Amyloidosis Community Survey
ARC is conducting an online survey of patients and caregivers for individuals living with amyloidosis to collect data and information on patients and caregivers experience with diagnosis and treatment of amyloidosis and how this experience has changed over time.
Data gained through this survey will be confidential and anonymous.
You are eligible to participate if you are:
- A patient or a caregiver of a patient who has been diagnosed with amyloidosis
- Are age 18 or older and can communicate in English.
This survey will take approximately 15 minutes to complete and will contain questions asking about demographic information, disease characteristics, pathway to diagnosis, and treatment and care satisfaction. This survey has been reviewed and approved by a central Institutional Review Board.
This survey can be completed anonymously. As a thank you for your time in completing this survey, you have the option of entering into a drawing to win one of 10 available $150 gift cards at the end of the survey. You will need to provide your name and email address in order to enter into this drawing.
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 this to further understand and describe the experience with diagnosis and treatment of patients and caregivers affected by amyloidosis and how the experience has changed over time. The study’s results will be used to help advocate for care, treatment, and program needs of the amyloidosis community. 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 detailed research consent. By clicking on the survey link, you are agreeing to participate in this survey.