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Case Series

The Patient Experience of Gene Therapy for Hemophilia: Qualitative Interviews with Trial Patients

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Pages 767-770 | Published online: 22 Apr 2020

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (2)

Jacqueline Limjoco & Courtney D Thornburg. (2023) Gene Therapy for Hemophilia A: A Mixed Methods Study of Patient Preferences and Shared Decision-Making. Patient Preference and Adherence 17, pages 1093-1105.
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Łukasz Mazurkiewicz, Krystian Czernikiewicz, Joanna Rupa-Matysek & Lidia Gil. (2022) Emicizumab: a novel drug in hemophilia A prophylaxis – a narrative review. Expert Review of Hematology 15:10, pages 933-942.
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Articles from other publishers (13)

Simon Fletcher, Kathryn Jenner, Michael Holland & Kate Khair. (2023) Expectation and loss when gene therapy for haemophilia is not an option: An exigency sub‐study. Haemophilia 29:3, pages 776-783.
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Steven W. Pipe, Valder R. Arruda, Claudia Lange, Stephen Kitchen, Hermann Eichler & Samuel Wadsworth. (2023) Characteristics of BAY 2599023 in the Current Treatment Landscape of Hemophilia A Gene Therapy. Current Gene Therapy 23:2, pages 81-95.
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Giovanni Di Minno, Giancarlo Castaman, Raimondo De Cristofaro, Nicola Brunetti-Pierri, Lucio Pastore, Giuseppe Castaldo, Ugo Trama & Matteo Di Minno. (2023) Progress, and prospects in the therapeutic armamentarium of persons with congenital hemophilia. Defining the place for liver-directed gene therapy. Blood Reviews 58, pages 101011.
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Simon Fletcher, Kathryn Jenner, Luke Pembroke, Michael Holland & Kate Khair. (2022) The experiences of people with haemophilia and their families of gene therapy in a clinical trial setting: regaining control, the Exigency study. Orphanet Journal of Rare Diseases 17:1.
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Giancarlo Castaman, Giovanni Di Minno, Raimondo De Cristofaro & Flora Peyvandi. (2022) The Arrival of Gene Therapy for Patients with Hemophilia A. International Journal of Molecular Sciences 23:18, pages 10228.
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Wolfgang Miesbach, Sara Garcia Barcenilla, Gaby Golan & Sébastien Lobet. (2021) Implications of haemophilia gene therapy for the changing role of the multidisciplinary team. Haemophilia 28:1.
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Wolfgang Miesbach, Pratima Chowdary, Michiel Coppens, Daniel P. Hart, Victor Jimenez‐Yuste, Robert Klamroth, Michael Makris, Declan Noone & Flora Peyvandi. (2021) Delivery of AAV‐based gene therapy through haemophilia centres—A need for re‐evaluation of infrastructure and comprehensive care: A Joint publication of EAHAD and EHC. Haemophilia 27:6, pages 967-973.
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Frank W. G. Leebeek & Wolfgang Miesbach. (2021) Gene therapy for hemophilia: a review on clinical benefit, limitations, and remaining issues. Blood 138:11, pages 923-931.
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Simon Fletcher, Kathryn Jenner, Michael Holland, Steve Chaplin & Kate Khair. (2021) An exploration of why men with severe haemophilia might not want gene therapy: The exigency study. Haemophilia 27:5, pages 760-768.
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Evelien Krumb & Cedric Hermans. (2021) Living with a “hemophilia‐free mind” – The new ambition of hemophilia care?. Research and Practice in Thrombosis and Haemostasis 5:5, pages e12567.
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Valder R. Arruda, Jesse Weber & Benjamin J. Samelson-Jones. (2021) Gene Therapy for Inherited Bleeding Disorders. Seminars in Thrombosis and Hemostasis 47:02, pages 161-173.
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Elsa Aradom & Keith Gomez. (2021) The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre. The Journal of Haemophilia Practice 8:1, pages 32-44.
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Kate Khair, Lisa Steadman, Steve Chaplin, Michael Holland, Kathryn Jenner & Simon Fletcher. (2020) Parental perspectives on gene therapy for children with haemophilia: The Exigency study. Haemophilia 27:1, pages 120-128.
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