Empowering Fabry conversations: Bridging the communication gaps
Why are we conducting this research?
We are conducting this research to better understand:
The key unmet needs of people living with Fabry when communicating with Healthcare professionals (HCPs), family and caregivers
How insufficient communication impacts quality of life (QoL) and disease management
What kind of tools could be developed to empower both patients and HCPs to better communicate
How can you get involved?
If you have a confirmed Fabry diagnosis, we would like to invite you to participate in a short questionnaire followed by a focus group.
To confirm your interest, you will need to complete the consent form in the link at the bottom of the page.
Once you have completed the consent form, Rare Disease Research Partners (RDRP) will review and select eligible participants to participate in the focus group. This review is to ensure we include a range of participants experiences within the discussion.
If you are selected to participate in the focus group you will be sent a link to an online questionnaire.
The questionnaire will take approximately 20 minutes to complete and will capture:
Information about you
Your experience of communication with your healthcare professionals
How any issues with communication affect you
Once you have completed the online questionnaire, RDRP will be in contact to arrange a suitable date and time for the focus group.
The focus group will be conducted via Zoom and will be moderated by two members of the RDRP team and observed by a representative from FIN and a representative from Sanofi. The focus group will last 2 hours and will be audio recorded.
Your participation in this research is voluntary. If you decide to take part, you are still free to withdraw at any time, including during the focus group, without giving a reason. To withdraw from the research, please contact RDRP via email or telephone.
t: +44 (0) 345 260 1087
What is the benefit of participating?
Despite communication challenges being widely recognised by both patients and HCP’s, research that documents it has not been published to date. This study will provide the opportunity to publish the insights we discover and help to develop tools that can empower patients and HCPs to better communicate.
What is the deadline?
If you are interested in taking part, please complete the consent form by TBC.
How long will it take?
The questionnaire consists of multiple-choice questions and will take approximately 20 minutes to complete.
You may complete the questionnaire in one sitting or in parts. If you need to stop and come back as time permits, please bookmark this page and re-enter the questionnaire using the links below on the same device (if you start the questionnaire on your mobile phone, you need to come back to complete it on the same device).
The focus group will last 2 hours.
We are inviting participants globally therefore we will try to accommodate time zones as best we can.
Who is conducting this research?
This study is being conducted by Rare Disease Research Partners, an international research organisation based in the UK, in cooperation with FIN and Sanofi.
If you still have questions, please get in touch with RDRP at:
Rare Disease Research Partners
MPS House, Repton Place, White Lion Road
Amersham, Buckinghamshire, HP7 9LP, UK
t: +44 (0) 345 260 1087
How is my data used?
You will be asked to share your name, contact number, email address, age, sex, country where you live, and details about your Fabry diagnosis in the questionnaire. You will be asked to discuss any problems you have with communication with HCPs in the focus group. This information will only be used for the purposes of this research and full details of how your information will be used can be found on the consent form.
You can view our Data Protection and Privacy Policy here.
IMPORTANT! Please bookmark this page and click on the same link above to return to the questionnaire if you need to stop and come back later to complete your answers. Note that you must come back on the same device (same mobile device, computer, etc.) or you will be prompted to start over.
You must also ‘accept cookies’ if prompted by your internet browser. This will save your responses and allow you to return to it at another time.
For technical support, contact info@rd-rp.com
