Raras
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Síndrome coração-mão
ORPHA:228184DOENÇA RARA

A síndrome coração-mão refere-se a um grupo de doenças congênitas caracterizadas por malformações dos membros superiores e do coração. Até o momento, a síndrome coração-mão compreende as seguintes síndromes raras; síndrome de Holt-Oram; síndrome coração-mão tipo 2; síndrome coração-mão tipo 3; síndrome da mão cardíaca, tipo esloveno, polegar braquidactilia longo; e persistência do canal arterial-válvula aórtica bicúspide - anomalias da mão.

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Introdução

O que você precisa saber de cara

📋

A síndrome coração-mão refere-se a um grupo de doenças congênitas caracterizadas por malformações dos membros superiores e do coração. Até o momento, a síndrome coração-mão compreende as seguintes síndromes raras; síndrome de Holt-Oram; síndrome coração-mão tipo 2; síndrome coração-mão tipo 3; síndrome da mão cardíaca, tipo esloveno, polegar braquidactilia longo; e persistência do canal arterial-válvula aórtica bicúspide - anomalias da mão.

Publicações científicas
50 artigos
Último publicado: 1993
🏥
SUS: Sem cobertura SUSScore: 0%
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Sinais e sintomas

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

Partes do corpo afetadas

🦴
Ossos e articulações
42 sintomas
❤️
Coração
37 sintomas
😀
Face
6 sintomas
👂
Ouvidos
3 sintomas
💪
Músculos
3 sintomas
🫁
Pulmão
2 sintomas

+ 60 sintomas em outras categorias

Características mais comuns

Falange média do quinto dedo curta
Condução atrioventricular anormal
Arritmia supraventricular
Pregas anteriores do lóbulo da orelha
Eletrofisiologia anormal da origem do nó sinoatrial
Morfologia anormal do pé
156sintomas
Sem dados (156)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 156 características clínicas mais associadas, ordenadas por frequência.

Falange média do quinto dedo curtaShort middle phalanx of the 5th finger
Condução atrioventricular anormalAbnormal atrioventricular conduction
Arritmia supraventricularSupraventricular arrhythmia
Pregas anteriores do lóbulo da orelhaAnterior creases of earlobe
Eletrofisiologia anormal da origem do nó sinoatrialAbnormal electrophysiology of sinoatrial node origin

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa3desde 2023
Total histórico50PubMed
Últimos 10 anos14publicações
Pico20183 papers
Linha do tempo
2023Hoje · 2026🧪 2014Primeiro ensaio clínico📈 2018Ano de pico
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

3 genes identificados com associação a esta condição.

TBX5T-box transcription factor TBX5Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

DNA-binding protein that regulates the transcription of several genes and is involved in heart development and limb pattern formation (PubMed:25725155, PubMed:25963046, PubMed:26917986, PubMed:27035640, PubMed:29174768, PubMed:8988164). Binds to the core DNA motif of NPPA promoter (PubMed:26926761)

LOCALIZAÇÃO

NucleusCytoplasm

VIAS BIOLÓGICAS (3)
YAP1- and WWTR1 (TAZ)-stimulated gene expressionPhysiological factorsCardiogenesis
MECANISMO DE DOENÇA

Holt-Oram syndrome

Developmental disorder affecting the heart and upper limbs. It is characterized by thumb anomaly and atrial septal defects.

EXPRESSÃO TECIDUAL(Tecido-específico)
Coração - Átrio
71.0 TPM
Pulmão
35.0 TPM
Esôfago - Muscular
20.7 TPM
Esôfago - Junção
15.3 TPM
Coração - Ventrículo esquerdo
14.7 TPM
OUTRAS DOENÇAS (2)
Holt-Oram syndromefamilial long QT syndrome
HGNC:11604UniProt:Q99593
MYH8Myosin-8Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Muscle contraction

LOCALIZAÇÃO

Cytoplasm, myofibril

VIAS BIOLÓGICAS (1)
Striated Muscle Contraction
MECANISMO DE DOENÇA

Carney complex variant

Carney complex is a multiple neoplasia syndrome characterized by spotty skin pigmentation, cardiac and other myxomas, endocrine tumors, and psammomatous melanotic schwannomas. Familial cardiac myxomas are associated with spotty pigmentation of the skin and other phenotypes, including primary pigmented nodular adrenocortical dysplasia, extracardiac (frequently cutaneous) myxomas, schwannomas, and pituitary, thyroid, testicular, bone, ovarian, and breast tumors. Cardiac myxomas do not develop in all patients with the Carney complex, but affected patients have at least two features of the complex or one feature and a clinically significant family history.

EXPRESSÃO TECIDUAL(Baixa expressão)
Músculo esquelético
3.9 TPM
Rim - Medula
1.2 TPM
Testículo
0.5 TPM
Rim - Córtex
0.1 TPM
Baço
0.1 TPM
OUTRAS DOENÇAS (2)
trismus-pseudocamptodactyly syndromeCarney complex - trismus - pseudocamptodactyly syndrome
HGNC:7578UniProt:P13535
LMNAPrelamin-A/CDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Lamins are intermediate filament proteins that assemble into a filamentous meshwork, and which constitute the major components of the nuclear lamina, a fibrous layer on the nucleoplasmic side of the inner nuclear membrane (PubMed:10080180, PubMed:10580070, PubMed:10587585, PubMed:10814726, PubMed:11799477, PubMed:12075506, PubMed:12927431, PubMed:15317753, PubMed:18551513, PubMed:18611980, PubMed:2188730, PubMed:22431096, PubMed:2344612, PubMed:23666920, PubMed:24741066, PubMed:31434876, PubMed:

LOCALIZAÇÃO

Nucleus laminaNucleus envelopeNucleus, nucleoplasmNucleus matrixNucleus speckle

VIAS BIOLÓGICAS (1)
Initiation of Nuclear Envelope (NE) Reformation
MECANISMO DE DOENÇA

Emery-Dreifuss muscular dystrophy 2, autosomal dominant

A form of Emery-Dreifuss muscular dystrophy, a degenerative myopathy characterized by weakness and atrophy of muscle without involvement of the nervous system, early contractures of the elbows, Achilles tendons and spine, and cardiomyopathy associated with cardiac conduction defects.

EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
392.7 TPM
Aorta
300.6 TPM
Skin Not Sun Exposed Suprapubic
297.7 TPM
Skin Sun Exposed Lower leg
272.6 TPM
Útero
255.8 TPM
OUTRAS DOENÇAS (23)
restrictive dermopathy 2familial partial lipodystrophy, Dunnigan typedilated cardiomyopathy-hypergonadotropic hypogonadism syndromemandibuloacral dysplasia with type A lipodystrophy
HGNC:6636UniProt:P02545

Variantes genéticas (ClinVar)

1,221 variantes patogênicas registradas no ClinVar.

🧬 TBX5: NM_181486.4(TBX5):c.85G>T (p.Glu29Ter) ()
🧬 TBX5: NM_181486.4(TBX5):c.1329_1338del (p.Asn444fs) ()
🧬 TBX5: NM_181486.4(TBX5):c.511-2A>C ()
🧬 TBX5: NM_181486.4(TBX5):c.139del (p.Thr47fs) ()
🧬 TBX5: NM_181486.4(TBX5):c.933C>A (p.Tyr311Ter) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 195 variantes classificadas pelo ClinVar.

29
166
Patogênica (14.9%)
VUS (85.1%)
VARIANTES MAIS SIGNIFICATIVAS
LMNA: NM_170707.4(LMNA):c.5del (p.Glu2fs) [Pathogenic]
LMNA: NM_170707.4(LMNA):c.1046G>A (p.Arg349Gln) [Conflicting classifications of pathogenicity]
LMNA: NM_170707.4(LMNA):c.593A>G (p.Gln198Arg) [Conflicting classifications of pathogenicity]
LMNA: NM_170707.4(LMNA):c.595A>C (p.Thr199Pro) [Uncertain significance]
LMNA: NM_170707.4(LMNA):c.1840G>T (p.Gly614Cys) [Uncertain significance]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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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.
·Pré-clínico5
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 5 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome coração-mão

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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

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

Outros ensaios clínicos

0 ensaios clínicos encontrados.

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

Timeline de publicações
16 papers (10 anos)
#1

Holt-Oram Syndrome With Atrial Septal Defect.

Cureus2024 Jul

Holt-Oram syndrome is an autosomal dominant condition marked by heart and upper limb defects. Holt and Oram were the first to narrate this in 1960. Holt-Oram syndrome is the prototype of heart-hand syndromes and has recently been mapped to the long arm of chromosome 12 (12q2). This syndrome was described in 1960 by Dr Mary Holt and Dr Samuel Oram. It is an autosomal dominant condition resulting from a mutation in TBX5 located on chromosome 12q24.1, which regulates cardiac and limb morphogenesis. It must be differentiated from heart-hand syndrome type II (Tobatznik's syndrome) and heart-hand syndrome type III (MIM No. 140450), which are phenotypically similar. The latter do not map to 12q2, and atrial septal defects do not occur in these conditions. This syndrome is distinguished by heart problems as well as thumb aplasia or hypoplasia. It is sometimes referred to as atriodigital syndrome, upper limb-cardiovascular syndrome, heart-hand syndrome, cardiomelic syndrome, or cardiac limb syndrome. Other upper-limb anomalies include aplasia or hypoplasia of the radius, arm length variation, atypical forearm pronation and supination, uncommon thumb resistance, sloping shoulders, and restricted shoulder movement. All those who are affected have an aberrant carpal bone, which might be the only sign of the illness. Seventy-five percent of those with Holt-Oram syndrome have a congenital cardiac defect, which most frequently affects the septum. In this case, we report a girl who is 4 years and 6 months old and is a known case of Holt-Oram syndrome with an atrial septal defect. She underwent device closure and had come to the pediatric op with fever and cough. Holt-Oram syndrome also referred to as the heart-hand syndrome, is an autosomal dominant disorder that is characterized by upper limb abnormalities in association with congenital heart lesions. First described in 1960 by Holt and Oram, the syndrome was identified when thumb anomalies and atrial septal defects (ASD) were observed in family members across four generations. Since then, the identification of more cases and advances in technology has allowed for a greater understanding of the syndrome. However, there is still a significant proportion of individuals who are being born with the disorder in both industrialized and underdeveloped countries.

#2

Familial atrial myopathy in a large multigenerational heart-hand syndrome pedigree carrying an LMNA missense variant in rod 2B domain (p.R335W).

Heart rhythm2022 Mar

The literature on laminopathy with ventricular phenotype is extensive. However, the pathogenicity of LMNA variations in atrial lesions still lacks research. The purpose of this study was to characterize the atrial phenotypes and possible mechanisms in a large Chinese family with heart-hand syndrome carrying a LMNA missense variant in rod 2B domain (c.1003C>T p.R335W). Clinical characteristics were collected on the basis of the pedigree investigation. Comprehensive functional analyses, including molecular dynamic (MD) simulation, cellular, and animal functional assays, determined the pathogenicity in atrial myopathy. In the pedigree investigation, 6 of 13 of the mutation carriers showed heterogeneous cardiac phenotypes and 8 carriers also had brachydactyly. In silico molecular dynamics simulations predicted increased binding energy of the R335W mutant lamin A. Atrial cardiomyocytes (HL-1, human induced pluripotent stem cell-derived atrial cardiomyocytes) expressing R335W showed abnormal nuclear morphology, compromised DNA repair, and dysfunctional contraction. Adult zebrafish expressing mutant lamin A showed increased P wave duration in the electrocardiogram, decreased peak A wave velocity in echocardiography, and atrial lesions under the transmission electron microscope. LMNA p.R335W mutation leads to familial heart-hand syndrome characterized by an overlapping phenotype of prominent atrial lesions and brachydactyly. The unstable lamin dimerization and impaired DNA repair are possible mechanisms underlying cardiac phenotypes. Our findings consolidated the genetic role in the course of atrial arrhythmias and cardiac aging, which is helpful in the diagnosis and treatment of cardiac laminopathy.

#3

Case Report: BAF-Opathies/SSRIDDs Due to a de novo ACTL6A Variant, Previously Considered to Be Heart-Hand Syndrome.

Frontiers in cardiovascular medicine2021

Purpose: This study aims to identify genetic lesions in patients with congenital heart disease (CHD) with or without other phenotypes. In this study, over 400 patients were recruited and several novel variants in known causative genes were identified. A Chinese patient clinically diagnosed with HHS (patent ductus arteriosus, persistent left superior vena cava, and congenital absence of left arm radius) was included in the study cohort. Methods: Targeted, whole exome, and Sanger sequencing were performed to identify genetic lesions. The effects of the variant on ACTL6A RNA and protein were assessed using bioinformatics analysis. Results: At the start of the study, no mutations in known and candidate causative genes associated with CHD were identified. Seven years later, we noticed craniofacial deformities and identified a de novo heterozygous deletion variant in ACTL6A (NM_004301, c.478_478delT; p.F160Lfs*9). Intellectual disability and short stature were identified by a follow-up visit 10 years later. This variant leads to frameshift sequences and a premature termination codon and may affect the features of proteins. According to the nonsense-mediated mRNA decay theory, this variant may induce the decay of ACTL6A mRNA in patients. Conclusion: Our study reported the first ACTL6A variant in a Chinese individual, providing further evidence that ACTL6A is involved in heart and upper limb skeletal and intellectual development, thereby expanding the spectrum of ACTL6A variants. Thus, mutation analysis of the ACTL6A gene should be considered in patients with BAF-opathies or heart-hand syndromes due to potential misdiagnosis. Craniofacial dysmorphisms and intellectual disability are key to distinguishing these two diseases clinically, and attention to developmental delay/intellectual disability and craniofacial deformities will contribute to the diagnosis of BAF-opathies.

#4

TBX3 and TBX5 duplication: A family with an atypical overlapping Holt-Oram/ulnar-mammary syndrome phenotype.

European journal of medical genetics2021 Jul

Holt-Oram syndrome (HOS) is a rare, autosomal dominant heart-hand syndrome caused by mutations in the TBX5 gene. A wide spectrum of TBX5 mutations have been reported previously, most resulting in a null allele leading to haploinsufficiency. TBX5 gene duplications have been previously reported in association with typical and atypical HOS phenotypes. Ulnar-Mammary syndrome (UMS) is a distinct rare, autosomal dominant condition caused by mutations in the TBX3 gene. TBX5 and TBX3 are physically linked in cis on human chromosome 12 and contiguous chromosome 12q24 deletions comprising both TBX5 and TBX3 genes have been previously reported but to our knowledge, duplications have never been described. We report on a large German family with at least 17 affected individuals over 6 generations bearing a duplication at 12q24.21 identified on array-CGH comprising both TBX5 and TBX3 genes. Affected patients are presenting with HOS and UMS symptoms, consisting of variable limb anomalies involving the radial and the ulnar rays and cardiac findings such as congenital heart defects, persistent arterial duct or aortic stenosis, and non-classical symptoms, such as supernumerary nipples and cardiomyopathy. Fluorescence in situ hybridisation confirmed a tandem duplication at the 12q24.21 locus. This is the first report of a contiguous TBX3/TBX5 duplication associated with HOS/UMS phenotype.

#5

Heart-hand Syndrome.

Internal medicine (Tokyo, Japan)2021 May 15

Publicações recentes

Ver todas no PubMed

📚 EuropePMC29 artigos no totalmostrando 13

2024

Holt-Oram Syndrome With Atrial Septal Defect.

Cureus
2022

Familial atrial myopathy in a large multigenerational heart-hand syndrome pedigree carrying an LMNA missense variant in rod 2B domain (p.R335W).

Heart rhythm
2021

Case Report: BAF-Opathies/SSRIDDs Due to a de novo ACTL6A Variant, Previously Considered to Be Heart-Hand Syndrome.

Frontiers in cardiovascular medicine
2021

TBX3 and TBX5 duplication: A family with an atypical overlapping Holt-Oram/ulnar-mammary syndrome phenotype.

European journal of medical genetics
2020

Clinical and epidemiological features of heart-hand syndrome, an updated analysis in China.

BMC musculoskeletal disorders
2019

Holt-Oram Syndrome: Hands are the Clue to the Diagnosis.

International journal of applied & basic medical research
2018

A novel de novo TBX5 mutation in a patient with Holt-Oram syndrome.

The application of clinical genetics
2018

Electrical disorders in atrial septal defect: genetics and heritability.

Journal of thoracic disease
2019

Postmortem Diagnosis of Heart-hand Syndrome Associated With a 7p22.1p22.3 Deletion in a 16-week-old Fetus.

Pediatric and developmental pathology : the official journal of the Society for Pediatric Pathology and the Paediatric Pathology Society
2018

Clinical and epidemiological features of Heart-Hand Syndrome: a hospital-based study in China.

Scientific reports
2017

Heart-hand syndrome IV: a second family with LMNA-related cardiomyopathy and brachydactyly.

Clinical genetics
2016

A novel de novo TBX5 mutation in a patient with Holt-Oram syndrome leading to a dramatically reduced biological function.

Molecular genetics & genomic medicine
2015

MicroRNA 19a replacement partially rescues fin and cardiac defects in zebrafish model of Holt Oram syndrome.

Scientific reports
Ver todos os 29 no EuropePMC

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

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

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. Holt-Oram Syndrome With Atrial Septal Defect.
    Cureus· 2024· PMID 39156428mais citado
  2. Familial atrial myopathy in a large multigenerational heart-hand syndrome pedigree carrying an LMNA missense variant in rod 2B domain (p.R335W).
    Heart rhythm· 2022· PMID 34808346mais citado
  3. Case Report: BAF-Opathies/SSRIDDs Due to a de novo ACTL6A Variant, Previously Considered to Be Heart-Hand Syndrome.
    Frontiers in cardiovascular medicine· 2021· PMID 34485408mais citado
  4. TBX3 and TBX5 duplication: A family with an atypical overlapping Holt-Oram/ulnar-mammary syndrome phenotype.
    European journal of medical genetics· 2021· PMID 33930582mais citado
  5. Heart-hand Syndrome.
    Internal medicine (Tokyo, Japan)· 2021· PMID 33281169mais citado
  6. Holt-Oram Syndrome.
    · 1993· PMID 20301290recente
  7. Holt-Oram Syndrome.
    · 2026· PMID 30020711recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:228184(Orphanet)
  2. MONDO:0016432(MONDO)
  3. GARD:20573(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q18018497(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

Síndrome coração-mão
Compêndio · Raras BR

Síndrome coração-mão

ORPHA:228184 · MONDO:0016432
MedGen
UMLS
C0265264
EuropePMC
Wikidata
Papers 10a
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