{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T15:06:54Z","timestamp":1784300814297,"version":"3.55.0"},"reference-count":36,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,5,21]],"date-time":"2026-05-21T00:00:00Z","timestamp":1779321600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,5,21]],"date-time":"2026-05-21T00:00:00Z","timestamp":1779321600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Haemophilia is a rare bleeding disorder now undergoing a major shift in care as gene therapy (GT), delivered through viral\u2011vector in vivo gene transfer, has enabled adults with haemophilia A or B to stop prophylaxis with minimal bleeding. As this treatment becomes a standard option in several European countries, nurses play an essential role in education, multidisciplinary care coordination, bleed management, and long\u2011term follow\u2011up, requiring ongoing professional development and potentially new specialist roles.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To describe and explore the multifaceted responsibilities of nurses throughout the GT pathway, emphasising their critical role in delivering holistic, patient\u2010centered care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>This manuscript draws on discussions among experienced European haemophilia nurses to examine their expanding responsibilities throughout the GT pathways.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Nurses play a central role throughout the GT pathway in haemophilia, guiding shared decision\u2011making, preparing patients for infusion, delivering safe peri\u2011infusion care, and coordinating extensive post\u2011infusion monitoring. Their responsibilities include eligibility assessment, patient education, vigilant observation during infusion, early detection of adverse events, and long\u2011term follow\u2011up of liver function, factor levels, and treatment durability. They also support psychosocial adjustment, provide lifestyle counselling, uphold ethical communication about uncertainties, and ensure continuity of care across hub\u2011and\u2011spoke networks. In addition, nurses contribute to registries, quality improvement, and research, generating real\u2011world evidence essential for evaluating long\u2011term safety and effectiveness of GT.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>GT in haemophilia requires well\u2011trained and well\u2011informed nurses to ensure safe delivery, effective follow\u2011up, and high\u2011quality patient support throughout the entire treatment pathway.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70317","type":"journal-article","created":{"date-parts":[[2026,5,21]],"date-time":"2026-05-21T09:50:50Z","timestamp":1779357050000},"page":"982-988","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Defining the Role of Nurses in Gene Therapy for Haemophilia"],"prefix":"10.1111","volume":"32","author":[{"given":"Greta","family":"Mulders","sequence":"first","affiliation":[{"name":"Department of Hematology Erasmus University Medical Center  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon","family":"Fletcher","sequence":"additional","affiliation":[{"name":"University of Oxford  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aysen","family":"Tasgin","sequence":"additional","affiliation":[{"name":"Department of Hematology Frankfurt University Hospital  Frankfurt Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marica","family":"Moro","sequence":"additional","affiliation":[{"name":"A. Bianchi Bonomi Hemophilia and Thrombosis Center IRCCS Ca' Granda \u2010 Ospedale Maggiore Policlinico  Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marl\u00e9ne","family":"Beijlevelt","sequence":"additional","affiliation":[{"name":"Department of Hematology, Amsterdam Medical Center  Amsterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Khair","sequence":"additional","affiliation":[{"name":"Haemnet  London 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