Amyloidosis Community Survey
This survey has now ended. Thank you to everyone who participated and has helped guide the future of Amyloidosis Research.
Participate in Future ARC Surveys →
These critical annual surveys highlight the voice of our community and shape the future of patients and their families. The valuable insights gained help inform amyloidosis research community. Results from the survey will also help inform and develop future ARC initiatives and programs to best support the patients and caregivers we serve.
Whether this is your first time participating, or you have participated in this survey before, every piece of data collected allows us to track changes in the perspectives of patients and their caregiver and how their amyloidosis is being diagnosed, treated, and managed.
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 a legal adult (meaning you have reached the age of majority)
This survey will take approximately 20 minutes to complete and will contain questions asking about your 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.
As a thank you for your time in completing this survey, you can be entered into a drawing to win one of 10 available $150 gift cards.
This survey has now ended. Thank you to everyone who participated and has helped guide the future of Amyloidosis Research.
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 (Español) (Deutsch) (Português) (Italiano) (Français). By clicking on the survey link, you are agreeing to participate in this survey.
