Understanding the preferences of people with haemophilia for gene therapy

Written by Aaron Dennis, December 11, 2020

You are invited to take part in a study which aims to explore the preferences of people with haemophilia for gene therapy and other haemophilia treatments.

This research will assess how adults with either moderate or severe haemophilia (haemophilia A or haemophilia B) in the United Kingdom value different features of treatments when considering whether to receive gene therapy.

If you decide to take part, you will enter into the study, which will be conducted online. First you will be provided with some more information about the study and you will be able to provide your consent to take part. You will then be asked to complete a survey, including answering some general questions about yourself and about your quality of life, which will be followed by a short educational video to watch on haemophilia treatments, including gene therapy. This will be followed by a choice experiment, where you will be presented with 14 hypothetical scenarios and you will be asked to choose one of two hypothetical options each time. To finish, you will be asked some questions about your health, your haemophilia and about your thoughts on gene therapy for haemophilia.

The study should take around 40 minutes to complete and should be completed in one sitting. You will receive a £30 e-voucher for your participation in this study. This will be provided to you by email via The Haemophilia Society following completion of the study.

We recommend using an up to date version of Google Chrome or Apple Safari web browser to take part in the study. If you only partly complete the study and return to it later, you will be timed out and have to restart, so we suggest you complete the study in full once you enter.

For further information on the study, and to participate, please follow this link: https://de1.surveyengine.com/5jrnb6ral8anp76qb7tuvioincnfhekr7gqknik7gp2gu

HCD Economics (a research agency) has been commissioned by Pfizer (a pharmaceutical company) to conduct this research.