Fletcher, Simon http://orcid.org/0000-0001-9018-6176
Jenner, Kathryn http://orcid.org/0000-0002-2704-0606
Holland, Michael http://orcid.org/0000-0002-9173-4100
Khair, Kate http://orcid.org/0000-0003-2001-5958
Funding for this research was provided by:
uniQure (2-061-003 - Haemophilia B - Late development)
Article History
Received: 3 October 2023
Accepted: 3 February 2024
First Online: 10 February 2024
Declarations
:
: Each participant was sent a copy of the study PIS detailing the rationale and goals of the study. Written informed consent was then obtained prior to interview and confirmed verbally at the interview. The study was reviewed by the UK Healthcare Research Authority and the Southeast Scotland Research Ethics Committee (20/SS/0061), and approval was granted for all study elements.
: All participants have consented to their anonymised data being used in any presentation or publication.
: Simon Fletcher, Kate Khair, Kathryn Jenner and Michael Holland are employees of Haemnet Ltd. Simon Fletcher is undertaking a Ph.D. funded by Haemnet Ltd.
: The Exigency Protocol was written with the assistance of a patient representative (a person with haemophilia who has subsequently gone on to have gene therapy). This representative was also involved in the design of the interview schedule. The protocol was also reviewed before REC submission by two patient representatives: a woman with Haemophilia with an affected son, and a partner of a person with haemophilia.