Patients with amyloidosis, including transthyretin amyloid cardiomyopathy (ATTR-CM), are voicing a need for clearer diagnoses, better treatments and stronger support, according to new findings from the Amyloidosis Research Consortium’s (ARC) Annual Community Survey presented in a recent webinar.
The survey showed moderate satisfaction with current treatment options and rising reliance on non-specialized care, while patients continue to prioritize living longer, preserving physical function and affording therapy.
Presented by ARC Senior Research Manager Sabrina Rebello, the latest data reflect insights from over 800 individuals with ATTR amyloidosis, including both the hereditary (ATTRv) and wild-type (ATTRwt) forms. Despite progress in some areas, many patients still face long delays before diagnosis — averaging 5.2 years for ATTRv and 3.5 years for ATTRwt in 2024.
“We need faster diagnoses, better-known specialist support, broader treatment access and more inclusion for the rare subtypes,” Rebello said.
Read more about ATTR-CM testing and diagnosis
The survey found a growing shift away from specialized amyloidosis centers, with more care being delivered by local providers such as hematologists, oncologists and cardiologists. Patients generally reported high satisfaction with local care, but also expressed a strong need for more information about support groups and community resources. ARC emphasized the need to equip more providers with tools and training to diagnose and manage ATTR-CM earlier and more accurately.
Survey responses also confirmed that while carpal tunnel syndrome is increasingly recognized as an early symptom, pathways to diagnosis still vary by subtype and gender. Wild-type ATTR tends to affect older white men, with cardiologists often making the diagnosis. Hereditary ATTR, which has a more balanced gender split, is more likely diagnosed by a neurologist.
Across both subtypes, patients said their top goals were living longer, improving symptoms and staying active with family, friends and work.
Importantly, the survey also captured caregiver perspectives, revealing high levels of emotional and logistical stress. Many caregivers reported reduced work hours or early retirement, and called for expanded access to mental health care, flexible scheduling and transportation support.
By using these real-world insights in advocacy, scientific presentations and outreach, ARC aims to drive faster, more accurate diagnoses, better treatment options and stronger support for every person affected by amyloidosis and ATTR-CM.
“Once we start getting more publications and building that body of evidence, then we’ll start seeing some of these things incorporated into newer trials,” Rebello explained.
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