education - scientific literature & patient education texts | oneAMYLOIDOSISvoice

How to Prepare Your Family in Case COVID-19 Spreads in Your Community – CDC

Centers for Disease Control and Prevention (CDC)
Year: 2020

Here is what you can do to prepare your family in case COVID-19 spreads in your community.   Find Local Information Know where to find local information on COVID-19 and local trends of COVID-19 cases.   Know the Signs & Symptoms Know the signs and symptoms of COVID-19 and what to do if symptomatic:   • St...

How to Talk to Your Kids About Coronavirus

Public Broadcasting Service (PBS)
Year: 2020

Earlier this week, I overheard my kids engaged in a round of “I heard” and “Did you know?” while they were getting ready for bed. “I heard that Margaret’s dad has it,” said my six-year-old. “Did you know that it’s the worst sickness ever?” added my eight-year-old.   Neither statement is accurate, but they were revealing: I had thought my initial conversations with my kids about COVID-19 had been g...

Managing Stress and Anxiety Amidst COVID-19 – CDC

Centers for Disease Control and Prevention (CDC)
Year: 2020

The outbreak of coronavirus disease 2019 (COVID-19) may be stressful for people. Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. Coping with stress will make you, the people you care about, and your community stronger.   Everyone reacts differently to stressful situations. How you respond to the outbreak can depend on your background, the things that make you dif...

Expanded Access to an Investigational Medical Product

Food and Drug Administration
Year: 2019

Sometimes called “compassionate use”, expanded access is a potential pathway for a patient with a serious or life-threatening disease or condition to try an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when there are no comparable or satisfactory therapies available.   Investigational medical products are investigational drugs, biologics or medical d...

Natural and Complementary Therapies for Amyloidosis

Year: 2018

To prevent the progression of amyloidosis and the damage it can cause, your doctor should recommend a treatment plan that includes certain medications or procedures. Still, treatment for amyloidosis doesn’t have to stop with conventional medicine.   There are ways to ease your symptoms and improve your well-being with natural and complementary therapies. Here are eight to get you started.  ...

Glossary of Common Site Terms

U.S. National Library of Medicine,

This glossary will help you understand words and phrases frequently used on Many of these words are also used by clinical researchers and others in the same or a similar manner. But the definitions below are provided to explain content on only.  Accepts Healthy Volunteers A type of eligibility criteria that indicates whether people who do not have...

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Top 10 Things To Know When Performing Cardiac Imaging to Assess Cardiac Amyloidosis

American College of Cardiology
Year: 2020

Amyloidoses are protein-folding disorders in which more than one organ is infiltrated by proteinaceous deposits known as amyloid. The deposits are derived from one of several amyloidogenic precursor proteins, and the prognosis of the disease is determined both by the organ(s) involved and the type of amyloid. Amyloid involvement of the heart, cardiac amyloidosis, carries the worst prognosis of any involved organ, and light-chain (AL) amyloid...

Emerging Therapeutics for the Treatment of Light Chain and Transthyretin Amyloidosis

JACC. Basic to Translational Science
Year: 2019

Cardiac amyloidosis is a restrictive cardiomyopathy that results from the deposition of misfolded light chain or transthyretin proteins, most commonly, in cardiac tissue. Traditionally, treatment options for light chain (AL) and transthyretin (ATTR) amyloidosis have been limited. However, there are now multiple novel therapeutics in development and several therapeutics recently approved that promise to revolutionize clinical management of AL and...

How to Image Cardiac Amyloidosis: A Practical Approach

JACC. Cardiovascular Imaging
Year: 2019

Cardiac amyloidosis (CA) is one of the most rapidly progressive forms of heart disease, with a median survival from diagnosis, if untreated, ranging from <6 months for light chain amyloidosis to 3 to 5 years for transthyretin amyloidosis. Early diagnosis and accurate typing of CA are necessary for optimal management of these patients. Emerging novel disease modifying therapies increase the urgency to diagnose CA at an early stage an...

Clinical Presentation, Diagnosis and Treatment of TTR Amyloidosis

Journal of Neuromuscular Diseases
Year: 2019

Systemic amyloidosis can be hereditary or acquired with autosomal dominant mutations in the transthyretin gene (TTR) being the most common cause of hereditary amyloidosis. ATTRm amyloidosis is a multi-system disorder with cardiovascular, peripheral and autonomic nerve involvement that can be difficult to diagnose due to phenotypic heterogeneity. This review will focus on the neuropathic manifestations of ATTRm, the genotype-phe...

Impact of Genetic Testing in Transthyretin (ATTR) Cardiac Amyloidosis

Current Heart Failure Reports
Year: 2019

Purpose of Review The review’s main focus centers on the genetics of hereditary cardiac amyloidosis, highlighting the opportunities and challenges posed by the widespread availability of genetic screening and diagnostic cardiac imaging.   Recent Findings Advancements in cardiac imaging, heightened awareness of the ATTR amyloidosis diagnosis, and greater access...

MAGE Genes: Prognostic Indicators in AL Amyloidosis Patients

Journal of Cellular and Molecular Medicine
Year: 2019

A high frequency of MAGE-CT (cancer testis) antigens is expressed in Multiple Myeloma (MM) patients; however, in other plasma cell dyscrasias, their potential function remains unclear. We measured the expression of MAGE-CT genes (MAGE-C1/CT7, MAGE-A3, MAGE-C2/CT10) in 105 newly diagnosed amyloid light-chain (AL) amyloidosis patients between June 2013 and January 2018 at Peking University People’s Hospital using real-time quantitative po...

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Guidance for Industry AL Amyloidosis — Developing Drugs for Treatment

Amyloidosis Research Consortium
Year: 2016

The purpose of this guidance is to assist sponsors in the clinical development of medical products (ie, drugs and therapeutic biological products for humans) for the treatment of patients with immunoglobulin light chain (AL) amyloidosis. Transthyretin (ATTR) amyloidosis will be addressed in a separate guidance document.   This guidance is a result of collaboration between the US Food and Drug Administration (F...

Standardization of 99m technetium Pyrophosphate Imaging Methodology to Diagnose TTR Cardiac Amyloidosis

Journal of Nuclear Cardiology
Year: 2018

Background: Technetium pyrophosphate (99mTc-PYP) imaging to diagnose transthyretin cardiac amyloidosis (ATTR-CA) has been increasingly utilized. The objective of this study is to provide a standardized 99mTc-PYP imaging protocol to diagnose ATTR-CA. Methods: 104 scans from 45 subjects with biopsy-proven ATTR-CA or light-chain cardiac amyloidosis (AL) were assessed. Multiple scans were o...

Management of Systemic AL Amyloidosis: Recommendations of the Myeloma Foundation of Australia Medical and Scientific Advisory Group

Internal Medicine Journal
Year: 2015

Systemic AL amyloidosis is a plasma cell dyscrasia with a characteristic clinical phenotype caused by multi-organ deposition of an amyloidogenic monoclonal protein. This condition poses a unique management challenge due to the complexity of the clinical presentation and the narrow therapeutic window of available therapies. Improved appreciation of the need for risk stratification, standardised use of sensitive laboratory testing for monitoring...

Subcutaneous Daratumumab (DARA SC) Plus Cyclophosphamide, Bortezomib, and Dexamethasone (Cybord) in Patients (Pts) With Newly Diagnosed Amyloid Light Chain (AL) Amyloidosis: Safety Run-in Results of Andromeda

American Society of Clinical Oncology
Year: 2018

Background: Systemic AL amyloidosis is characterized by disposition of insoluble amyloid fibrils into tissues and organs via clonal expansion of CD38+ plasma cells. The safety run-in of DARA SC + CyBorD in ANDROMEDA (NCT03201965) is presented. Methods: Eligible pts had >=1 involved organs, ECOG score =<2, absolute neutrophil count >=1.0 × 109/L; hemoglobin >=8.0 g/dL; plate...

Daratumumab-Based Therapies in Patients With AL Amyloidosis

American Society of Clinical Oncology
Year: 2018

Background: Treatment options for patients (pts) with relapsed/refractory (RR) AL amyloidosis are limited. Daratumumab (dara) has been approved as monotherapy (DMT) or combination therapy (DCT) for multiple myeloma (MM). Data for dara-based therapy (DBT) in AL are sparse. Methods: We studied pts with RR AL without coexisting MM seen at Mayo Clinic from 11/2015 to 02/2018 & treated w...

Implanted Cardiac Defibrillator and Pacemaker Lead Function in Patient With Cardiac Amyloidosis

Journal of the American College of Cardiology
Year: 2017

Introduction:  Cardiac amyloidosis (CA) results from myocardial infiltration of amyloid proteins that leads to restrictive cardiomyopathy, heart failure, and conduction abnormalities. Low QRS voltage on surface electrocardiography is characteristic of CA, raising concern for poor R-wave sensing and elevated pacing and defibrillation thresholds in CA patients with Implantable Cardioverter Defibrillator (ICD) or pacemak...

TTR Mutations

Boston University School of Medicine: Mass Spectrometry Resource

Sequence Mutations of Human Transthyretin
(reported through 8/2/2001)

Find A Genetic Counselor

National Society of Genetic Counselors

The Find a Genetic Counselor directory offers access to over 3,300 genetic counselors (US and Canada). Check with your insurance company to verify coverage of genetic counseling, testing and authorized providers. For more information, visit To start your search, tell us how you would prefer to meet with a genetic counselor. -Searches of the “In Person” directory will show genetic counselo...

Hereditary Transthyretin Amyloidosis

Year: 2001; 2018

Clinical characteristics. Hereditary transthyretin (ATTR) amyloidosis is characterized by a slowly progressive peripheral sensorimotor and/or autonomic neuropathy as well as non-neuropathic changes of cardiomyopathy, nephropathy, vitreous opacities, and CNS amyloidosis. The disease usually begins in the third to fifth decade in persons from endemic foci in Portugal and Japan; onset is later in persons from other areas. Typically, sensor...

Amyloidosis: What Every Physician Needs to Know

Decision Support in Medicine

Amyloidosis is a term for diseases caused by extracellular deposition of protein fibrils. The accepted nomenclature is “AX”, “A” for amyloidosis, and “X” indicating the precursor protein. If the precursor is an immunoglobulin light chain, the disease is termed AL, the most common of the systemic amyloidoses. If it is familial (AF), the precursor protein can be an inherited mutant serum protein such as transthyretin, abbreviated A...

Changing the Perspective on Cardiac Amyloidosis: From Missed and Undiagnosed, to Common and Treatable

Healio Education Lab - Cardiology
Year: 2019

Cardiac Amyloidosis is a rare systemic disorder characterized by proteins that possess abnormal conformational features leading them to aggregate and infiltrate tissues in the form of amyloid fibrils resulting in damage to the heart and Heart Failure. Non-specific presenting symptoms and failure to recognize early signs of amyloid heart disease often lead to delay in diagnosis of Cardiac Amyloidosis. Timely diagnosis is critical to managing...

Amyloidosis Diagnosis and Treatment App for Healthcare Professionals

Amyloidosis Research Consortium

Our Amyloidosis Clinical Resources App has been created to provide clinically relevant information that offers healthcare professionals a brief yet practical disease overview and interactive tools which can lead to earlier diagnosis and therapeutic intervention.   Highlights Include: • Disease types and descriptions. • Clinical presentations. • Signs and symp...

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