: Can People Learn to Use Them?","volume":"32","author":"T Rakow","year":"2012"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/dx.plos.org\/10.1371\/journal.pone.0213639","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,5,9]],"date-time":"2020-05-09T15:24:40Z","timestamp":1589037880000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0213639"}},"subtitle":[],"editor":[{"given":"Stefan","family":"W\u00f6lfl","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2019,4,12]]},"references-count":22,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2019,4,12]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0213639","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,4,12]]}}}