ArticleClinical Medicine Insights. Cardiology2021
Best Practices in Specialized Amyloidosis Centers in the United States: A Survey of Cardiologists, Nurses, Patients, and Patient Advocates.
Article in Clinical Medicine Insights. Cardiology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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Who cites it
16 citing papers in PubMed, 26 citations in OpenAlex.
- Screening Criteria for Amyloidosis Biopsy Testing during Carpal Tunnel Release in Community Hospitals: Evaluation and Application.Journal of wrist surgery · 2026Article
- Tissue Screening and Diagnosis of Transthyretin Amyloid Cardiomyopathy.Reviews in cardiovascular medicine · 2026Review
- The patient's voice: real-world experiences of a transthyretin amyloidosis focus group.BMC health services research · 2026Article
- Trends and disparities in amyloidosis and cardiovascular disease mortality: a population-based retrospective study in the United States (1999-2020).BMC cardiovascular disorders · 2026Article
- Best Practices and Key Barriers for Amyloidosis Patient Care at US Specialized Amyloidosis Centers: An Analysis by ARC-ASPIRE.Clinical Medicine Insights. Cardiology · 2026Article
- Real-World Characteristics and Treatment Patterns of Patients With Transthyretin Amyloid Cardiomyopathy: Protocol for a Multicountry Disease Registry Study.JMIR research protocols · 2025Article
- Integrated specialty care for amyloidosis: a scoping review using the Consolidated Framework for Implementation Research.BMC health services research · 2025Article
- Patient-reported satisfaction with telemedicine in light chain (AL) amyloidosis care.Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis · 2024Article
- Current Therapies and Future Horizons in Cardiac Amyloidosis Treatment.Current heart failure reports · 2024Review
- Establishment of a Comprehensive Cardiac Amyloidosis Center in a Community Hospital Setting.Reviews in cardiovascular medicine · 2024Review
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- Leveraging stories of cardiac amyloidosis patients of African ancestry or descent to support patient-derived data elements for efficient diagnosis and treatment.Frontiers in pharmacology · 2023Article
- World Heart Federation Consensus on Transthyretin Amyloidosis Cardiomyopathy (ATTR-CM).Global heart · 2023Review
- Comprehensive approach to cardiac amyloidosis care: considerations in starting an amyloidosis program.Heart failure reviews · 2022Review
- A Case of Early Hereditary Transthyretin Amyloid Cardiomyopathy Recognition With Genetic Screening: A Case Report.Journal of primary care & community healthArticle
Corrections and comments
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Authors and funding
8 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBecause transthyretin amyloid cardiomyopathy (ATTR-CM) poses unique diagnostic and therapeutic challenges, referral of patients with known or suspected disease to specialized amyloidosis centers is recommended. These centers have developed strategic practices to provide multidisciplinary comprehensive care, but their best practices have not yet been well studied as a group.
methodsA qualitative survey was conducted by telephone/email from October 2019 to February 2020 among eligible healthcare providers with experience in the management of ATTR-CM at US amyloidosis centers, patients with ATTR-CM treated at amyloidosis centers, and patient advocates from amyloidosis patient support groups.
resultsFifteen cardiologists and 9 nurse practitioners/nurses from 15 selected amyloidosis centers participated in the survey, with 16 patients and 4 patient advocates. Among participating healthcare providers, the most frequently cited center best practices were diagnostic capability, multidisciplinary care, and time spent on patient care; the greatest challenges involved coordination of patient care. Patients described the "ideal" amyloidosis program as one that provides physicians with expertise in ATTR-CM, sufficient time with patients, comprehensive patient care, and opportunities to participate in research/clinical trials. The majority of centers host patient support group meetings, and patient advocacy groups provide support for centers with physician/patient education and research.
conclusionsAmyloidosis centers offer comprehensive care based on staff expertise in ATTR-CM, a multidisciplinary approach, advanced diagnostics, and time dedicated to patient care and education. Raising awareness of amyloidosis centers' best practices among healthcare providers can reinforce the benefits of early referral and comprehensive care for patients with ATTR-CM.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.