ARC 2023 Community Survey Results
for Amyloidosis Patients and Caregivers
About this Study
The Amyloidosis Research Consortium (ARC) conducted an online survey of individuals with amyloidosis and their caregivers to collect data and gather information on the experience with diagnosis and treatment of those affected by amyloidosis. With newly available treatments since 2018 and with initiatives to increase disease awareness, there have been rapid changes within the amyloidosis community. ARC plans on conducting the survey each year to see how the experience changes over time.
Over 1200 responses were completed for the 2023 ARC Annual Community Survey during April and May of that year. 87% of participants identified as amyloidosis patients, and 13% identified as caregivers. Responses were submitted from around the world, including North and South America, Europe, Africa, and Asia.
Their responses, summarized below, shed a light into the needs of those living with amyloidosis and the work that still needs to be done to improve their lives as we work towards a cure. They are the reason the team at ARC continues Pushing Research Forward to support patients and their families.
What We Measured
ARC asked amyloidosis patients and their caregivers about the journey to an amyloidosis diagnosis and treatment experience.
What We Found
Who participated in this study?
Where are participants located?
12% from other regions
9% from FL, 5% from NY, 5% from PA,
5% from MA, 5% from TX,
and 57% from 42 other states
Identity
Age Range
Top Organs Affected
System
Journey to Diagnosis
Average MDs Seen Before Accurate Diagnosis
Patients Diagnosed Per Year
Most Common Barriers to Diagnosis
AL Amyloidosis
Top Organs Affected
System
Top 3 Initial Symptoms
Ankles or Legs
AL Patients Diagnosed Per Year
Most Common Barriers to Diagnosis
Hereditary ATTR Amyloidosis
Top Organs Affected
System
Top 3 Initial Symptoms
Hereditary ATTR Amyloidosis Patients Diagnosed Per Year
Most Common Barriers to Diagnosis
getting a referral
getting testing
TTR Genetic Mutation (%)
Reason for Genetic Testing (%)
Current Therapy Hereditary ATTR Amyloidosis
(vutrisiran)
Vyndamax
(tafamidis)
(patisiran)
(diflunisal)
(inotersen)
Wild-Type ATTR Amyloidosis
Top Organs Affected
System
Top 3 Initial Symptoms
Current Treatment (%)
Patients by Gender
Wild-Type ATTR Amyloidosis Patients Diagnosed Per Year
Most Common Barriers to Diagnosis
getting a referral
finding a specialist
Diagnostic Testing Prior to Diagnosis
or HDMP Scan
Tests
MRI
Test
for Protein
Other Types
Top Organs Affected by Type
- AA
- Localized
- Hereditary Non-TTR
- ALECT2
Total Patients
Average MDs Seen Before Accurate Diagnosis
Number of Other Type Patients Diagnosed Per Year
