Amyloidosis Community Survey
Recruitment now open!
For the past three years, the ARC Amyloidosis Community survey has collected data and information on the amyloidosis community’s experience with diagnosis and treatment. These critical annual surveys highlight the voice of our community and shape the future of patients and their families. Insights 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, your responses allow us to track changes in the perspectives of patients and their caregivers and how amyloidosis is being diagnosed, treated, and managed.
You can participate if you are:
- An individual amyloidosis and have reached the age of majority (also known as the legal age)
- A caregiver of an individual with amyloidosis, including those who cared or an individual who has since passed, and have reached the age of majority.
This survey will take approximately 30 minutes to complete and will contain questions asking about your demographic information, disease characteristics, pathway to diagnosis, and treatment and care satisfaction. Participation is voluntary and you can leave the survey at any time. Responses gained through this survey will be confidential. Patient privacy is secured because all responses are de-identified and caregiver comments cannot be traced back to the patient.
Choose the survey that best describes you:
Wählen Sie die Umfrage, die Sie am besten beschreibt:
Elige la encuesta que mejor te describa:
Escolha a pesquisa que melhor o descreve:
Scegli il sondaggio che meglio ti descrive:
Choisissez l’enquête qui vous décrit le mieux :
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 (Deutsch, Español, Português, Italiano, Français). By clicking on the survey link, you are agreeing to participate in this survey.
