VOLUNTEERS NEEDED FOR RARE CONDITIONS AND QUALITY OF LIFE RESEARCH
Central University Research Ethics Committee Approval Reference: R78694/RE001
Accurately measuring quality of life is important, as information on quality of life is used widely to evaluate treatments, healthcare technologies and services. But do current health-related quality of life measures capture the lived experience of people with rare genetic conditions? Researchers at the Health Economics Research Centre, University of Oxford, are undertaking a new research project, titled “Evaluating quality of life in rare genetic diseases”, to find out.
This webpage provides information on the study and explains how you can participate.
What is the research about?
In this project, we aim to improve understanding of the quality of life of people experiencing rare genetic conditions and their parents/caregivers. Accurately measuring quality of life is essential to ensure people with rare genetic conditions and their caregivers can access appropriate healthcare technologies and services.
Taking part in this project will involve attending a 45-75 minute one-on-one interview via Microsoft Teams. We will ask you to complete three separate quality of life questionnaires one by one, ‘thinking aloud’ at the same time. If you are a caregiver, you will also be asked to complete up to three questionnaires about the quality of life of the person for whom you care (these interviews are therefore more likely to take up to 75 minutes). After completing the questionnaires, an interviewer will ask you how you felt about them. You will be compensated for your time with an Amazon voucher worth £25.
Who can participate in this study?
You may be eligible to take part in this study if:
- You have a child aged 2-17 who has a rare genetic condition, or
- You are an adult who has a rare genetic condition, or
- You are a caregiver for an adult with a genetic intellectual disability.
What happens next?
If you would like to take part in the project, please contact Xuemin Zhu at firstname.lastname@example.org to request to participate. When you get in touch, please specify if you have a child with a rare genetic condition, you are an adult who has a rare genetic disease, or you are a caregiver for an adult with a genetic intellectual disability.
Once you contact us, we will ask you to complete some screening questions. If you are eligible, an interview will then be scheduled at a time that is convenient for you. Please note that your participation is entirely voluntary, and there is no obligation to take part. Completion of the screening questions does not guarantee an interview as we aim to recruit a wide variety of people to the study.
If you have any questions about the research or would like more information, please contact Xuemin Zhu at email@example.com
Thank you for your interest in our study.
The Study Team