Participate in the Amyloidosis Community Survey
Now Open
For the past four years, ARC’s Community Survey has tracked how diagnosis, treatment and care are changing for people affected by amyloidosis. These annual surveys help us understand the experiences and needs of patients and caregivers and inform ARC’s future research, programs, and initiatives.
Whether this is your first time participating or you have taken the survey before, your responses are valuable. Each year’s survey provides a new snapshot of the amyloidosis community and helps us understand how experiences with diagnosis, treatment, and care may be changing over time.
You can participate if you are:
- An adult living with amyloidosis
- An adult caregiver of someone living with amyloidosis, including caregivers of individuals who have since passed away
This survey takes approximately 30 minutes to complete, depending on which questions apply to you. It includes questions asking about your demographic information, disease characteristics, treatment and experiences with care.
Participation is voluntary and you may leave the survey at any time. Responses are confidential and de-identified. Caregiver responses cannot be linked back to the individual they care for.
Choose the survey that best describes you:
Choisissez l’enquête qui vous décrit le mieux:
Patient atteint d’amylose AL →
Patient atteint d’amylose ATTR →
Wählen Sie die Umfrage, die am besten auf Sie zutrifft:
Scegli il sondaggio che meglio ti descrive:
Paziente con amiloidosi ATTR →
Escolha a pesquisa que melhor descreve você:
Paciente com amiloidose ATTR →
Elige la encuesta que mejor te describa:
Paciente con amiloidosis ATTR →
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 with amyloidosis and their caregivers. 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). This gives you control over your involvement in the research and protects your rights as a participant. The consent form provides crucial information about the study, including its purpose, procedures, potential risks and benefits, allowing you to make an informed decision about whether or not to participate. By clicking on the link and 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 in the research consent form.
