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 to you as a caregiver of a hereditary transthyretin amyloidosis (hATTR) patient when it comes to treatments for 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 caregivers of hATTR patients only. We are asking for hATTR patients' views in a separate survey. 

If you are a caregiver of a patient with AL, wild-type of other 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 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 are able to tell us the more we will learn.

You can leave the survey and return to where you left it 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 you 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).

 
10% of survey complete.

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