{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,23]],"date-time":"2026-06-23T00:27:59Z","timestamp":1782174479502,"version":"3.54.5"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T00:00:00Z","timestamp":1688428800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100008484","name":"BioMarin Pharmaceutical","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008484","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>As gene therapies are incorporated into clinical practice, shared decision\u2010making (SDM) is recommended for implementation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To inform development of a clinician SDM tool for haemophilia A gene therapy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Clinicians at US Hemophilia Treatment Centers completed semi\u2010structured interviews about their experience with SDM and provided feedback on a clinician SDM tool prototype. Interviews were transcribed verbatim for coding and thematic content analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Ten participants enrolled, eight physicians and two haemophilia nurses. All participants care for adults with haemophilia (1\u201027 years of experience) and 7 have gene therapy trials open at their institution. Confidence in having a clinical discussion about gene therapy included none (<jats:italic>N<\/jats:italic>\u00a0=\u00a01), slight (<jats:italic>N<\/jats:italic>\u00a0=\u00a03), moderate (<jats:italic>N<\/jats:italic>\u00a0=\u00a05) and high (<jats:italic>N<\/jats:italic>\u00a0=\u00a01). All participants reported familiarity with SDM and agreed that the tool would be useful for their clinical practice. Key themes in participant feedback for the tool were (1) language and presentation; (2) content; and (3) implementation. Participants highlighted the importance of providing unbiased information and having companion tools with patient\u2010centric language.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These data highlight the need for SDM tools for haemophilia A gene therapy. Key information to include in the tool are safety, efficacy, cost and detailed information on the gene therapy process. Data should be provided in an unbiased format and allow comparison to other treatments. The tool will be evaluated in clinical practice and refined as clinical trial data and real\u2010world experience mature.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14822","type":"journal-article","created":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T14:53:30Z","timestamp":1688482410000},"page":"1184-1190","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Development of a haemophilia A gene therapy shared decision\u2010making tool for clinicians"],"prefix":"10.1111","volume":"29","author":[{"given":"Jacqueline","family":"Limjoco","sequence":"first","affiliation":[{"name":"Hemophilia and Thrombosis Treatment Center Rady Children's Hospital San Diego San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5665-8958","authenticated-orcid":false,"given":"Courtney D.","family":"Thornburg","sequence":"additional","affiliation":[{"name":"Hemophilia and Thrombosis Treatment Center Rady Children's Hospital San Diego San Diego California USA"},{"name":"Department of Pediatrics University of California San Diego Health Sciences La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,4]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa2113708"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa2211075"},{"key":"e_1_2_11_4_1","unstructured":"European Medicines Agency EM. 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