Drahos, Jennifer http://orcid.org/0000-0002-8454-9863
Boateng-Kuffour, Adriana
Calvert, Melanie
Levine, Laurice
Dongha, Neelam
Li, Nanxin
Pakbaz, Zahra
Shah, Farrukh
Martin, Antony P.
Funding for this research was provided by:
Vertex Pharmaceuticals
Article History
Accepted: 11 February 2024
First Online: 26 March 2024
Declarations
:
: This study was supported by Vertex Pharmaceuticals Incorporated.
: Jennifer Drahos, Adriana Boateng-Kuffour, and Nanxin Li are employees of Vertex Pharmaceuticals Incorporated and may hold stock or stock options in the company. Melanie Calvert is the Director of Birmingham Health Partners Centre for Regulatory Science and Innovation and Centre for Patient Reported Outcomes Research and a National Institute for Health and Care Research (NIHR) senior investigator; has received funding from Anthony Nolan, European Regional Development Fund-Demand Hub and Health Data Research UK, Gilead, GlaxoSmithKline, Janssen, Macmillan Cancer Support, Merck, NIHR, NIHR ARC WM, NIHR Birmingham BRC, NIHR BTRU Precision and Cellular Therapeutics, UCB Pharma, UKRI, and UK SPINE; and has received consultancy fees from Aparito, Astellas, CIS Oncology, Daiichi Sankyo, Gilead, Glaukos, GlaxoSmithKline, Halfloop, Merck, Patient-Centered Outcomes Research Institute, Pfizer, Takeda, and Vertex Pharmaceuticals Incorporated. Laurice Levine has received honoraria from Editas and Vertex Pharmaceuticals Incorporated; received consulting fees from Agios and bluebird bio; received support for congress participation from Agios; and has served as an advisory board member for Editas. Neelam Dongha has received consulting fees from Vertex Pharmaceuticals Incorporated. Zahra Pakbaz has received research grants from Amgen, Forma Therapeutics, Global Blood Therapeutics, Novartis, NovoNordisk, and Pfizer; received consulting fees from Agio, Amgen, Dova, Global Blood Therapeutics, Guide point, Novartis, Sanofi, Sobi, and Vertex Pharmaceuticals Incorporated; received honoraria from Cayeene Wellness Center and Child Foundation, Dova, and Global Blood Therapeutics Inc.; served as an advisory board or committee member for Alexion, Sanofi, and Sobi; and acted as a CME course director for the Cayenne Wellness Center and Child Foundation and planning committee member for their annual education symposium. Farrukh Shah has received research grants from IQVIA, Novartis Pharma AG, and Vertex Pharmaceuticals Incorporated; received honoraria from Biologix FZ co, Bristol Myers Squibb, Chiesi Ltd, and Novartis Pharma AG; served as an advisory board or committee member for Agios, bluebird bio, Bristol Myers Squibb, Silence Therapeutics Plc, and Vertex Pharmaceuticals Incorporated; and acted as Chair for the UK Forum on Haemoglobin Disorders. Antony P. Martin is a partner of QC Medica who was funded by Vertex Pharmaceuticals Incorporated to perform this research.
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: The authors confirm that the data supporting the findings of this study are available within the article and its supplementary information.
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: JD, AB-K, and APM were responsible for the study conception and design. APM conducted the interviews and focus group discussions. All authors participated in the data analysis and interpretation and contributed to the writing of the manuscript. All authors were involved in the decision to submit the manuscript for publication and read and approved the final version.