Physicians

ARC Diagnostic Algorithm

This quick summary of common "red flag" amyloidosis symptoms and diagnostic algorithm can help understand the steps in a traditional path to diagnosis and amyloidosis type determination. This tool should not be used to replace proper medical guidance and diagnosis, but can be helpful for understanding your journey to diagnosis.

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Tools

ARC Compass: A Newsletter for Amyloidosis Research Updates

Compass is a newsletter for amyloidosis research updates with the goal of keeping the amyloidosis community informed of ARC’s research and initiatives. The June 2021 edition focuses on the recently completed Amyloidosis Research Consortium Cardiac Amyloidosis Survey.

Publications

ARC Talks: Managing Amyloidosis during COVID-19 for Physicians

This physician webinar covers the treatment of amyloidosis patients during the COVID-19 pandemic. With guidelines from the International Society of Amyloidosis, high-risk patient considerations, an update on clinical trials, and policy changes, we cover everything HCPs need to know.

ARC Talks

ARC’s European Health Technology Assessments (HTA) Toolkit

ARC's comprehensive European Health Technology Assessments (HTA) Toolkit was produced to give information about how treatments are evaluated and approved for use in the various member state healthcare systems. The Toolkit guides patients and patient groups on how they can participate in the process to ensure that those treatments that are developed for their amyloidosis can be made available in their countries.

Publications

Expert Consensus Recommendations to Improve Diagnosis of ATTR Amyloidosis with Polyneuropathy

ARC-supported consensus best practice recommendations for the diagnosis of ATTR amyloidosis with polyneuropathy published in the Journal of Neurology, Circulation: Heart Failure.

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Publications

Amyloidosis Research Consortium Cardiac Amyloidosis Survey: An International Analysis of the Diagnostic Journey in AL and ATTR Amyloidosis

"Amyloidosis Research Consortium Cardiac Amyloidosis Survey: An International Analysis of the Diagnostic Journey in AL and ATTR Amyloidosis," was presented at the 23rd annual Heart Failure Society of America meeting from September 13-16, 2019 in Philadelphia, PA. This poster presents results from 745 patients and caregivers and highlights regional differences, changes over time, and how we can improve the diagnostic journey of amyloidosis patients.

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Publications

Expert Consensus Recommendations for the Suspicion and Diagnosis of Cardiac Transthyretin Amyloidosis

ARC-supported consensus best practices guidelines for the diagnosis of cardiac ATTR amyloidosis published in the journal of the American Heart Association, Circulation: Heart Failure.

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Publications

(99m) Technetium-Pyrophosphate Imaging for Transthyretin Cardiac Amyloidosis

These practice points from the American Society of Nuclear Cardiology (ASNC) are to identify the critical components involved in performing (99m) Tc-PYP imaging for the evaluation of cardiac transthyretin amyloidosis (ATTR).

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Publications

Contemporary Diagnosis and Risk Assessment in Transthyretin Cardiomyopathy

Presented in February 2019 by: Sharmila Dorbala, MD, MPH, FASNC; Ronald M. Witteles, MD; Mazen Hanna, MD; and Martha Grogan, MD,

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CME

State of the Art Imaging in Cardiac Amyloidosis

Presented in March 2019 by: Sharmila Dorbala, MD, MPH, FASNC; Jamieson Bourque, MD; Frederick Ruberg, MD; and Wael Jaber, MD.

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CME

Cardiac Amyloidosis Treatments Today, Emerging Treatments for Tomorrow

Presented in May 2019 by: Sharmila Dorbala, MD, MPH, FASNC; Prem Soman, MD, MASNC; Rodney Falk, MD; and Mathew Maurer, MD.

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CME

Hereditary Transthyretin Amyloidosis (hATTR): Burden of Disease and Treatment Perspectives Poster

ARC’s research on Hereditary Transthyretin Amyloidosis (hATTR): Burden of Disease and Treatment Perspectives, was presented at the XII Paulista Congress of Neurology in Brazil. The English version of the poster is translated from Portuguese, and the data can be used by the Brazilian HTA during their evaluation of new treatments for patients with hATTR neuropathy.

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Publications

Amyloidois Research Consortium Cardiac Amyloidosis Survey: Results from Patients with AL and ATTR Amyloidosis and their Caregivers

Amyloidosis Research Consortium Cardiac Amyloidosis Survey: Results from Patients with AL and ATTR Amyloidosis and their Caregivers, was presented at the XVIth International Symposium on Amyloidosis from March 26-29, 2018 in Kumamoto, Japan. This poster presents results from 699 patients and caregivers and highlights the complex and burdensome diagnostic journey in amyloidosis.

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Publications

Advancing Amyloidosis: A Research Roadmap

The white paper contains the highest priorities and a research framework for the systemic amyloidosis diseases. This consensus document was developed through a rigorous process with the participation of 71 international experts from academic, clinical, regulatory, patient advocacy, health policy, industry, and other key areas. This publication is intended to identify, improve and accelerate a drug development pathway for the systemic amyloidosis diseases.

Publications

Medscape CME & Education for Physicians

Medscape is the leading online global destination for physicians and healthcare professionals worldwide with the latest medical news and expert perspectives; drug and disease information; and professional education and CME classes specific for amyloidosis.

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CME

ARC Cardiac Amyloidosis Alert Card

This easy-to-use pocket card identifies “low voltage” EKGs in combination with ECHO images of increased ventricular mass, which are very specific for amyloid and should trigger additional testing to confirm amyloidosis.

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Tools

Diagnosing & Managing Light-Chain Amyloidosis: What the Cardiologist Needs to Know

Free CME Credits Expert presentations by: Giovanni Palladini, MD PhD and Mathew Maurer, MD

CME

Voice of the Patient Report

A comprehensive report submitted to the FDA in 2016 by ARC. This is a detailed summary of the patient testimony presented at the Patient-Focused Drug Development meeting. This report will serve a critical function in communicating to both FDA review staff and industry the improvements that patients want and hope to see in their daily lives.

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Publications

Rationale, Application and Clinical Qualification for NT-proBNP as a Surrogate End Point

Published: Leukemia, July 2016 | Author: G Merlini et al.

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Publications

Light Chain Amyloidosis Patient Experience Survey

Published: Advances in Therapy, 2015 | Author: I Lousada et al.

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Publications

ARC Cardiac Amyloidosis Survey: Results from AL Patients and Caregivers

Amyloidosis Research Consortium Cardiac Amyloidosis Survey: Results from Patients with AL Amyloidosis and Their Caregivers, was presented at the European Hematology Association (EHA) 22nd Annual Congress from June 22 - 25, 2017 in Madrid, Spain. This poster captures results from 137 AL amyloidosis patients and caregivers to help understand the difficult diagnostic journey and experiences of AL amyloidosis patients.

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Publications

Guidance for Industry AL Amyloidosis – Developing Drugs for Industry

Developing the guidance involved active participation from all stakeholder groups including patients, medical experts, academics and biopharmaceutical industry representatives. This guidance has been submitted to FDA.

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Publications

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