ATTR Patient and Caregiver Experience Survey

This survey has now ended. Thank you to everyone who participated and has helped guide the future of ATTR Drug Development.

ARC is conducting an online survey of patients and caregivers for individuals living with ATTR amyloidosis to collect data and information on their experience with the disease and its treatment.

In 2018, we conducted a study for hereditary ATTR amyloidosis patients and their caregivers and identified a high burden of disease for both patients and their caregivers. As a multisystemic disease, amyloidosis impacts many aspects of life for patients. The impact was high for caregivers as well, due to the emotional burden of caring for a loved one and the ability to work given their caregiver responsibilities. Treatment options were limited at the time of the study and now with four treatments approved for ATTR amyloidosis, the burden of disease may have changed. The goal of this new survey is to collect data and information on patients’ and caregivers’ experience with ATTR amyloidosis and its treatment to help inform the Amyloidosis Forum meeting on the unmet need of ATTR patients and their caregivers.

Formed in 2019, The Amyloidosis Forum (https://amyloidosisforum.org) has been developed through a public-private partnership between the Amyloidosis Research Consortium (ARC) and the US Food and Drug Administration (FDA). The overarching goal of the forum is to bring together the entire amyloidosis community to identify and bridge the scientific gaps that are acting as barriers to drug discovery and development for the treatment of amyloidosis.

The next Amyloidosis Forum meeting will set the stage by sharing the advancements in ATTR amyloidosis, evaluating the impact and unmet needs that currently exist, and identifying key initiatives with the aim of leveraging cross-stakeholder resources to collaboratively act on field-shaping priorities. Data from this survey will provide valuable insights from patients and their caregivers on the burden of ATTR amyloidosis.

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 ATTR amyloidosis
• Are age 18 or older

This survey will take approximately 30 minutes to complete and will contain questions asking about demographic information, disease characteristics, healthcare utilization, treatment experience, and quality of life. This survey has been reviewed and approved by a central Institutional Review Board.

This survey has now ended. Thank you to everyone who participated and has helped guide the future of ATTR Drug Development.

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 of ATTR and its treatment. The study’s results will be used to help inform the Amyloidosis Forum on the unmet need of ATTR patients and their caregivers. 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.