Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of pat
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(2020) 6:61
RESEARCH ARTICLE
Open Access
Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials Madison Foster1, Dean A Fergusson1,2, Terry Hawrysh3, Justin Presseau1,2,4, Natasha Kekre1,5, Stuart Schwartz3, Gisell Castillo1, Sarah Asad1, Grace Fox1, Harold Atkins5, Kednapa Thavorn1,2,6, Joshua Montroy1, Robert A Holt7, Zarah Monfaredi1,8 and Manoj M Lalu1,9,10*
Abstract Aim: Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the development of a clinical trial protocol to assess a new immunotherapy for blood cancer (chimeric antigen receptor T-cell therapy, CAR-T cell therapy). Methods: Our team developed a clinical trial protocol by working with patient partners from inception. Two patient partners with lived blood cancer experience were identified through referrals from our team’s professional network and patient organization contacts. Our patient partners were onboarded to the team and engaged in several studies conducted to develop the clinical trial protocol, including a systematic review of the existing literature on the therapy, patient interviews and a survey to obtain perspectives on barriers and enablers to participating in the trial, an early economic analysis, and a retrospective cohort study. (Continued on next page)
* Correspondence: [email protected] 1 Clinical Epidemiology Program, Blueprint Translational Research Group, Ottawa Hospital Research Institute, 501 Smyth Road, Ottawa, ON K1H 8L6, Canada 9 Department of Anesthesiology, The Ottawa Hospital, 501 Smyth Road, Ottawa, ON K1H 8L6, Canada Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Foster et al. Research Involvement and Engagement
(2020) 6:61
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Results: Engaging patient
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