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Scientific literature and patient education texts

149 resources available:

Non-Liver Transplant Therapies for ATTR Amyloidosis 2022

Amyloidosis Support Groups Year: 2022
Non-Liver Transplant Therapies for ATTR Amyloidosis 2022 lists different medications and therapies for treating ATTR Amyloidosis, a genetic disorder characterized by abnormal deposits of a protein called transthyretin (TTR). The table is divided into 3 categories: Tetramer Stabilizers, RNA-directed Therapies, and Gene Editing Therapies. Some of the therapies listed, such as Patisiran, Tafamidis, Inotersen, and Vutrisiran have FDA approval, whi...

Therapy for AL Amyloidosis 2022

Amyloidosis Support Groups Year: 2022
Antibodies (Plasma Cells) Therapy for AL Amyloidosis 2022 lists different medications and therapies for treating AL amyloidosis, a blood disorder characterized by abnormal deposits of a protein called immunoglobulin light chain in various organs and tissues of the body. The table is divided into several categories: Alkylating Agents, Proteasome Inhibitors, Steroids, IMiDs, Fibril-Directed Agents, and Light Chain Stabilizers. Some of the therap...

Stay Safe and Healthy in Winter

National Center for Environmental Health

Winter storms and cold temperatures can be dangerous. Stay safe and healthy by planning ahead. Prepare your home and vehicles. Prepare for power outages and outdoor activity. Check on older adults.

Although winter comes as no surprise, many of us may not be ready for its arrival. If you are prepared for the hazards of winter, you are more likely to stay safe and healthy when temperatures start to fall.

CRISPR’s Quest to Slay Donegal Amy

Ars Technica Year: 2022
In the 5th century, in early medieval Ireland, Conall Gulban, an Irish king, gave his name to an area of land at the northwest tip of the Irish coast. His kingdom was called Tír Chonall, the “land of Conall”—or, today, Donegal. Somewhere along the king’s descendant line, known as Cenél Conaill or “kindred of Conall,” it’s thought that a mistake arose in a scion’s genome—specifically, a mutation of a gene responsible...

Winter Weather Wheelchair Tips

United Spinal Association

Winter weather wheelchair tips are not for everyone. They’re for those wheelchair users whose destiny didn’t include a nice warm corner of the world.

Cardiac Amyloidosis – World Heart Federation

World Heart Federation Year: 2022
Amyloidosis is a group of diseases which are characterized by the build-up of abnormal deposits of amyloid fibrils. These amyloid fibrils, composed of misfolded proteins, build up in organs throughout the body. Over time, these amyloid deposits may cause affected organs to stop working properly, which can eventually lead to organ failure. The two most common types of amyloidosis that affect the heart are light chain amyloidosis (AL) an...
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210 resources available:

Localized Amyloidosis: A Diagnostic Pitfall in Breast Pathology

Pathology, Research and Practice Year: 2019
Amyloidosis is characterized by extracellular deposition of insoluble protein fibrils in a beta-pleated sheet configuration. Breast amyloidosis is a rare entity which has previously been reported to present with localized involvement, or as a late manifestation of systemic amyloidosis. However, descriptions of the clinicopathologic features of localized breast amyloidosis remain limited. A retrospective search for breast amyloidosis diagnosed...

Breast Amyloidosis: A Case Report and Literature Review

Journal of the Belgian Society of Radiology Year: 2022
Amyloidosis is an uncommon disorder characterized by extracellular accumulation of misfolded proteins in tissues. We report a unique case of localized breast amyloidosis in an asymptomatic 56-year-old woman with systemic lupus erythematosus, presented as suspicious microcalcifications without mass on mammography. Vacuum biopsy confirmed amyloidosis, producing the typical apple-green birefringence under polarized light after staining with Congo...

Amyloidosis of the Breast: Predominantly AL Type and Over Half Have Concurrent Breast Hematologic Disorders

Modern Pathology: An Official Journal of the United States and Canadian Academy of Pathology, Inc. Year: 2013
Amyloidosis is a disorder characterized by extracellular deposition of proteins in an abnormal fibrillar configuration. Amyloidosis can be localized or systemic and may affect any organ. Breast involvement by amyloidosis has rarely been reported. In this study, we described the characteristics of 40 cases of breast amyloidosis that were reviewed at the Division of Anatomic Pathology at Mayo Clinic from 1995 to 2011. The cohort included 39 wome...

Clarification on the Definition of Complete Haematologic Response in Light-Chain (AL) Amyloidosis

Amyloid: The Official Journal of the International Society of Amyloidosis Year: 2021
The International Society of Amyloidosis (ISA) developed criteria for assessing the haematologic response to treatment in light chain (AL) amyloidosis in 2012. The criteria were identified and validated to discriminate groups with different overall survival rates based on a rigorous process. Eight hundred and sixteen patients from seven referral cent...
The term amyloidosis describes a group of rare diseases caused by protein conformation abnormalities resulting in extracellular deposition and accumulation of insoluble fibrillar aggregates. So far, 36 amyloid precursor proteins have been identified, and each one is responsible for a specific disease entity. Transthyretin amyloidosis (ATTRv) is one of the most common forms of systemic and ocular amyloidosis, due to the deposition of transthyre...
Lattice corneal dystrophy (LCD) is an inherited disorder of the eye characterized by the deposition of amyloid resulting in steadily progressive loss of vision. These deposits create linear, “lattice-like” opacities arising primarily in the central cornea, while the peripheral cornea is often spared. They are radially oriented and are accompanied by gradual, superficial opacification of the cornea. Recurrent epithelial erosions are often p...
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11 resources available:
Amyloid light chain (AL) amyloidosis is among the more common and more severe of the amyloidoses usually involving the slow proliferation of a bone-marrow-residing plasma cell (PC) clone and the secretion of unstable immunoglobulin-free light chains (FLC) that infiltrate peripheral tissues and result in detrimental end-organ damage. Disease presentation is rather vague, and the hallmark of treatment is early diagnosis before irreversible end-o...

Management of Transthyretin Amyloidosis

Swiss Medical Weekly Year: 2021
These guidelines were written after an extensive literature search using MedLine publications from January 1980 to April 2021, under the terms “ATTR” AND “transthyretin” AND “amyloidosis”. Only full articles in English were considered. Following the literature search and review, the steering committee developed a summary of relevant statements that were evaluated by all the participants. Consensus was established using online, sing...

Guidelines for High Dose Chemotherapy and Stem Cell Transplantation for Systemic AL Amyloidosis: EHA-ISA Working Group Guidelines

Amyloid: The Official Journal of the International Society of Amyloidosis Year: 2021
AL amyloidosis is a systemic amyloidosis and is associated with an underlying plasma cell dyscrasia. High dose intravenous melphalan and autologous stem cell transplantation was developed for the treatment of AL amyloidosis in the early 1990s and was prompted by its success in multiple myeloma. This application has evolved significantly over the past three decades. These guidelines provide a comprehensive assessment of eligibility criteria, st...

Guidelines and New Directions in the Therapy and Monitoring of ATTRv Amyloidosis

Amyloid: The Official Journal of the International Society of Amyloidosis Year: 2022
The recent approval of three drugs for the treatment of amyloid transthyretin (ATTR) amyloidosis, both hereditary and wild-type, has opened a new era in the care of these diseases. ATTR amyloidosis is embedded in its pathophysiology, and the drugs target critical steps of the amyloid cascade. In addition to liver transplant, which removes the pathogenic variants, the introduction of gene silencers has allowed the suppression of both wild type...
Adopting simple, healthy habits is one of the most influential factors in developing a balanced lifestyle. Nutrition affects overall physical and mental health and gains further importance when suffering from a disease. Promoting good nutrition may improve the consequences that illness or medication has on our bodies.   Food is an art in our culture. We can look after ourselves and play a socially active role around...
Cardiac amyloidosis is a form of restrictive infiltrative cardiomyopathy that confers significant mortality. Due to the relative rarity of cardiac amyloidosis, clinical and diagnostic expertise in the recognition and evaluation of individuals with suspected amyloidosis is mostly limited to a few expert centers. Electrocardiography, echocardiography, and radionuclide imaging have been used for the evaluation of cardiac amyloidosis for over 40...
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6 resources available:
Background  Amyloidosis is a rare, systemic disease that is characterized by a variable pattern of nonspecific symptoms and affected organs. These characteristics of amyloidosis are common among rare diseases and make them difficult to diagnose and treat. The 2 main forms of cardiac amyloidosis are light-chain (AL) amyloidosis and transthyretin (ATTR) amyloidosis. One way to improve diagnosis is to increase awareness...
Background  All types of amyloidosis are rare, progressive, and potentially fatal disorders that are difficult to diagnose and treat.  Correct diagnosis of amyloidosis is often delayed due to the nonspecific nature of symptoms and misdiagnoses leading to delays in treatment initiation. This delay results in considerable medical and financial burden on patients and their caregivers. While standardized quality-of-life...
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...
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...
14 resources available:
The Nomenclature Committee of the International Society of Amyloidosis met at the XVIII International Symposium on Amyloidosis in September and virtually in October 2022, with discussions resulting in this upgraded nomenclature recommendation. The nomenclature principles remain unchanged, but there is an ongoing discussion regarding the importance an...

Expert Analysis and Opinion—Understanding Cardiac Amyloidosis

American College of Cardiology Foundation Year: 2021
Cardiac amyloidosis (CA) is a protein-folding disorder nearly exclusively caused by misfolded amyloid transthyretin (ATTR) and amyloid light chain (AL) proteins. • Name derives from Latin “amylum” (starch like). • Nomenclature: “A” for amyloid, followed by precursor protein abbreviation (e.g., AL = amyloid light chain amyloidosis). • Histologic diagnosis: Aggregates of beta-sheets that sta...

Amyloid Nomenclature 2020: Update and Recommendations by the International Society of Amyloidosis (ISA) Nomenclature Committee

Amyloid: The International Journal of Experimental and Clinical Investigation Year: 2020
The ISA Nomenclature Committee met electronically before and directly after the XVII ISA International Symposium on Amyloidosis, which, unfortunately, had to be virtual in September 2020 due to the ongoing COVID-19 pandemic instead of a planned meeting in Tarragona in March. In addition to confirmation of basic nomenclature, several additional concepts were discussed, which are used in scientific amyloid literature. Among such concepts are c...
Consider genetic testing and counseling for your patients; Alnylam Act® provides one option for eligible individuals.   What Is Alnylam Act®? Alnylam Act® is a sponsored, no-charge, third-party genetic testing and counseling program for patients with a family history or suspected diagnosis of hATTR amyloidosis. The Alnylam Act® program was developed to reduce barriers to genetic testi...

Lay Summary of “TTR Gene Silencing Therapy in Post Liver Transplant Hereditary ATTR Amyloidosis Patients”

Amyloid: The International Journal of Experimental and Clinical Investigation Year: 2020
This is an article that was recently published in the journal “Amyloid” (June 2020). Researchers from different amyloid clinics across the US reported on their experience treating patients with hATTR amyloidosis, who already underwent liver transplant, with TTR “knock down” therapy.    The rationale is as follows: 1) some people with hATTR who undergo liver transplant continue to have disease pr...

TTR Mutations

Boston University School of Medicine: Mass Spectrometry Resource Year: N/A

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

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