Patient Experience and Treatment Preferences of ATTR Patients and their Caregivers |
Introduction
What is the purpose of this survey?
The Amyloidosis Research Consortium (ARC) is conducting this online survey of individuals with ATTR amyloidosis and their caregivers to increase the understanding of the disease burden of ATTR and treatment preferences.
The Amyloidosis Research Consortium (ARC) is conducting this online survey of individuals with ATTR amyloidosis and their caregivers to increase the understanding of the disease burden of ATTR and treatment preferences.
Who is ARC?
This study is sponsored by the Amyloidosis Research Consortium (ARC), a patient-led nonprofit, 501(c)(3) organization whose mission is to accelerate drug development and access to treatments to improve quality of life for all patients with amyloidosis. Understanding the disease burden of ATTR and treatment preferences and the burden of caregivers of patients with ATTR is important to our goal of enhancing care and quality of life of patients and caregivers throughout their amyloidosis journey.
This study is sponsored by the Amyloidosis Research Consortium (ARC), a patient-led nonprofit, 501(c)(3) organization whose mission is to accelerate drug development and access to treatments to improve quality of life for all patients with amyloidosis. Understanding the disease burden of ATTR and treatment preferences and the burden of caregivers of patients with ATTR is important to our goal of enhancing care and quality of life of patients and caregivers throughout their amyloidosis journey.
What am I asked to do?
This online survey will take 30 minutes to complete. Participation is voluntary and you can leave the survey at any time. Data gained through this survey will be confidential and anonymous. We will not ask for any identifying information.
This online survey will take 30 minutes to complete. Participation is voluntary and you can leave the survey at any time. Data gained through this survey will be confidential and anonymous. We will not ask for any identifying information.
What if I have questions?
If you need help completing the survey or have any questions, please contact the ARC team at 617-467-5170 or email Sabrina Rebello at srebello@arci.org.
If you need help completing the survey or have any questions, please contact the ARC team at 617-467-5170 or email Sabrina Rebello at srebello@arci.org.
You can read a more detailed research consent here. By 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.