Information about this survey

Why is the Amyloidosis Research Consortium (ARC) asking me to take part in this survey?

This is an important survey for us. We want to know what matters most to patients about treatments for hereditary transthyretin amyloidosis (hATTR). Knowing this will help us achieve our goals to speed up the development of and access to new treatments for hATTR.

This survey is for hATTR patients only. We are asking caregivers of hATTR patients to take part in a separate survey.

If you are a patient with a different type of amyloidosis please keep an eye on our website for future surveys asking for your views.

What does the survey ask about?

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.

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).

 
5% of survey complete.

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