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Miocardiopatia dilatada com ataxia
ORPHA:66634CID-10 · E71.1CID-11 · 5C50.E0OMIM 610198DOENÇA RARA

É uma síndrome caracterizada por um problema grave no coração, que fica dilatado e fraco (cardiomiopatia dilatada), com início grave e precoce (antes dos três anos de idade). Ela também apresenta problemas na condução elétrica do coração (a síndrome do QT longo), dificuldade de coordenação motora que não piora com o tempo (ataxia cerebelar), desenvolvimento anormal dos testículos e excesso de ácido 3-metilglutacônico na urina (acidúria 3-metilglutacônica).

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Introdução

O que você precisa saber de cara

📋

É uma síndrome caracterizada por um problema grave no coração, que fica dilatado e fraco (cardiomiopatia dilatada), com início grave e precoce (antes dos três anos de idade). Ela também apresenta problemas na condução elétrica do coração (a síndrome do QT longo), dificuldade de coordenação motora que não piora com o tempo (ataxia cerebelar), desenvolvimento anormal dos testículos e excesso de ácido 3-metilglutacônico na urina (acidúria 3-metilglutacônica).

Pesquisas ativas
1 ensaio
1 total registrados no ClinicalTrials.gov
Publicações científicas
20 artigos
Último publicado: 2025 Mar

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Início
Childhood
+ infancy
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: E71.1
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (7)
0202010279
Dosagem de aminoácidos (erros inatos)metabolic_test
0202010295
Dosagem de ácidos orgânicos na urinagenetic_test
0202010490
Teste de triagem para erros inatos do metabolismonewborn_screening
0202010694
Sequenciamento completo do exoma (WES)rehabilitation
0202080013
Teste do pezinho (triagem neonatal)nutritional
0301070040
Atendimento em reabilitação — doenças raras
+1 outros procedimentos
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Sinais e sintomas

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

Partes do corpo afetadas

🧠
Neurológico
11 sintomas
📏
Crescimento
6 sintomas
❤️
Coração
6 sintomas
🩸
Sangue
2 sintomas
💪
Músculos
2 sintomas
🫃
Digestivo
2 sintomas

+ 18 sintomas em outras categorias

Características mais comuns

100%prev.
Déficit de crescimento
Frequência: 18/18
100%prev.
Acidúria 3-metilglutacônica
Muito frequente (99-80%)
100%prev.
Retardo do crescimento pós-natal
Frequência: 18/18
100%prev.
Acidúria 3-metilglutárica
Frequência: 18/18
90%prev.
Acidemia glutárica
Muito frequente (99-80%)
90%prev.
Atraso de crescimento
Muito frequente (99-80%)
52sintomas
Muito frequente (7)
Frequente (14)
Ocasional (10)
Muito raro (15)
Sem dados (6)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 52 características clínicas mais associadas, ordenadas por frequência.

Déficit de crescimentoFailure to thrive
Frequência: 18/18100%
Acidúria 3-metilglutacônica3-Methylglutaconic aciduria
Muito frequente (99-80%)100%
Retardo do crescimento pós-natalPostnatal growth retardation
Frequência: 18/18100%
Acidúria 3-metilglutárica3-Methylglutaric aciduria
Frequência: 18/18100%
Acidemia glutáricaGlutaric acidemia
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico20PubMed
Últimos 10 anos18publicações
Pico20204 papers
Linha do tempo
2025Hoje · 2026🧪 2010Primeiro ensaio clínico📈 2020Ano 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

1 gene identificado com associação a esta condição. Padrão de herança: Autosomal recessive.

DNAJC19Mitochondrial import inner membrane translocase subunit TIM14Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Mitochondrial co-chaperone which forms a complex with prohibitins to regulate cardiolipin remodeling (By similarity). May be a component of the PAM complex, a complex required for the translocation of transit peptide-containing proteins from the inner membrane into the mitochondrial matrix in an ATP-dependent manner. May act as a co-chaperone that stimulate the ATP-dependent activity (By similarity)

LOCALIZAÇÃO

Mitochondrion inner membrane

VIAS BIOLÓGICAS (1)
Mitochondrial protein import
MECANISMO DE DOENÇA

3-methylglutaconic aciduria 5

An autosomal recessive disorder characterized by early-onset dilated cardiomyopathy, growth failure, cerebellar ataxia causing significant motor delays, testicular dysgenesis, growth failure and significant increases in urine organic acids, particularly 3-methylglutaconic acid and 3-methylglutaric acid.

EXPRESSÃO TECIDUAL(Ubíquo)
Artéria tibial
46.4 TPM
Glândula adrenal
46.0 TPM
Rim - Medula
45.7 TPM
Ovário
42.0 TPM
Pituitária
41.6 TPM
OUTRAS DOENÇAS (1)
3-methylglutaconic aciduria type 5
HGNC:30528UniProt:Q96DA6

Medicamentos aprovados (FDA)

1 medicamento encontrado nos registros da FDA americana.

💊 Corlanor (IVABRADINE)
Ver no DailyMed/FDA

Variantes genéticas (ClinVar)

63 variantes patogênicas registradas no ClinVar.

🧬 DNAJC19: NM_145261.4(DNAJC19):c.29_32del (p.Leu10fs) ()
🧬 DNAJC19: GRCh37/hg19 3q22.1-29(chr3:132561657-197851986)x3 ()
🧬 DNAJC19: NM_145261.4(DNAJC19):c.263del (p.Leu87_Leu88insTer) ()
🧬 DNAJC19: NM_145261.4(DNAJC19):c.168dup (p.Lys57fs) ()
🧬 DNAJC19: NM_145261.4(DNAJC19):c.122del (p.Pro41fs) ()
Ver todas no ClinVar

Vias biológicas (Reactome)

1 via biológica associada aos genes desta condição.

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.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Miocardiopatia dilatada com ataxia

🗺️

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

1 pesquisa recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

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Publicações mais relevantes

Timeline de publicações
18 papers (10 anos)
#1

Altered Fibroblast Glutamine Metabolism Is Linked to the Severity of Cardiac Dysfunction in DCMA, a Mitochondrial Cardiomyopathy.

Journal of inherited metabolic disease2025 Mar

The dilated cardiomyopathy with ataxia (DCMA) syndrome is a rare mitochondrial disorder caused by mutations in the poorly understood DNAJC19 gene. Cardiac involvement in DCMA ranges from mild conduction abnormalities to early severe myocardial dysfunction. Although evidence suggests that DCMA is linked to abnormalities in mitochondrial function, the molecular underpinnings of this condition are unclear, and there is no way to predict which patients will develop life-threatening disease. To address this, we developed a metabolic flux assay for assessing the metabolic function of mitochondria in fibroblasts derived from DCMA patients. Using this approach, we discovered that DCMA fibroblasts have elevated glutamine uptake, increased glutamate and ammonium secretion, and elevated lactate production. Moreover, we observed that these cellular perturbations were closely correlated with cardiac dysfunction in a blinded cohort of patient cell lines. These findings suggest that glutamine catabolism is abnormal in DCMA and may serve as a predictor of clinical progression.

#2

Generation of a homozygous DNAJC19 knockout human embryonic stem cell line by CRISPR/Cas9 system.

Stem cell research2024 Jun

The DNAJC19 gene, a member of DNAJ heat shock protein (Hsp40) family, is localized within the inner mitochondrial membrane (IMM) and plays a crucial role in regulating the function and localization of mitochondrial Hsp70 (MtHsp70). Mutations in the DNAJC19 gene cause Dilated Cardiomyopathy with Ataxia Syndrome (DCMA). The precise mechanisms underlying the DCMA phenotype caused by DNAJC19 mutations remain poorly understood, and effective treatment modalities were lacking unitl recently. By using CRISPR-Cas9 gene editing technology, this study generated a DNAJC19-knockout (DNAJC19-KO) human embryonic stem cell line (hESC), which will be a useful tool in studying the pathogenesis of DCMA.

#3

Genital Abnormalities and Growth Retardation as Early Signs of Dilated Cardiomyopathy with Ataxia Syndrome.

Case reports in genetics2024

Dilated cardiomyopathy with ataxia syndrome is a rare mitochondrial disease caused by autosomal recessive mutations in the DNAJC19 gene. The disease has been described in detail in the Canadian Hutterite population, but a few sporadic cases with de novo mutations have been published worldwide. We describe a homozygous pathogenic variant in the DNAJC19 gene, diagnosed in Northern Greece, presenting with genital anomalies, growth failure, cardiomyopathy, and ataxia, but without increased urinary 3-methylglutaconic acid and additional presence of vitamin D disorders, hypercalciuria, and osteopenia. This case not only expands the clinical characteristics of 3-methylglutaconic aciduria type V (MGCA5) but also highlights the power of genetic analysis for detecting a diagnosis when the metabolic screen is negative.

#4

Mutations in DNAJC19 cause altered mitochondrial structure and increased mitochondrial respiration in human iPSC-derived cardiomyocytes.

Molecular metabolism2024 Jan

Dilated cardiomyopathy with ataxia (DCMA) is an autosomal recessive disorder arising from truncating mutations in DNAJC19, which encodes an inner mitochondrial membrane protein. Clinical features include an early onset, often life-threatening, cardiomyopathy associated with other metabolic features. Here, we aim to understand the metabolic and pathophysiological mechanisms of mutant DNAJC19 for the development of cardiomyopathy. We generated induced pluripotent stem cell-derived cardiomyocytes (iPSC-CMs) of two affected siblings with DCMA and a gene-edited truncation variant (tv) of DNAJC19 which all lack the conserved DnaJ interaction domain. The mutant iPSC-CMs and their respective control cells were subjected to various analyses, including assessments of morphology, metabolic function, and physiological consequences such as Ca2+ kinetics, contractility, and arrhythmic potential. Validation of respiration analysis was done in a gene-edited HeLa cell line (DNAJC19tvHeLa). Structural analyses revealed mitochondrial fragmentation and abnormal cristae formation associated with an overall reduced mitochondrial protein expression in mutant iPSC-CMs. Morphological alterations were associated with higher oxygen consumption rates (OCRs) in all three mutant iPSC-CMs, indicating higher electron transport chain activity to meet cellular ATP demands. Additionally, increased extracellular acidification rates suggested an increase in overall metabolic flux, while radioactive tracer uptake studies revealed decreased fatty acid uptake and utilization of glucose. Mutant iPSC-CMs also showed increased reactive oxygen species (ROS) and an elevated mitochondrial membrane potential. Increased mitochondrial respiration with pyruvate and malate as substrates was observed in mutant DNAJC19tv HeLa cells in addition to an upregulation of respiratory chain complexes, while cellular ATP-levels remain the same. Moreover, mitochondrial alterations were associated with increased beating frequencies, elevated diastolic Ca2+ concentrations, reduced sarcomere shortening and an increased beat-to-beat rate variability in mutant cell lines in response to β-adrenergic stimulation. Loss of the DnaJ domain disturbs cardiac mitochondrial structure with abnormal cristae formation and leads to mitochondrial dysfunction, suggesting that DNAJC19 plays an essential role in mitochondrial morphogenesis and biogenesis. Moreover, increased mitochondrial respiration, altered substrate utilization, increased ROS production and abnormal Ca2+ kinetics provide insights into the pathogenesis of DCMA-related cardiomyopathy.

#5

Phenotype and pathology of the dilated cardiomyopathy with ataxia syndrome in children.

Journal of inherited metabolic disease2022 Mar

The dilated cardiomyopathy with ataxia syndrome (DCMA) is an autosomal recessive mitochondrial disease caused by mutations in the DnaJ heat shock protein family (Hsp40) member C19 (DNAJC19) gene. DCMA or 3-methylglutaconic aciduria type V is globally rare, but the largest number of patients in the world is found in the Hutterite population of southern Alberta in Canada. We provide an update on phenotypic findings, natural history, pathological findings, and our clinical experience. We analyzed all available records for 43 patients diagnosed with DCMA between 2005 and 2015 at the Alberta Children's Hospital. All patients studied were Hutterite and homozygous for the causative DNAJC19 variant (c.130-1G>C, IVS3-1G>C) and had elevated levels of 3-methyglutaconic acid. We calculated a birth prevalence of 1.54 cases per 1000 total births in the Hutterite community. Children were small for gestational age at birth and frequently required supplemental nutrition (63%) or surgical placement of a gastrostomy tube (35%). Early mortality in this cohort was high (40%) at a median age of 13 months (range 4-294 months). Congenital anomalies were common as was dilated cardiomyopathy (50%), QT interval prolongation (83%), and developmental delay (95%). Tissue pathology was analyzed in a limited number of patients and demonstrated subendocardial fibrosis in the heart, macrovesicular steatosis and fibrosis in the liver, and structural abnormalities in mitochondria. This report provides clinical details for a cohort of children with DCMA and the first presentation of tissue pathology for this disorder. Despite sharing common genetic etiology and environment, the disease is highly heterogeneous for reasons that are not understood. DCMA is a clinically heterogeneous systemic mitochondrial disease with significant morbidity and mortality that is common in the Hutterite population of southern Alberta.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC7 artigos no totalmostrando 18

2025

Altered Fibroblast Glutamine Metabolism Is Linked to the Severity of Cardiac Dysfunction in DCMA, a Mitochondrial Cardiomyopathy.

Journal of inherited metabolic disease
2024

Generation of a homozygous DNAJC19 knockout human embryonic stem cell line by CRISPR/Cas9 system.

Stem cell research
2024

Genital Abnormalities and Growth Retardation as Early Signs of Dilated Cardiomyopathy with Ataxia Syndrome.

Case reports in genetics
2024

Mutations in DNAJC19 cause altered mitochondrial structure and increased mitochondrial respiration in human iPSC-derived cardiomyocytes.

Molecular metabolism
2022

Novel homozygous pathogenic mitochondrial DNAJC19 variant in a patient with dilated cardiomyopathy and global developmental delay.

Molecular genetics &amp; genomic medicine
2022

Antioxidant system disturbances and mitochondrial dysfunction induced by 3-methyglutaric acid in rat heart are prevented by bezafibrate.

European journal of pharmacology
2022

Phenotype and pathology of the dilated cardiomyopathy with ataxia syndrome in children.

Journal of inherited metabolic disease
2021

Cardiac Involvement in Movement Disorders.

Movement disorders clinical practice
2020

Metabolic Alterations Caused by Defective Cardiolipin Remodeling in Inherited Cardiomyopathies.

Life (Basel, Switzerland)
2020

Generation of two patient-derived iPSC lines from siblings (LIBUCi001-A and LIBUCi002-A) and a genetically modified iPSC line (JMUi001-A-1) to mimic dilated cardiomyopathy with ataxia (DCMA) caused by a homozygous DNAJC19 mutation.

Stem cell research
2020

Cardiolipin remodeling in Barth syndrome and other hereditary cardiomyopathies.

Biochimica et biophysica acta. Molecular basis of disease
2020

Reversible Mitochondrial Fragmentation in iPSC-Derived Cardiomyocytes From Children With DCMA, a Mitochondrial Cardiomyopathy.

The Canadian journal of cardiology
2019

SS-31 Peptide Reverses the Mitochondrial Fragmentation Present in Fibroblasts From Patients With DCMA, a Mitochondrial Cardiomyopathy.

Frontiers in cardiovascular medicine
2019

The role of mitochondrial cardiolipin in heart function and its implication in cardiac disease.

Biochimica et biophysica acta. Molecular basis of disease
2018

Addition of Digoxin Improves Cardiac Function in Children With the Dilated Cardiomyopathy With Ataxia Syndrome: A Mitochondrial Cardiomyopathy.

The Canadian journal of cardiology
2016

Progressive Cerebellar Atrophy and a Novel Homozygous Pathogenic DNAJC19 Variant as a Cause of Dilated Cardiomyopathy Ataxia Syndrome.

Pediatric neurology
2017

Oculomotor apraxia and dilated cardiomyopathy with ataxia syndrome: A case report.

Ophthalmic genetics
2015

Metabolic annotation of 2-ethylhydracrylic acid.

Clinica chimica acta; international journal of clinical chemistry

Associações

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Comunidades

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

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. Altered Fibroblast Glutamine Metabolism Is Linked to the Severity of Cardiac Dysfunction in DCMA, a Mitochondrial Cardiomyopathy.
    Journal of inherited metabolic disease· 2025· PMID 40033659mais citado
  2. Generation of a homozygous DNAJC19 knockout human embryonic stem cell line by CRISPR/Cas9 system.
    Stem cell research· 2024· PMID 38696852mais citado
  3. Genital Abnormalities and Growth Retardation as Early Signs of Dilated Cardiomyopathy with Ataxia Syndrome.
    Case reports in genetics· 2024· PMID 38283849mais citado
  4. Mutations in DNAJC19 cause altered mitochondrial structure and increased mitochondrial respiration in human iPSC-derived cardiomyocytes.
    Molecular metabolism· 2024· PMID 38142971mais citado
  5. Phenotype and pathology of the dilated cardiomyopathy with ataxia syndrome in children.
    Journal of inherited metabolic disease· 2022· PMID 34580891mais citado
  6. Novel homozygous pathogenic mitochondrial DNAJC19 variant in a patient with dilated cardiomyopathy and global developmental delay.
    Mol Genet Genomic Med· 2022· PMID 35611801recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:66634(Orphanet)
  2. OMIM OMIM:610198(OMIM)
  3. MONDO:0012435(MONDO)
  4. GARD:12964(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q24960528(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

Miocardiopatia dilatada com ataxia
Compêndio · Raras BR

Miocardiopatia dilatada com ataxia

ORPHA:66634 · MONDO:0012435
Prevalência
Unknown
Herança
Autosomal recessive
CID-10
E71.1 · Outros distúrbios do metabolismo de aminoácidos de cadeia ramificada
CID-11
Ensaios
1 ativos
Início
Childhood, Infancy
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1857776
Repurposing
1 candidato
dexrazoxanechelating agent|topoisomerase inhibitor
EuropePMC
Wikidata
Papers 10a
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