ARC has designed a survey to find out what matters most to patients and their caregivers about treatments for hereditary transthyretin amyloidosis (hATTR). Having this insight will help us achieve our goals to speed up the development of and access to new treatments for hATTR.
What does the survey ask about?
Patients: The survey asks you for information about your experience as a hATTR patient since you have been diagnosed. It asks about your symptoms and the impact that they may have on your daily life. It also asks about what treatments you have experienced and your views on these. Finally, the survey asks what matters to you most when thinking about future treatment.
Caregivers: The survey asks you for information about your experience as a caregiver. It asks about the symptoms that the person you care for experiences and the impact that they may have on your daily life. Finally, the survey asks what matters to you most when thinking about future treatment for hATTR.
How long will it take?
The survey should take no longer than 20 minutes to complete. It is made up of multiple choice and open-response questions. You can share as much or as little as you like in the open-response questions, however the more you tell us the more we will learn.
You can leave the survey and return to where you left off if you wish to take a break. You will need to use the same computer or device to complete the survey.
How will my responses be used?
What matters to patients drives all our work. We will use the survey findings across our programs to inform decision-makers, researchers and health professionals.
We will make a summary report of the findings available on our website soon.
We will treat what you tell us in confidence. We will not publish anything that allows you to be identified.
How do I find out more?
If you need any help completing the survey or have any questions please contact the ARC team on 617-467-5170 (USA) or 0131 550 3866 (UK).
We created separate surveys for patients and caregivers. Please only take the survey that pertains to you.