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Journals
The Journal of Haemophilia Practice
Volume 8 (2021): Issue 1 (January 2021)
Open Access
The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre
Elsa Aradom
Elsa Aradom
and
Keith Gomez
Keith Gomez
| May 02, 2021
The Journal of Haemophilia Practice
Volume 8 (2021): Issue 1 (January 2021)
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Article Category:
Clinical Research
Published Online:
May 02, 2021
Page range:
32 - 44
DOI:
https://doi.org/10.17225/jhp00174
Keywords
gene therapy
,
haemophilia
,
experience
,
views of people with haemophilia
,
nurse
© 2021 Elsa Aradom et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
A qualitative exploration of the experiences of people with haemophilia receiving gene therapy as part of clinical trials highlights the role of health care professionals as a key trusted source of information, and points to the pivotal role of the haemophilia nurse.
Figure 1
Interview questions
Figure 2
Participant demographics
Figure 3
Concerns pre-infusion, and motivating factors to take part in the gene therapy trial