Sabrina Rebello, ARC’s Senior Research Manager, presented an in-depth overview of key insights from our Annual Community Survey. This webinar focused on understanding the experiences of patients and caregivers throughout their diagnostic journey and ongoing care.
We explored common challenges faced by those impacted by amyloidosis, highlighted the areas where improvements can be made, and discussed patient preferences and perceptions in their treatment and care management. Whether you’re a healthcare professional, researcher, or advocate, this session will provide valuable perspectives to better understand how the journey to diagnosis and treatment has evolved over time and the continuing needs of the amyloidosis community.
Original Presentation Date:
May 14, 2025
0:00 — Welcome
3:20 — Introduction
3:44 — Why Research Matters
4:05 — Our Annual Survey
5:04 — What Patients Told Us
5:32 — AL Amyloidosis
8:17 — ATTR Amyloidosis
11:52 — Other Types of Amyloidosis
13:51 — What Caregivers Told Us
16:39 — What Do The Results Mean?
17:47 — Q&A Session
18:01 — How was the survey sample chosen? What was the percentage of response?
19:10 — What was the survey participant breakdown?
20:18 — What was the most surprising finding?
21:36 — Was ARC able to determine if the same respondants were returning every year?
22:00 — How can people help promote participation in future surveys?
22:46 — Will ARC continue tracking mental health in future surveys?
24:04 — Were there any notable differences in demographics between survey years?
24:50 — What are next steps for putting survey results into practice in the field?
25:31 — Is there a granular breakdown of age for responses to the survey?
27:04 — Will future surveys measure the impact of a lack of access to multidisciplinary medical teams?
28:13 — How will ARC measure the impact of action items moving forward?
29:03 — Does ARC have any plans to use AI in surveys or to analyze survey results?
30:08 — Are there specific subtypes that might especially require follow up?
31:19 — Is ARC survey data used by other organizations?
32:18 — Are ARC surveys and data available world wide?
32:56 — Which variant was most prevelant in the ATTRv results?
33:34 — Conclusion
Contact ARC:
Call +1 (617) 467-5170
Email ARC at support@arci.org
