Community Research
Expanding our shared understanding of amyloidosis, those impacted by the disease, and the clinicians that treat them.
ARC’s community research programs amplify and elevate the voices of amyloidosis patients, caregivers, and healthcare providers
Our research plays a vital role in expanding our shared understanding of the perspectives of patients living with amyloidosis and their caregivers, as well as the real-world practice patterns and perspectives of healthcare providers that treat patients with amyloidosis
ARC partners with patients, caregivers, and healthcare providers in the design and development of our community research studies. This collaboration ensures that the research questions are relevant and meaningful, and the research methods are rigorous.
We use a range of research methods including literature reviews, patient interviews and patient panels, direct-to-patient and direct-to-physician surveys, secondary analysis of clinical trial datasets, and retrospective database analyses.
Our community research findings are shared in peer-review journals, conferences, healthcare policy and advocacy meetings, ARC’s website, and at other forums.
Annual Community Survey
Launched in 2022, ARC’s Annual Amyloidosis Community Surveys collect critical information on the international amyloidosis community’s experience with diagnosis and treatment. The results highlight the voice of our community and shape the future of patients and their families. These insights also help inform and develop future ARC initiatives and programs to best support the patients and caregivers we serve.
Total Participants to Date:
48 countries | 3923 ATTR patients | 1500 AL patients | 192 rarer amyloidosis patients | 687 caregivers
Learn more about what those living with amyloidosis face every day by viewing our previous community survey results:
ATTR Treatment Affordability Survey Study
Therapeutics have been approved that can slow the disease progression of ATTR to improve survival, hospitalizations, and quality of life; however, the cost of these therapeutics may be an obstacle for patients. ARC conducted an online survey of individuals with ATTR (hereditary or wild-type) amyloidosis to increase the understanding of the financial toxicity in ATTR patients and the impact it may have on patients and their families.
This research has been presented and published in various forms, including:
To participate in future ARC research, please sign up by completing our volunteer form.
For any other questions or inquiries, please email us at support@arci.org.
