Diagnostic cost depends on whether ATTRv is already molecularly confirmed
Patients who already have a clearly pathogenic TTR result and consistent phenotype may only need expert review and staging. If the diagnosis is uncertain, costs can include genetic confirmation, amyloid typing, evaluation for AL amyloidosis and other causes of neuropathy or cardiomyopathy, and additional tissue or imaging studies.
Neurological staging changes both treatment eligibility and cost
Current EU labels for several disease-modifying therapies specify stage 1 or stage 2 polyneuropathy. Neurological examination, nerve-conduction studies, functional assessment and autonomic review may therefore be required before a center can quote or plan therapy.
Cardiac staging can add a separate diagnostic pathway
ATTRv frequently has a mixed neuropathic-cardiac phenotype. ECG, echocardiography, biomarkers, cardiac MRI and selected scintigraphy can add cost but may materially change therapy and prognosis, particularly when cardiomyopathy is clinically significant.
Drug acquisition and administration differ substantially
Patisiran requires recurring intravenous infusion and premedication; vutrisiran and eplontersen use subcutaneous administration schedules; tafamidis is oral. These differences affect hospital-day costs, travel frequency, home-country continuity and monitoring. A price comparison should therefore include delivery logistics rather than drug price alone.
A 2026 plan should account for changing availability
EMA reports that Tegsedi (inotersen) will become unavailable in the EU by the end of 2026 because the manufacturer is permanently discontinuing supply for commercial reasons. Patients using inotersen may therefore need a supervised transition plan rather than a quote based on indefinite continuation.
Genetic counseling and family testing are separate services
Once a pathogenic TTR variant is identified, relatives may request predictive testing. That process should include genetic counseling and is distinct from the affected patient's treatment episode, so it should not be assumed to be included in a neurology package.
Send complete records before requesting an estimate
A center can give a more realistic estimate after reviewing the molecular diagnosis and organ involvement.
- Complete TTR genetic report
- Neurology examination and nerve-conduction/EMG reports
- Polyneuropathy functional stage and autonomic symptom history
- Cardiology reports, ECG, echo, biomarkers, MRI/scintigraphy if available
- Biopsy and amyloid-typing report if performed
- Current and previous ATTR disease-modifying therapy
- Vitamin A supplementation and drug-specific safety monitoring
- Kidney/liver tests and blood count
- Family history and genetic-counseling records
- Exact request: diagnosis confirmation, treatment selection, therapy switch, mixed cardiac review or follow-up planning
Official sources
Last source-reviewed 2026-09-02. Cost procedures and published service fees can change, so confirm current terms directly with the provider before transferring money or booking travel.
- Heidelberg Neurology Amyloidosis Clinic — Heidelberg University Hospital ↗
- Charité Amyloidosis Clinic — Charité – Universitätsmedizin Berlin ↗
- Wainzua EPAR — European Medicines Agency ↗
- Amvuttra EPAR — European Medicines Agency ↗
- Onpattro EPAR — European Medicines Agency ↗
- Vyndaqel EPAR — European Medicines Agency ↗