Raras
Buscar doenças, sintomas, genes...
Amiloidose ATTR hereditária
ORPHA:271861CID-10 · E85.1CID-11 · 5D00.20PCDT · SUSDOENÇA RARA

É uma doença genética rara que afeta vários sistemas do corpo, com início geralmente na fase adulta. Ela é caracterizada por uma neuropatia progressiva, que causa danos aos nervos que controlam a sensibilidade, o movimento e as funções automáticas do corpo, e também por uma cardiomiopatia infiltrativa, uma doença em que o músculo cardíaco é prejudicado. As manifestações nos nervos geralmente começam com a perda de sensibilidade nas mãos e pés, e progridem para problemas de movimento. A cardiomiopatia se manifesta com alterações no ritmo cardíaco e insuficiência cardíaca (quando o coração não consegue bombear sangue suficiente). A doença frequentemente também apresenta outros sinais e sintomas devido ao envolvimento de órgãos como os olhos, rins, o sistema nervoso central (cérebro e medula espinhal) e o aparelho digestivo.

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Introdução

O que você precisa saber de cara

📋

É uma doença genética rara que afeta vários sistemas do corpo, com início geralmente na fase adulta. Ela é caracterizada por uma neuropatia progressiva, que causa danos aos nervos que controlam a sensibilidade, o movimento e as funções automáticas do corpo, e também por uma cardiomiopatia infiltrativa, uma doença em que o músculo cardíaco é prejudicado. As manifestações nos nervos geralmente começam com a perda de sensibilidade nas mãos e pés, e progridem para problemas de movimento. A cardiomiopatia se manifesta com alterações no ritmo cardíaco e insuficiência cardíaca (quando o coração não consegue bombear sangue suficiente). A doença frequentemente também apresenta outros sinais e sintomas devido ao envolvimento de órgãos como os olhos, rins, o sistema nervoso central (cérebro e medula espinhal) e o aparelho digestivo.

Pesquisas ativas
21 ensaios
127 total registrados no ClinicalTrials.gov
Publicações científicas
110 artigos
Último publicado: 2026

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
1-9 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.2222
Worldwide
Herança
Autosomal dominant
🏥
SUS: Cobertura parcialScore: 50%
PCDT disponível4 medicamentos CEAFCID-10: E85.1
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Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Partes do corpo afetadas

🧠
Neurológico
18 sintomas
❤️
Coração
15 sintomas
🫃
Digestivo
12 sintomas
🫘
Rins
10 sintomas
👁️
Olhos
10 sintomas
🩸
Sangue
5 sintomas

+ 41 sintomas em outras categorias

Características mais comuns

55%prev.
Arritmia
Frequente (79-30%)
55%prev.
Hipotensão ortostática devido a disfunção autonômica
Frequente (79-30%)
55%prev.
Nefropatia
Frequente (79-30%)
55%prev.
Ceratoconjuntivite seca
Frequente (79-30%)
55%prev.
Bloqueio cardíaco
Frequente (79-30%)
55%prev.
Cardiomiopatia restritiva
Frequente (79-30%)
124sintomas
Frequente (22)
Ocasional (14)
Sem dados (88)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 124 características clínicas mais associadas, ordenadas por frequência.

ArritmiaArrhythmia
Frequente (79-30%)55%
Hipotensão ortostática devido a disfunção autonômicaOrthostatic hypotension due to autonomic dysfunction
Frequente (79-30%)55%
NefropatiaNephropathy
Frequente (79-30%)55%
Ceratoconjuntivite secaKeratoconjunctivitis sicca
Frequente (79-30%)55%
Bloqueio cardíacoHeart block
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico110PubMed
Últimos 10 anos103publicações
Pico202318 papers
Linha do tempo
2026Hoje · 2026🧪 2006Primeiro ensaio clínico📈 2023Ano de pico
Publicações por ano (últimos 10 anos)

Encontrou um erro ou informação desatualizada? Sugira uma correção →

Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

4 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant.

APOA1Apolipoprotein A-IDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Participates in the reverse transport of cholesterol from tissues to the liver for excretion by promoting cholesterol efflux from tissues and by acting as a cofactor for the lecithin cholesterol acyltransferase (LCAT). As part of the SPAP complex, activates spermatozoa motility

LOCALIZAÇÃO

Secreted

VIAS BIOLÓGICAS (2)
Post-translational protein phosphorylationRegulation of Insulin-like Growth Factor (IGF) transport and uptake by Insulin-like Growth Factor Binding Proteins (IGFBPs)
MECANISMO DE DOENÇA

Hypoalphalipoproteinemia, primary, 2

An autosomal recessive disorder of lipoprotein metabolism, biochemically characterized by severe apoA-I deficiency and severely reduced serum high-density lipoprotein cholesterol (HDL-C). Affected individuals have undetectable serum levels of apoA-I, and develop xanthomas and corneal opacities. The disease is generally associated with atherosclerosis and markedly increased cardiovascular risk.

OUTRAS DOENÇAS (4)
hypoalphalipoproteinemia, primary, 2, intermediateamyloidosis, hereditary systemic 3hypoalphalipoproteinemia, primary, 2AApoAI amyloidosis
HGNC:600UniProt:P02647
LYZLysozyme CDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Lysozymes have primarily a bacteriolytic function; those in tissues and body fluids are associated with the monocyte-macrophage system and enhance the activity of immunoagents

LOCALIZAÇÃO

Secreted

VIAS BIOLÓGICAS (1)
Neutrophil degranulation
MECANISMO DE DOENÇA

Amyloidosis, hereditary systemic 5

A form of hereditary systemic amyloidosis, a disorder characterized by amyloid deposition in multiple tissues resulting in a wide clinical spectrum. AMYLD5 primarily affects the viscera, and the predominant clinical features are renal dysfunction of varying severity, and intra-abdominal bleeding. Inheritance is autosomal dominant.

EXPRESSÃO TECIDUAL(Ubíquo)
Glândula salivar
9548.0 TPM
Sangue
1687.4 TPM
Intestino delgado
304.3 TPM
Pulmão
296.5 TPM
Baço
177.4 TPM
OUTRAS DOENÇAS (2)
amyloidosis, hereditary systemic 5ALys amyloidosis
HGNC:6740UniProt:P61626
B2MBeta-2-microglobulinDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Component of the class I major histocompatibility complex (MHC). Involved in the presentation of peptide antigens to the immune system. Exogenously applied M.tuberculosis EsxA or EsxA-EsxB (or EsxA expressed in host) binds B2M and decreases its export to the cell surface (total protein levels do not change), probably leading to defects in class I antigen presentation (PubMed:25356553)

LOCALIZAÇÃO

SecretedCell surface

VIAS BIOLÓGICAS (2)
Antigen Presentation: Folding, assembly and peptide loading of class I MHCNef mediated downregulation of MHC class I complex cell surface expression
MECANISMO DE DOENÇA

Immunodeficiency 43

A disorder characterized by marked reduction in serum concentrations of immunoglobulins and albumin, and hypoproteinemia due to hypercatabolism. Patients may suffer from recurrent respiratory tract infections and severe skin disease.

OUTRAS DOENÇAS (4)
hypoproteinemia, hypercatabolicamyloidosis, hereditary systemic 6variant ABeta2M amyloidosisMHC class I deficiency
HGNC:914UniProt:P61769
TTRTransthyretinDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Thyroid hormone-binding protein. Probably transports thyroxine from the bloodstream to the brain

LOCALIZAÇÃO

SecretedCytoplasm

VIAS BIOLÓGICAS (6)
The canonical retinoid cycle in rods (twilight vision)Retinoid metabolism and transportDefective visual phototransduction due to STRA6 loss of functionNeutrophil degranulationAmyloid fiber formation
MECANISMO DE DOENÇA

Amyloidosis, hereditary systemic 1

A form of hereditary systemic amyloidosis, a disorder characterized by amyloid deposition in multiple tissues resulting in a wide clinical spectrum. AMYLD1 is an autosomal dominant form due to transthyretin amyloid deposition. Protein fibrils can form in different tissues leading to amyloid polyneuropathies, amyloidotic cardiomyopathy, carpal tunnel syndrome, systemic senile amyloidosis. The disease includes leptomeningeal amyloidosis that is characterized by primary involvement of the central nervous system. Neuropathologic examination shows amyloid in the walls of leptomeningeal vessels, in pia arachnoid, and subpial deposits. Some patients also develop vitreous amyloid deposition that leads to visual impairment (oculoleptomeningeal amyloidosis). Clinical features include seizures, stroke-like episodes, dementia, psychomotor deterioration, variable amyloid deposition in the vitreous humor.

EXPRESSÃO TECIDUAL(Tecido-específico)
Fígado
2734.3 TPM
Pâncreas
202.8 TPM
Hipocampo
43.8 TPM
Brain Spinal cord cervical c-1
26.7 TPM
Substância negra
16.7 TPM
OUTRAS DOENÇAS (6)
hyperthyroxinemia, dystransthyretinemiccarpal tunnel syndrome 1amyloidosis, hereditary systemic 1euthyroid dysprealbuminemic hyperthyroxinemia
HGNC:12405UniProt:P02766

Variantes genéticas (ClinVar)

117 variantes patogênicas registradas no ClinVar.

🧬 APOA1: NM_000039.3(APOA1):c.286T>C (p.Trp96Arg) ()
🧬 APOA1: NM_000039.3(APOA1):c.200+1G>T ()
🧬 APOA1: GRCh37/hg19 11q23.3-24.2(chr11:115887338-126148523)x3 ()
🧬 APOA1: NM_000039.3(APOA1):c.130G>T (p.Asp44Tyr) ()
🧬 APOA1: NM_000039.3(APOA1):c.66G>A (p.Trp22Ter) ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
3Fase 36
2Fase 21
1Fase 11
·Pré-clínico12
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 20 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Amiloidose ATTR hereditária

🗺️

Selecione um estado ou use sua localização para ver resultados.

Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.

Pesquisa ativa

Ensaios clínicos abertos e novidades científicas recentes

🟢 Recrutando agora

15 pesquisas recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

127 ensaios clínicos encontrados, 21 ativos.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

Timeline de publicações
104 papers (10 anos)
#1

Pittsburgh compound B positron emission tomography detects cardiomyopathy in hereditary transthyretin amyloidosis patients with negative bone scintigraphy: a pilot study.

Frontiers in nuclear medicine2026

To evaluate the effectiveness of positron emission tomography (PET) with [11C]-Pittsburgh Compound-B ([11C]PiB) for detecting transthyretin amyloid (ATTR) cardiomyopathy in patients with transthyretin gene (TTR) variants associated with reduced bone scintigraphy sensitivity, and its ability to detect brain involvement in hereditary transthyretin amyloidosis. This prospective case series included four hereditary ATTR amyloidosis patients with TTR variants associated with reduced bone scintigraphy sensitivity, and two patients with positive bone scintigraphy (one hereditary ATTR and one wild-type ATTR amyloidosis patient). All patients underwent diagnostic work-up at the Groningen Amyloidosis Centre of Expertise between April 2024 and March 2025, including [11C]PiB PET/CT. Cardiac and brain [11C]PiB uptake were assessed visually. Target-to-background ratios (TBRs) and cortical SUV ratios were calculated. TBR ≥1.09 was considered positive for ATTR cardiomyopathy and SUV ratios ≥0.7 was considered positive for brain involvement. Cardiac [11C]PiB uptake was observed in three of four hereditary ATTR amyloidosis patients despite negative bone scintigraphy. In one of four patients, there was visually equivocal radiotracer uptake, but elevated TBRs did indicate ATTR cardiomyopathy. Conversely, both hereditary ATTR and wild-type ATTR amyloidosis patients with a positive bone scintigraphy had negative or inconclusive [11C]PiB PET results. Brain uptake was observed in two asymptomatic patients, while no uptake was seen in two patients with suspected brain involvement. [11C]PiB PET could be an effective tool for detecting ATTR cardiomyopathy in patients with TTR variants associated with reduced bone scintigraphy sensitivity. However, its utility for detecting brain involvement in symptomatic hereditary ATTR patients remains uncertain.

#2

Atypical gastrointestinal presentation of hereditary transthyretin amyloidosis: a case report highlighting the diagnostic challenge.

European heart journal. Case reports2025 Dec

Hereditary transthyretin amyloidosis (ATTR) is a rare, progressive multisystem disease, often underdiagnosed due to its heterogeneous presentation. This case highlights an atypical presentation of ATTR amyloidosis dominated by gastrointestinal symptoms and the diagnostic pitfalls associated with certain genetic subtypes that may escape standard imaging modalities. We present a 68-year-old man with severe gastrointestinal symptoms and extreme weight loss, over a prolonged period. Initial investigations were inconclusive across multiple centres. A deep intestinal biopsy eventually revealed amyloid deposition, and subsequent genetic testing confirmed hereditary ATTR amyloidosis. Cardiac magnetic resonance imaging revealed myocardial involvement despite a negative 99mTc-HDP scintigraphy. The patient was referred for targeted therapy. This case underscores the need for high clinical suspicion and a multidisciplinary approach when encountering unexplained gastrointestinal and cardiac symptoms. It also demonstrates the value of the European Society of Cardiology guidelines as a reliable reference point for guiding further management when diagnostic uncertainty arises.

#3

Effects of Tafamidis Meglumine on Transient Focal Neurological Episodes and Meningeal Contrast Enhancement in Hereditary Transthyretin-Related Meningeal Amyloidosis: Report of Two Patients Carrying the c.265T>C (p.Y89H) Variant.

Brain and behavior2025 Sep

Y69H (p.Y89H) variant hereditary transthyretin (ATTRv) amyloidosis causes meningeal amyloidosis, with mutant TTR deposits localized to the leptomeninges and vitreous body. The effect of tafamidis meglumine on neurological disorders, such as the frequency of transient focal neurological episodes (TFNEs), magnetic resonance imaging (MRI) findings, and TTR levels in cerebrospinal fluid, was investigated in two patients diagnosed with Y69H ATTRv mutation. The initial symptoms in both patients were TFNEs, such as aphasia, sensory disturbance, motor paralysis, ataxia, and drop attacks. Neither epileptic drugs nor antiplatelet therapy decreased the frequency of attacks. The patients exhibited diffuse leptomeningeal enhancement on brain and spinal MRI. Tafamidis meglumine was initiated at a dose of 20 mg/day and was found to be partially effective. The TFNEs nearly resolved, and meningeal enhancement on brain MRI improved; however, the neurological deficits progressed over the following 2 years. Tafamidis had a partial effect on TFNEs and meningeal contrast enhancement on MRI; however, cerebellar ataxia and cognitive decline continued to progress.

#4

Clinical and Biochemical Characterization of Hereditary ATTR Amyloidosis Caused by a Novel Transthyretin Variant V121A (p.V141A).

International journal of molecular sciences2025 May 13

Over 150 transthyretin (TTR) mutations have been identified in hereditary transthyretin (ATTRv) amyloidosis, and new TTR variants have recently emerged. However, the pathogenicity of several new variants remains unclear, making it important to elucidate the differences between amyloidogenic and wild-type TTR. In this study, we report a novel TTR variant (V121A) identified in two unrelated amyloidosis patients aged > 60 years who developed cardiomyopathy. We evaluated the detailed biochemical features of this TTR variant to confirm its amyloidogenicity using plasma samples from these patients and recombinant TTR proteins. While the V121A TTR variant has a similar ability to assemble into a tetramer as wild-type TTR, it aggregates more readily over a wide potential hydrogen range than wild-type TTR. Additionally, the V121A variant is highly prone to dissociation and resistant to binding with known TTR tetramer stabilizers. Clinical and biochemical data suggest that this novel variant is clearly pathogenic, is highly prone to dissociation and aggregation, and is associated with the development of late-onset amyloid cardiomyopathy. Interestingly, amyloid fibril formation due to this variant may not be affected by known TTR stabilizers.

#5

Clinical Phenotype and Prognosis of Asymptomatic Patients With Transthyretin Cardiac Amyloid Infiltration.

JAMA cardiology2025 May 01

Patients with transthyretin (ATTR) cardiac amyloid infiltration are increasingly diagnosed at earlier disease stages with no heart failure (HF) symptoms and a wide range of cardiac amyloid infiltration. To characterize the clinical phenotype and natural history of asymptomatic patients with ATTR cardiac amyloid infiltration. This cohort study analyzed data of all patients at 12 international centers for amyloidosis from January 1, 2008, through December 31, 2023. Inclusion criteria were asymptomatic ATTR cardiac amyloid infiltration, defined as an absence of HF history, HF signs and symptoms, diuretic therapy, and plasma cell dyscrasia with evidence of myocardial uptake on bone scintigraphy. If plasma cell dyscrasia was present, histologic confirmation of ATTR amyloid was required. Asymptomatic ATTR cardiac amyloid infiltration. The primary outcomes were all-cause and cardiovascular (CV) mortality. The secondary outcomes were unplanned HF hospitalization, unplanned CV-related hospitalization, and a composite outcome of CV mortality and HF hospitalization. The study comprised 485 patients with asymptomatic ATTR cardiac amyloid infiltration (mean [SD] age, 74.9 [9.9] years, 85.8% male, 112 [23.1%] with hereditary ATTR amyloidosis), with 369 (76.1%) having grade 2 or 3 and 116 (23.9%) having grade 1 cardiac uptake at baseline. Patients with grade 2 or 3 uptake exhibited significantly more cardiac functional and structural abnormalities vs patients with grade 1 uptake. At 3 years, compared with grade 1 uptake, patients with grade 2 or 3 uptake had greater development of HF (54.3% [95% CI, 47.7%-61.3%] vs 23.1% [95% CI, 14.8%-35.1%]), greater outpatient diuretic initiation and N-terminal pro-B-type natriuretic peptide progression (35.0% [95% CI, 28.0%-43.2%] vs 12.4% [95% CI, 6.3%-23.7%]), and greater HF hospitalization (8.7% [95% CI, 5.9%-12.9%] vs 0%) and unplanned CV hospitalization (20.0% [95% CI, 15.7%-25.3%] vs 4.3% [95% CI, 1.6%-11.3%]). Over a median follow-up of 37 months (IQR, 20-64 months), the all-cause death rate was similar between patients with grade 1 vs 2 and 3 uptake; however, those with grade 2 or 3 compared with grade 1 uptake had a significantly higher risk of CV mortality (unadjusted hazard ratio, 5.30; 95% CI, 1.92-14.65). This study shows that asymptomatic ATTR cardiac amyloid infiltration encompasses a wide spectrum of disease severity, with patients with grade 2 or 3 cardiac uptake experiencing an increased rate of CV events and CV mortality and patients with grade 1 uptake experiencing a lower CV event rate and predominantly non-CV mortality. These findings support the use of disease-modifying treatments in asymptomatic patients with grade 2 or 3 uptake and highlight the need of large-scale studies to assess their role in grade 1 uptake.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC51 artigos no totalmostrando 101

2026

Pittsburgh compound B positron emission tomography detects cardiomyopathy in hereditary transthyretin amyloidosis patients with negative bone scintigraphy: a pilot study.

Frontiers in nuclear medicine
2025

Atypical gastrointestinal presentation of hereditary transthyretin amyloidosis: a case report highlighting the diagnostic challenge.

European heart journal. Case reports
2025

Impact of High-Dose Tafamidis on Hereditary ATTR (ATTRv) Amyloidosis With Central Nervous System Involvement: Two Case Reports With Clinical, Radiological and Cerebrospinal Fluid Follow Up.

Journal of the peripheral nervous system : JPNS
2025

Long-Term Peritoneal Dialysis in Hereditary Transthyretin Amyloidosis: A Case Report and Management Challenges.

Cureus
2025

Effects of Tafamidis Meglumine on Transient Focal Neurological Episodes and Meningeal Contrast Enhancement in Hereditary Transthyretin-Related Meningeal Amyloidosis: Report of Two Patients Carrying the c.265T>C (p.Y89H) Variant.

Brain and behavior
2025

Atypical Presentation of Hereditary ATTR Amyloidosis with Gastrointestinal and Hepatic Manifestations in an 88-Year-Old Woman: A Case Report.

The American journal of case reports
2025

Clinical and Biochemical Characterization of Hereditary ATTR Amyloidosis Caused by a Novel Transthyretin Variant V121A (p.V141A).

International journal of molecular sciences
2025

Genetic Mutations and Post-Lung Transplant Complications: A Case of Hereditary Transthyretin Amyloidosis.

Transplantation proceedings
2025

Clinical Phenotype and Prognosis of Asymptomatic Patients With Transthyretin Cardiac Amyloid Infiltration.

JAMA cardiology
2025

Pathogenesis, manifestations, diagnosis, and management of CNS complications in hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2025

Involvement of bile acid in diarrhoea and therapeutic effect of colestimide in hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2024

Neurofilament light chain as a biomarker for hereditary ATTR amyloidosis - correlation between neurofilament light chain and nerve conduction study.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2024

[Proposals for the early diagnosis of late-onset hereditary ATTR amyloidosis in ‍nonendemic areas in Japan].

Rinsho shinkeigaku = Clinical neurology
2025

Cochlear implants for hereditary ATTR amyloidosis: a case report of two cases.

European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery
2024

Transthyretin Cardiac Amyloidosis in an Elderly Male With Heart Failure Intolerant to Guideline-Directed Medical Therapy.

Cureus
2024

Wild-Type Transthyretin Amyloidosis: A Prevalent and Underdiagnosed Cause of Heart Failure With Preserved Ejection Fraction.

Cureus
2024

Whole genome sequencing increases the diagnostic rate in Charcot-Marie-Tooth disease.

Brain : a journal of neurology
2023

[A rare variant in the TTR gene (p.E112K) is associated with systemic amyloidosis and a new symptom - skin hyperemia in response to ethanol intake: family segregation analysis, literature review, and a clinical case. Case report].

Terapevticheskii arkhiv
2023

Common transthyretin-derived amyloid fibril structures in patients with hereditary ATTR amyloidosis.

Nature communications
2023

Lessons from the first-in-human in vivo CRISPR/Cas9 editing of the TTR gene by NTLA-2001 trial in patients with transthyretin amyloidosis with cardiomyopathy.

Global cardiology science &amp; practice
2023

Resveratrol Derivatives Inhibit Transthyretin Fibrillization: Structural Insights into the Interactions between Resveratrol Derivatives and Transthyretin.

Journal of medicinal chemistry
2023

Randall-Type Monoclonal Immunoglobulin Deposition Disease in Bone Scintigraphy.

Clinical nuclear medicine
2023

Generation of two induced pluripotent stem cell lines from patients with cardiac amyloidosis carrying heterozygous transthyretin (TTR) mutation.

Stem cell research
2023

Persistent Heart Failure Despite Medical Therapy Leading to a Diagnosis of Cardiac Amyloidosis.

Cureus
2023

Consensus recommendations on holistic care in hereditary ATTR amyloidosis: an international Delphi survey of patient advocates and multidisciplinary healthcare professionals.

BMJ open
2023

[Neurological manifestations of ATTR amyloidosis].

Innere Medizin (Heidelberg, Germany)
2023

Strong positive light chain immunostaining in a patient with transthyretin amyloidosis.

Hematology (Amsterdam, Netherlands)
2023

[Therapeutic Strategies for Hereditary Transthyretin Amyloidosis].

Brain and nerve = Shinkei kenkyu no shinpo
2023

Hereditary transthyretin amyloidosis presenting with spontaneous periorbital purpura: a case report.

European heart journal. Case reports
2023

Neurofilament light chain as a biomarker for monitoring response to change in treatment in hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2023

First Norwegian case of hereditary ATTR amyloidosis with a novel transthyretin variant.

Scandinavian cardiovascular journal : SCJ
2023

Effect of patisiran on stroke volume in hereditary transthyretin-mediated amyloidosis: insights from pressure-volume analysis of the APOLLO study.

European journal of heart failure
2023

Combinatorial screening for therapeutics in ATTRv amyloidosis identifies naphthoquinone analogues as TTR-selective amyloid disruptors.

Journal of pharmacological sciences
2023

Practice of Hereditary ATTR Amyloidosis in Non-endemic Areas of Japan.

Internal medicine (Tokyo, Japan)
2023

Distribution and progression of cerebral amyloid angiopathy in early-onset V30M (p.V50M) hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2022

Cutaneous amyloid is a biomarker in early ATTRv neuropathy and progresses across disease stages.

Annals of clinical and translational neurology
2022

[ATTRv amyloidosis with early improvement demonstrated by the 6-minute walk test following Patisiran therapy: a case report].

Rinsho shinkeigaku = Clinical neurology
2022

Clinical and Genetic Evaluation of People with or at Risk of Hereditary ATTR Amyloidosis: An Expert Opinion and Consensus on Best Practice in Ireland and the UK.

Advances in therapy
2022

CSF/plasma levels, transthyretin stabilisation and safety of multiple doses of tolcapone in subjects with hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2022

Transthyretin: Its function and amyloid formation.

Neurochemistry international
2022

Delivery Strategies for mRNA Vaccines.

Pharmaceutical medicine
2022

Changes in nerve conduction studies predate clinical symptoms onset in early onset Val30Met hereditary ATTR amyloidosis.

European journal of neurology
2021

Progressive vitreous deposits during treatment with inotersen for hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2021

[Genetic counseling and predictive testing for hereditary neuromuscular diseases].

Rinsho shinkeigaku = Clinical neurology
2021

The Role of Imaging in Diagnosing Transthyretin Cardiac Amyloidosis.

Cureus
2021

Innovative lipoplexes formulations with enhanced siRNA efficacy for cancer treatment: Where are we now?

International journal of pharmaceutics
2021

CRISPR-Cas9 In Vivo Gene Editing for Transthyretin Amyloidosis.

The New England journal of medicine
2020

Conversion of 99mtechnetium-pyrophosphate scintigraphy in a patient with hereditary ATTR amyloidosis: importance of repeat scanning.

European heart journal. Case reports
2021

Tetraparesis and sensorimotor axonal polyneuropathy due to co-occurrence of Pompe disease and hereditary ATTR amyloidosis.

Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology
2021

Reduction in CMR Derived Extracellular Volume With Patisiran Indicates Cardiac Amyloid Regression.

JACC. Cardiovascular imaging
2021

Late-onset Hereditary ATTR Amyloidosis with a Novel p.P63S (P43S) Transthyretin Variant.

Internal medicine (Tokyo, Japan)
2020

Content Validation of the ATTR Amyloidosis Patient Symptom Survey: Findings from Patient and Clinician Cognitive Debriefing Interviews.

Patient related outcome measures
2020

Hereditary ATTR Amyloidosis in Austria: Prevalence and Epidemiological Hot Spots.

Journal of clinical medicine
2020

TTR gene silencing therapy in post liver transplant hereditary ATTR amyloidosis patients.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2020

Amyloidosis-the Diagnosis and Treatment of an Underdiagnosed Disease.

Deutsches Arzteblatt international
2019

Tafamidis: a selective transthyretin stabilizer to treat wild-type ATTR amyloidosis and hereditary ATTR amyloidosis with cardiomyopathy.

Drugs of today (Barcelona, Spain : 1998)
2020

Plasma neurofilament light chain: an early biomarker for hereditary ATTR amyloid polyneuropathy.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2020

Coexistence of wild type and hereditary ATTR amyloidosis in one family.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

Cryo-EM structure of a transthyretin-derived amyloid fibril from a patient with hereditary ATTR amyloidosis.

Nature communications
2019

Sporadic Cardiac Amyloidosis by Amyloidogenic Transthyretin V122I Variant.

International heart journal
2019

Association between hearing loss and hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

Characteristics and natural history of autonomic involvement in hereditary ATTR amyloidosis: a systematic review.

Clinical autonomic research : official journal of the Clinical Autonomic Research Society
2019

Novel RNA-targeted therapies for hereditary ATTR amyloidosis and their impact on the autonomic nervous system.

Clinical autonomic research : official journal of the Clinical Autonomic Research Society
2019

A case of cerebral amyloid angiopathy-type hereditary ATTR amyloidosis with Y69H (p.Y89H) variant displaying transient focal neurological episodes as the main symptom.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

Hereditary ATTR Amyloidosis with Cardiomyopathy Caused by the Novel Variant Transthyretin Y114S (p.Y134S).

Internal medicine (Tokyo, Japan)
2019

Transthyretin Amyloid Cardiomyopathy: JACC State-of-the-Art Review.

Journal of the American College of Cardiology
2019

Transthyretin stabilization activity of the catechol-O-methyltransferase inhibitor tolcapone (SOM0226) in hereditary ATTR amyloidosis patients and asymptomatic carriers: proof-of-concept study.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

Tafamidis dramatically improved severe proteinuria in a patient with TTR V30M hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

Electrophysiological demyelinating features in hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2018

Sudoscan in the evaluation and follow-up of patients and carriers with TTR mutations: experience from an Italian Centre.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2018

Cause of death analysis and temporal trends in survival after liver transplantation for transthyretin familial amyloid polyneuropathy.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2019

TTR Gene Silencers for Hereditary ATTR Amyloidosis: More than ICER Recognized.

Journal of managed care &amp; specialty pharmacy
2018

Hereditary cardiac amyloidosis associated with Pro24Ser transthyretin mutation: a case report.

Journal of medical case reports
2019

Screening for Fabry disease and Hereditary ATTR amyloidosis in idiopathic small-fiber and mixed neuropathy.

Muscle &amp; nerve
2018

A library of ATTR amyloidosis patient-specific induced pluripotent stem cells for disease modelling and in vitro testing of novel therapeutics.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2018

Diagnosis and management of transthyretin familial amyloid polyneuropathy in Japan: red-flag symptom clusters and treatment algorithm.

Orphanet journal of rare diseases
2018

Genetic and clinical characteristics of hereditary transthyretin amyloidosis in endemic and non-endemic areas: experience from a single-referral center in Japan.

Journal of neurology
2017

Hereditary ATTR amyloidosis: burden of illness and diagnostic challenges.

The American journal of managed care
2017

Amyloid Polyneuropathy and Myocardial Amyloidosis 10 Years after Domino Liver Transplantation from a Patient with a Transthyretin Ser50Arg Mutation.

Internal medicine (Tokyo, Japan)
2017

Safety and efficacy of a TTR specific antisense oligonucleotide in patients with transthyretin amyloid cardiomyopathy.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

Trial design and rationale for APOLLO, a Phase 3, placebo-controlled study of patisiran in patients with hereditary ATTR amyloidosis with polyneuropathy.

BMC neurology
2017

Genetic testing improves identification of transthyretin amyloid (ATTR) subtype in cardiac amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

The Swedish landscape of hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

Amyloid detection in the transverse carpal ligament of patients with hereditary ATTR V30M amyloidosis and carpal tunnel syndrome.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

Pseudo-homozygous mutation due to a primer site polymorphism in hereditary ATTR amyloidosis: a pitfall of PCR-based genetic testing.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

Marked biochemical difference in amyloid proportion between intra- and extraocular tissues in a liver-transplanted patient with hereditary ATTR amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2016

Extremely early onset hereditary ATTR amyloidosis with G47R (p.G67R) mutation.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2016

Tafamidis in hereditary ATTR amyloidosis - our experience on monitoring the ocular manifestations.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2017

Liver transplantation in transthyretin amyloidosis: Characteristics and management related to kidney disease.

Transplantation reviews (Orlando, Fla.)
2018

Positron emission tomography (PET) utilizing Pittsburgh compound B (PIB) for detection of amyloid heart deposits in hereditary transthyretin amyloidosis (ATTR).

Journal of nuclear cardiology : official publication of the American Society of Nuclear Cardiology
2016

Cerebral amyloid angiopathy in posttransplant patients with hereditary ATTR amyloidosis.

Neurology
2016

Transthyretin familial amyloid polyneuropathy (TTR-FAP) in Mallorca: a comparison between late- and early-onset disease.

Journal of the peripheral nervous system : JPNS
2016

Preclinical evaluation of RNAi as a treatment for transthyretin-mediated amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2015

Cardiac Amyloid - An Update.

European cardiology
2015

First European Congress on Hereditary ATTR amyloidosis.

Orphanet journal of rare diseases
2015

Pathological, biochemical, and biophysical characteristics of the transthyretin variant Y114H (p.Y134H) explain its very mild clinical phenotype.

Journal of the peripheral nervous system : JPNS
2015

Safety and efficacy of long-term diflunisal administration in hereditary transthyretin (ATTR) amyloidosis.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2015

Hereditary ATTR amyloidosis: a single-institution experience with 266 patients.

Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
2015

Outcome of gastric emptying and gastrointestinal symptoms after liver transplantation for hereditary transthyretin amyloidosis.

BMC gastroenterology
2014

[Clinical diversity, diagnosis and treatment of hereditary amyloid neuropathy].

Rinsho shinkeigaku = Clinical neurology
2015

Transthyretin (ATTR) amyloidosis: clinical spectrum, molecular pathogenesis and disease-modifying treatments.

Journal of neurology, neurosurgery, and psychiatry

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

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Doenças relacionadas

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Referências e fontes

Bases de dados externas citadas neste artigo

Publicações científicas

Artigos indexados no PubMed ligados a esta doença no grafo RarasNet — título, periódico e PMID direto da fonte, sem intermediação de IA.

  1. Pittsburgh compound B positron emission tomography detects cardiomyopathy in hereditary transthyretin amyloidosis patients with negative bone scintigraphy: a pilot study.
    Frontiers in nuclear medicine· 2026· PMID 41737628mais citado
  2. Atypical gastrointestinal presentation of hereditary transthyretin amyloidosis: a case report highlighting the diagnostic challenge.
    European heart journal. Case reports· 2025· PMID 41394436mais citado
  3. Effects of Tafamidis Meglumine on Transient Focal Neurological Episodes and Meningeal Contrast Enhancement in Hereditary Transthyretin-Related Meningeal Amyloidosis: Report of Two Patients Carrying the c.265T&gt;C (p.Y89H) Variant.
    Brain and behavior· 2025· PMID 40931533mais citado
  4. Clinical and Biochemical Characterization of Hereditary ATTR Amyloidosis Caused by a Novel Transthyretin Variant V121A (p.V141A).
    International journal of molecular sciences· 2025· PMID 40429804mais citado
  5. Clinical Phenotype and Prognosis of Asymptomatic Patients With Transthyretin Cardiac Amyloid Infiltration.
    JAMA cardiology· 2025· PMID 39841451mais citado
  6. Impact of High-Dose Tafamidis on Hereditary ATTR (ATTRv) Amyloidosis With Central Nervous System Involvement: Two Case Reports With Clinical, Radiological and Cerebrospinal Fluid Follow Up.
    J Peripher Nerv Syst· 2025· PMID 41383038recente
  7. Long-Term Peritoneal Dialysis in Hereditary Transthyretin Amyloidosis: A Case Report and Management Challenges.
    Cureus· 2025· PMID 41080353recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:271861(Orphanet)
  2. MONDO:0007100(MONDO)
  3. Polineuropatia Amiloidotica Familiar(PCDT · Ministério da Saúde)
  4. GARD:21017(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q55786851(Wikidata)

Dados compilados pelo RarasNet a partir de fontes abertas (Orphanet, OMIM, MONDO, PubMed/EuropePMC, ClinicalTrials.gov, DATASUS, PCDT/MS). Este conteúdo é informativo e não substitui avaliação médica.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Amiloidose ATTR hereditária
Compêndio · Raras BR

Amiloidose ATTR hereditária

ORPHA:271861 · MONDO:0007100
🇧🇷 Brasil SUS
CEAF
1ATafamidisPatisiranInotersenEplontersena
Geral
Prevalência
1-9 / 1 000 000
Herança
Autosomal dominant
CID-10
E85.1 · Amiloidose heredofamiliar neuropática
CID-11
Ensaios
21 ativos
Prevalência
0.2222 (Worldwide)
MedGen
UMLS
C5679761
EuropePMC
Wikidata
Papers 10a
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