ATTR Treatment Affordability Survey
ARC is conducting an online survey of patients and caregivers for individuals living with ATTR (hereditary or wild-type) amyloidosis to study the financial impacts of currently available treatments. ARC hopes to use the data collected to inform and advocate for improved access to care.
Data gained through this survey will be confidential and anonymous.
You are eligible to participate if you are:
- A patient who has been diagnosed with and is experiencing symptoms of hereditary or wild-type ATTR amyloidosis, OR
- A caregiver of a symptomatic ATTR patient, and you are either financially responsible or share financial responsibility for treating and managing the patient’s ATTR
- Are age 18 or older, live in the United States and can communicate in English.
This survey will take approximately 15-20 minutes to complete and will contain questions asking about ATTR treatment experience and associated costs and their impact on quality of life. This survey has been reviewed by a central Institutional Review Board.
Electronic Informed Consent: Your participation in this study does not involve any risk to you beyond that of everyday life. The benefit of participating in this survey is that it may provide insights on the affordability of treatment for ATTR. The study’s results will be used to increase the understanding of what the actual cost of treatment is to ATTR patients and to inform and improve access to care. Participation in this survey is completely voluntary and you may exit this survey at any time. Refusal to participate will involve no penalty. View the ATTR Affordability Study Detailed Consent Form. By clicking on the survey link, you are agreeing to participate in this survey.