Amyloidosis Program Toolkit

Amyloidosis care is multidisciplinary by nature. No single specialty can manage it well alone. The first step in building a program is mapping out who inside your institution will be part of the team, starting with the essentials and adding depth as resources allow.

Minimum Requirements:

• Cardiology
• Hematology/Oncology
• Neurology
• Radiology/Nuclear Cardiology

For a More Comprehensive Program:

• Cardiology, including heart failure, electrophysiology, and structural heart
• Hematology/Oncology
• Radiology and Nuclear Cardiology
• Neurology
• Nephrology
• Gastroenterology
• Orthopedics
• Genetic Counseling: Heart failure and transplant services; Specialty pharmacy with 340B program access

Physicians alone can’t sustain an amyloidosis program. Patients need ongoing education, coordination, and follow-up testing that nurses and advanced practice providers are well positioned to deliver. The right support staff is often the difference between a program that scales and one that burns out its clinicians.

• Advanced practice providers (NPs and PAs) to support patient visits, education, follow-up testing, and care coordination
• Nursing support to assist with patient visits, education, follow up testing, and care coordination
• A defined plan for recruiting and retaining these roles as the program grows

Most amyloidosis cases are missed because signs and symptoms were missed or misdiagnosed. Building screening into existing clinical workflows, from heart failure and EP clinics to orthopedic referrals, is how programs shift from reactive to proactive diagnosis.

• Screen at risk populations: HFpEF, HFrEF, atrial fibrillation, and aortic stenosis
• HF and cardiology clinics, EP clinics, inpatient HF and cardiology service. Partner with internal medicine and family medicine residencies
• Coordinate with the structural heart team on TAVR evaluations
• Work with orthopedic colleagues to send surgical specimens for pathology review, enabling earlier identification of extra-cardiac disease
• Explore AI-based tools to support screening and diagnostic decision-making

Accurate diagnosis is the foundation of everything that follows. Amyloidosis subtyping drives treatment choice. A strong program needs reliable access to the right labs, imaging, and biopsy capabilities, along with the expertise to interpret them.

• Labs: SPEP/UPEP with immunofixation and cardiac biomarkers (NT-ProBNP or BNP and troponin)
• PYP/HDP/DPD: need to ensure proper protocols are followed including SPECT/CT
• Echo: ability to perform good quality echo, strain imaging may be helpful
• MRI: ability to perform cardiac MRI: including LGE and ECV
• Order sets may be helpful to standardize approach to workup
• Ability to perform and interpret biopsy (endomyocardial, fat pad, bone marrow). Ability to send the specimen for confirmation with Mass Spect
• Genetic testing:
  • Sponsored genetic testing provided by Prevention Genetics through partnership with Alnylam and AstraZeneca
  • TTR only gene vs comprehensive cardiomyopathy or comprehensive neurology panel

Patients absorb a lot at diagnosis, and most of it doesn’t stick the first time. Good programs connect patients with educational materials, support communities, and peer networks so they can learn at their own pace and feel less alone on the journey.

• Contact amyloidosis patient advocacy groups such as the Amyloidosis Research Consortium, Amyloidosis Support Groups, Amyloidosis Foundation, Mackenzie’s Mission for information on a range of educational materials, resources and support opportunities for your patients.  Reach out to support@arci.org for more details.
• Pharmaceutical companies can also offer assistance for patient resources, nursing support and education information. Reach out to your local MSL or salesperson for more information.