Understanding the support needs of people living with Fabry
Are you an adult living with Fabry Disease, or the parent/ carer of a child living with Fabry Disease? We are looking for enthusiastic and passionate individuals like you to share your opinions about experiences with Fabry Disease.
You may have participated in market research about Fabry before. We’d like to reassure you that this research, conducted on behalf of a pharmaceutical company by HRW Healthcare will focus on a diverse range of topics, some of which may not have been covered in detail in previous market research interviews you have done; and uses an online platform approach that lets you anonymously connect with people like you who have Fabry.
The findings from this market research will help us to understand the support needs of people living with Fabry: your input into this is really important.
A few of the topics we’ll be discussing include:
• Exploring the pain aspect of Fabry Disease
• The frustration that can come with misdiagnosis of Fabry Disease and diagnosis delays
• The family and genetic aspect of Fabry Disease
• Treatment of Fabry Disease (and life before, or without, treatment)
• What current support you are receiving and what future desires and needs you have
The main part of this research is your participation in an online community, an “Online Fabry Bulletin Board”, for which you will receive £240 as compensation for your time. In the board you will be asked to share your experiences with Fabry Disease and talk about the impact it has had on your life with other people who have also been affected by this condition. You may also be invited to participate in an optional follow-up 60-minute telephone interview for which you will receive £75 as compensation for your time.
How does the Online Bulletin Board work?
Over a two-week period, you and your fellow participants in the community will receive different activities and questions. You will receive and provide your answers to these via a user-friendly web platform at your own pace and convenience. There is also an app for the platform that you can download to use your mobile or tablet device to participate.
Some activities include a visual timeline where you can explain your journey with Fabry, and a blog post embodying your successes experienced living with Fabry, where we encourage video/audio snippets or even doodles!
Each activity or question should take no more than a maximum of 20 minutes each day to record and upload. If you need to take a break or spread out the tasks a little more, that is fine! This is designed to be flexible to you.
Some activities will be with the entire group/community (eight to ten people), where you will be able to share experiences and connect with others in a similar situation to yourself. Some will be private between you and a trained moderator who will manage the community and who will also make it clear which parts of the bulletin board are private or public.
Please note that your identity remains completely confidential and you will only need to share information that you are comfortable discussing.
We’re really excited about this project as it provides a fantastic, novel forum for people with Fabry to get together; and openly discuss their views and experiences with their condition. It is a chance for your voice to be heard, and to help the sponsor of this research really understand your needs and opinions when it comes to your “journey” with Fabry.