National Initiative Aims to Improve Diagnosis and Care for Underrecognized Heart Condition

The American Heart Association has initiated a nationwide quality improvement effort to strengthen the system of care for people living with transthyretin amyloid cardiomyopathy, a serious and often underdiagnosed condition. ATTR-CM is caused by abnormal protein buildup that prevents the left ventricle from relaxing and filling properly, impairing the heart’s ability to pump blood. When left untreated, the disease can lead to heart failure and significantly shorten life expectancy.

Early recognition and diagnosis of ATTR-CM is critical, as timely care gives patients access to treatments that can extend survival, preserve physical function and maintain quality of life. The three-year effort brings together a cohort of 10 multidisciplinary health care teams from across the country in a learning collaborative designed to better understand and improve ATTR-CM care pathways. The initiative focuses on the full patient journey – from diagnosis and referral through treatment and follow-up – with the goal of identifying successful, replicable models of care that can drive change nationwide.

‘ATTR-CM is a life-threatening condition that is too often recognized late, when current disease modifying therapy is less effective,’ said Mat Maurer, M.D., volunteer member of the American Heart Association’s ATTR Amyloidosis Strategic Advisory Group and professor of medicine at Columbia University Irving Medical Center. ‘By bringing multidisciplinary teams together to examine the full patient journey, this new initiative is helping identify practical, scalable approaches that can support earlier recognition, more coordinated care and better outcomes for people living with this disease.’

Through shared learning and collaboration, participating sites will work to gain insights into current ATTR-CM practice pathways and amplify approaches that improve coordination of care, support earlier identification and strengthen long-term management. The quality improvement initiative, financially supported by Alnylam, is designed to improve early diagnosis and coordination of care, ultimately enhancing the patient experience. As awareness of ATTR-CM grows and treatment options continue to advance, patients increasingly need coordinated, specialist-led care, though building and sustaining these multidisciplinary systems remains challenging for many health care centers.

‘As awareness of ATTR-CM grows and treatment options continue to advance, it is essential that patients have access to well-coordinated, specialist-led care,’ said Sameer Bansilal, M.D., M.S., cardiologist and vice president, Global TTR Medical lead at Alnylam Pharmaceuticals. ‘We are proud to support the American Heart Association’s new ATTR-CM initiative and its focus on understanding gaps in care, sharing successful models and strengthening systems that can improve the experience and outcomes for people affected by this devastating disease.’ For more information about the ATTR-CM initiative and to see a list of participating health care centers, visit heart.org/ATTRCMDiscovery.

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