What is the purpose of this survey?
The Amyloidosis Research Consortium (ARC) is conducting this online survey of individuals with ATTR (hereditary or wild-type) amyloidosis to increase the understanding of the actual cost of treatment to ATTR patients, and the impact this cost may have on patients and their families. The results will be used to inform and advocate for improved access to care.

Who is ARC?
This study is sponsored by the Amyloidosis Research Consortium (ARC), a patient-led nonprofit, 501(c)(3) organization whose mission is to accelerate drug development and access to treatments to improve quality of life for all patients with amyloidosis. ARC advocates for inclusive, affordable access to amyloidosis therapies. Understanding the degree and level of financial impact of ATTR treatments on patients and their families is important to our goal of improving access to care.

What am I asked to do?
This online survey will take 15-20 minutes to complete. Participation is voluntary and you can leave the survey at any time. Data gained through this survey will be confidential and anonymous. We will not ask for any identifying information

What if I have questions?
If you need help completing the survey or have any questions, please contact the ARC team at 617-467-5170 or email Sabrina Rebello at srebello@arci.org. You may also contact the Institutional Review Board (WCG IRB) at 855-818-2289 or email at researchquestions@wcgirb.com.

You can read a more detailed research consent here. By participating in this survey, you are indicating that you have read the description of the survey and that you agree to the use of your data as described.

This survey is for patients and a separate survey is available for caregivers. If you are a caregiver, please go here for the caregiver survey.
 
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