ARC Publications

 ARC's library contains publications and articles published in peer reviewed journals on the latest ARC research.

ARC Publications

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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. ARC is requesting that the FDA issue a draft guidance incorporating the information in this externally-developed draft guidance.

The Voice of the Patient

Summary report resulting from the first Externally-led Patient Focused Drug Development meeting, a parallel effort to the FDA's Patient focused Drug Development Initiative.

Rationale, Application, and Clinical Qualification for Use of 



Submitted to FDA December 2016

Published June 2016

Published October 2015


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Rationale, Application and Clinical Qualification for NT-proBNP as a Surrogate End Point in Pivotal Clinical Trials in Patients with AL Amyloidosis

Published: Leukemia July 2016

Author: G Merlini et al.

Light Chain Amyloidosis Patient Experience Survey from the Amyloidosis Research Consortium


Published: Advances in Therapy 2015

Author: I Lousada et al.


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Amyloidosis Research Consortium Cardiac Amyloidosis Survey: Results From Patients With AL Amyloidosis and Their Caregivers

European Hematology Association          2017

Recommendations From the Amyloidosis Research Consortium Educational Roundtable at the American College of Cardiology Annual Meeting, April 1, 2016

International Symposium of Amyloidosis 2016

Patient Experience With Light Chain Amyloidosis: A Survey From the Amyloidosis Research  Consortium


Heart Failure Society of America             2015


Patient Experience With Hereditary and Wild-type Amyloidosis: A Survey from the Amyloidosis Research Consortium


European Congress on Hereditary Amyloidosis 2015