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Miopatia centronuclear
ORPHA:595CID-10 · G71.22CID-11 · 8C72.01DOENÇA RARA

A Miopatia Centronuclear (MCN) é uma doença neuromuscular hereditária (genética). Ela se manifesta com sintomas de fraqueza muscular presentes desde o nascimento (uma condição chamada miopatia congênita) e por uma característica vista na biópsia muscular: os núcleos das células musculares ficam localizados no centro.

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Introdução

O que você precisa saber de cara

📋

A Miopatia Centronuclear (MCN) é uma doença neuromuscular hereditária (genética). Ela se manifesta com sintomas de fraqueza muscular presentes desde o nascimento (uma condição chamada miopatia congênita) e por uma característica vista na biópsia muscular: os núcleos das células musculares ficam localizados no centro.

Pesquisas ativas
7 ensaios
22 total registrados no ClinicalTrials.gov
Publicações científicas
520 artigos
Último publicado: 2026

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
Adolescent
+ adult, childhood, infancy, neonatal
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: G71.22
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Sinais e sintomas

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

Partes do corpo afetadas

💪
Músculos
34 sintomas
🧠
Neurológico
14 sintomas
🦴
Ossos e articulações
13 sintomas
😀
Face
11 sintomas
🫁
Pulmão
6 sintomas
❤️
Coração
4 sintomas

+ 61 sintomas em outras categorias

Características mais comuns

Oftalmoparesia
Vagina cega
Dificuldade para correr
Dificuldade para subir escadas
Anormalidade da musculatura do pé
Morfologia anormal da válvula cardíaca
154sintomas
Sem dados (154)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 154 características clínicas mais associadas, ordenadas por frequência.

OftalmoparesiaOphthalmoparesis
Vagina cegaBlind vagina
Dificuldade para correrDifficulty running
Dificuldade para subir escadasDifficulty climbing stairs
Anormalidade da musculatura do péAbnormality of the foot musculature

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico520PubMed
Últimos 10 anos200publicações
Pico202227 papers
Linha do tempo
2026Hoje · 2026🧪 2003Primeiro ensaio clínico📈 2022Ano 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

11 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Autosomal recessive, X-linked recessive.

CCDC78Coiled-coil domain-containing protein 78Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Component of the deuterosome, a structure that promotes de novo centriole amplification in multiciliated cells that can generate more than 100 centrioles. Deuterosome-mediated centriole amplification occurs in terminally differentiated multiciliated cells (G1/0) and not in S phase. Essential for centriole amplification and is required for CEP152 localization to the deuterosome

LOCALIZAÇÃO

Cytoplasm, cytoskeleton, microtubule organizing center, centrosome, centrioleCytoplasm, perinuclear regionCell membrane, sarcolemmaSarcoplasmic reticulum

MECANISMO DE DOENÇA

Myopathy, centronuclear, 4

A congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers.

INTERAÇÕES PROTEICAS (1)
OUTRAS DOENÇAS (1)
congenital myopathy with internal nuclei and atypical cores
HGNC:14153UniProt:A2IDD5
MTMR14Phosphatidylinositol-3,5-bisphosphate 3-phosphatase MTMR14Candidate gene tested inTolerante
FUNÇÃO

Lipid phosphatase that specifically dephosphorylates the D-3 position of phosphatidylinositol 3-phosphate and phosphatidylinositol 3,5-bisphosphate, generating phosphatidylinositol and phosphatidylinositol 5-phosphate

LOCALIZAÇÃO

Cytoplasm

VIAS BIOLÓGICAS (2)
MacroautophagySynthesis of PIPs at the plasma membrane
MECANISMO DE DOENÇA

Myopathy, centronuclear, 1

A congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers.

EXPRESSÃO TECIDUAL(Ubíquo)
Baço
43.1 TPM
Sangue
40.9 TPM
Linfócitos
35.7 TPM
Nervo tibial
35.3 TPM
Testículo
35.1 TPM
OUTRAS DOENÇAS (1)
autosomal dominant centronuclear myopathy
HGNC:26190UniProt:Q8NCE2
MYF6Myogenic factor 6Candidate gene tested inTolerante
FUNÇÃO

Involved in muscle differentiation (myogenic factor). Induces fibroblasts to differentiate into myoblasts. Probable sequence specific DNA-binding protein

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (2)
MyogenesisTGFBR3 expression
EXPRESSÃO TECIDUAL(Tecido-específico)
Músculo esquelético
255.0 TPM
Glândula salivar
0.7 TPM
Brain Putamen basal ganglia
0.5 TPM
Brain Nucleus accumbens basal ganglia
0.4 TPM
Adipose Visceral Omentum
0.3 TPM
OUTRAS DOENÇAS (1)
autosomal dominant centronuclear myopathy
HGNC:7566UniProt:P23409
MAMLD1Mastermind-like domain-containing protein 1Candidate gene tested inAltamente restrito
FUNÇÃO

Transactivates the HES3 promoter independently of NOTCH proteins. HES3 is a non-canonical NOTCH target gene which lacks binding sites for RBPJ

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (10)
NOTCH1 Intracellular Domain Regulates TranscriptionPre-NOTCH Transcription and TranslationNOTCH4 Intracellular Domain Regulates TranscriptionNOTCH3 Intracellular Domain Regulates TranscriptionRegulation of gene expression in late stage (branching morphogenesis) pancreatic bud precursor cells
MECANISMO DE DOENÇA

Hypospadias 2, X-linked

A common malformation in which the urethra opens on the ventral side of the penis, due to developmental arrest of urethral fusion. The opening can be located glandular, penile, or even more posterior in the scrotum or perineum. Hypospadias is a feature of several syndromic disorders, including the androgen insensitivity syndrome and Opitz syndrome.

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
36.4 TPM
Ovário
33.9 TPM
Nervo tibial
24.9 TPM
Cervix Endocervix
17.0 TPM
Fallopian Tube
16.5 TPM
OUTRAS DOENÇAS (3)
hypospadias 2, X-linkedX-linked myotubular myopathy-abnormal genitalia syndromeposterior hypospadias
HGNC:2568UniProt:Q13495
TTNTitinCandidate gene tested inRestrito
FUNÇÃO

Key component in the assembly and functioning of vertebrate striated muscles. By providing connections at the level of individual microfilaments, it contributes to the fine balance of forces between the two halves of the sarcomere. The size and extensibility of the cross-links are the main determinants of sarcomere extensibility properties of muscle. In non-muscle cells, seems to play a role in chromosome condensation and chromosome segregation during mitosis. Might link the lamina network to ch

LOCALIZAÇÃO

CytoplasmNucleus

VIAS BIOLÓGICAS (1)
Platelet degranulation
MECANISMO DE DOENÇA

Myopathy, myofibrillar, 9, with early respiratory failure

An autosomal dominant myopathy characterized by adulthood onset of weakness in proximal, distal, axial and respiratory muscles. Pelvic girdle weakness, foot drop and neck weakness are the main symptoms at onset, but ultimately the weakness usually involves the proximal compartment of both upper and lower limbs. Additional features include variable degrees of Achilles tendon contractures, spinal rigidity and muscle hypertrophy. Respiratory involvement often leads to requirement for non-invasive ventilation support.

EXPRESSÃO TECIDUAL(Tecido-específico)
Músculo esquelético
358.5 TPM
Coração - Ventrículo esquerdo
66.8 TPM
Coração - Átrio
56.9 TPM
Testículo
1.6 TPM
Pulmão
1.0 TPM
OUTRAS DOENÇAS (14)
autosomal recessive limb-girdle muscular dystrophy type 2Jmyopathy, myofibrillar, 9, with early respiratory failureearly-onset myopathy with fatal cardiomyopathydilated cardiomyopathy 1G
HGNC:12403UniProt:Q8WZ42
RYR1Ryanodine receptor 1Candidate gene tested inTolerante
FUNÇÃO

Cytosolic calcium-activated calcium channel that mediates the release of Ca(2+) from the sarcoplasmic reticulum into the cytosol and thereby plays a key role in triggering muscle contraction following depolarization of T-tubules (PubMed:11741831, PubMed:16163667, PubMed:18268335, PubMed:18650434, PubMed:26115329). Repeated very high-level exercise increases the open probability of the channel and leads to Ca(2+) leaking into the cytoplasm (PubMed:18268335). Can also mediate the release of Ca(2+)

LOCALIZAÇÃO

Sarcoplasmic reticulum membrane

VIAS BIOLÓGICAS (2)
Ion homeostasisStimuli-sensing channels
MECANISMO DE DOENÇA

Malignant hyperthermia 1

Autosomal dominant pharmacogenetic disorder of skeletal muscle and is one of the main causes of death due to anesthesia. In susceptible people, an MH episode can be triggered by all commonly used inhalational anesthetics such as halothane and by depolarizing muscle relaxants such as succinylcholine. The clinical features of the myopathy are hyperthermia, accelerated muscle metabolism, contractures, metabolic acidosis, tachycardia and death, if not treated with the postsynaptic muscle relaxant, dantrolene. Susceptibility to MH can be determined with the 'in vitro' contracture test (IVCT): observing the magnitude of contractures induced in strips of muscle tissue by caffeine alone and halothane alone. Patients with normal response are MH normal (MHN), those with abnormal response to caffeine alone or halothane alone are MH equivocal (MHE(C) and MHE(H) respectively).

EXPRESSÃO TECIDUAL(Tecido-específico)
Músculo esquelético
423.5 TPM
Cerebelo
21.3 TPM
Cérebro - Hemisfério cerebelar
15.4 TPM
Hipotálamo
13.6 TPM
Testículo
8.7 TPM
OUTRAS DOENÇAS (13)
King-Denborough syndromecongenital multicore myopathy with external ophthalmoplegiacentral core myopathymalignant hyperthermia, susceptibility to, 1
HGNC:10483UniProt:P21817
BIN1Myc box-dependent-interacting protein 1Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Is a key player in the control of plasma membrane curvature, membrane shaping and membrane remodeling. Required in muscle cells for the formation of T-tubules, tubular invaginations of the plasma membrane that function in depolarization-contraction coupling (PubMed:24755653). Is a negative regulator of endocytosis (By similarity). Is also involved in the regulation of intracellular vesicles sorting, modulation of BACE1 trafficking and the control of amyloid-beta production (PubMed:27179792). In

LOCALIZAÇÃO

NucleusCytoplasmEndosomeCell membrane, sarcolemma, T-tubule

VIAS BIOLÓGICAS (1)
Clathrin-mediated endocytosis
MECANISMO DE DOENÇA

Myopathy, centronuclear, 2

A congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers.

OUTRAS DOENÇAS (3)
myopathy, centronuclear, 2autosomal recessive centronuclear myopathyautosomal dominant centronuclear myopathy
HGNC:1052UniProt:O00499
DNM2Dynamin-2Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Catalyzes the hydrolysis of GTP and utilizes this energy to mediate vesicle scission at plasma membrane during endocytosis and filament remodeling at many actin structures during organization of the actin cytoskeleton (PubMed:15731758, PubMed:19605363, PubMed:19623537, PubMed:33713620, PubMed:34744632). Plays an important role in vesicular trafficking processes, namely clathrin-mediated endocytosis (CME), exocytic and clathrin-coated vesicle from the trans-Golgi network, and PDGF stimulated macr

LOCALIZAÇÃO

Cytoplasm, cytoskeletonCytoplasmic vesicle, clathrin-coated vesicleCell projection, uropodiumEndosomeCytoplasm, cytoskeleton, microtubule organizing center, centrosomeCytoplasm, cytoskeleton, microtubule organizing center, centrosome, centrioleRecycling endosomeCell projection, phagocytic cupCytoplasmic vesicle, phagosome membraneCell projection, podosomeCytoplasmCell junctionPostsynaptic densitySynapse, synaptosomeMidbodyMembrane, clathrin-coated pit

VIAS BIOLÓGICAS (1)
NOSTRIN mediated eNOS trafficking
MECANISMO DE DOENÇA

Myopathy, centronuclear, 1

A congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers.

EXPRESSÃO TECIDUAL(Ubíquo)
Pulmão
107.7 TPM
Skin Sun Exposed Lower leg
97.2 TPM
Sangue
94.9 TPM
Intestino delgado
92.3 TPM
Baço
85.9 TPM
OUTRAS DOENÇAS (5)
fetal akinesia-cerebral and retinal hemorrhage syndromeautosomal dominant centronuclear myopathyCharcot-Marie-Tooth disease dominant intermediate Bcentronuclear myopathy
HGNC:2974UniProt:P50570
MAP3K20Mitogen-activated protein kinase kinase kinase 20Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Stress-activated component of a protein kinase signal transduction cascade that promotes programmed cell death in response to various stress, such as ribosomal stress, osmotic shock and ionizing radiation (PubMed:10924358, PubMed:11836244, PubMed:12220515, PubMed:14521931, PubMed:15350844, PubMed:15737997, PubMed:18331592, PubMed:20559024, PubMed:26999302, PubMed:32289254, PubMed:32610081, PubMed:35857590). Acts by catalyzing phosphorylation of MAP kinase kinases, leading to activation of the JN

LOCALIZAÇÃO

CytoplasmNucleus

MECANISMO DE DOENÇA

Split-foot malformation with mesoaxial polydactyly

An autosomal recessive disorder characterized by a split-foot defect, mesoaxial polydactyly, nail abnormalities of the hands, and sensorineural hearing loss.

EXPRESSÃO TECIDUAL(Ubíquo)
Esôfago - Muscular
113.8 TPM
Músculo esquelético
111.2 TPM
Esôfago - Junção
104.4 TPM
Cólon sigmoide
84.9 TPM
Artéria tibial
74.7 TPM
OUTRAS DOENÇAS (3)
split-foot malformation-mesoaxial polydactyly syndromemyopathy, centronuclear, 6, with fiber-type disproportioncongenital fiber-type disproportion myopathy
HGNC:17797UniProt:Q9NYL2
SPEGStriated muscle preferentially expressed protein kinaseDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Isoform 3 may have a role in regulating the growth and differentiation of arterial smooth muscle cells

LOCALIZAÇÃO

Nucleus

MECANISMO DE DOENÇA

Myopathy, centronuclear, 5

A form of centronuclear myopathy, a congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers. CNM5 features include severe neonatal hypotonia with respiratory insufficiency, difficulty feeding, and delayed motor development. Some patients die in infancy, and some develop dilated cardiomyopathy.

EXPRESSÃO TECIDUAL(Ubíquo)
Artéria tibial
209.2 TPM
Aorta
194.6 TPM
Artéria coronária
165.5 TPM
Cólon sigmoide
143.5 TPM
Esôfago - Junção
111.3 TPM
INTERAÇÕES PROTEICAS (3)
OUTRAS DOENÇAS (2)
myopathy, centronuclear, 5autosomal recessive centronuclear myopathy
HGNC:16901UniProt:Q15772
MTM1MyotubularinDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Lipid phosphatase which dephosphorylates phosphatidylinositol 3-monophosphate (PI3P) and phosphatidylinositol 3,5-bisphosphate (PI(3,5)P2) (PubMed:10900271, PubMed:11001925, PubMed:12646134, PubMed:14722070). Has also been shown to dephosphorylate phosphotyrosine- and phosphoserine-containing peptides (PubMed:9537414). Negatively regulates EGFR degradation through regulation of EGFR trafficking from the late endosome to the lysosome (PubMed:14722070). Plays a role in vacuolar formation and morph

LOCALIZAÇÃO

CytoplasmCell membraneCell projection, filopodiumCell projection, ruffleLate endosomeCytoplasm, myofibril, sarcomere

VIAS BIOLÓGICAS (3)
Synthesis of PIPs at the plasma membraneSynthesis of PIPs at the early endosome membraneSynthesis of PIPs at the late endosome membrane
MECANISMO DE DOENÇA

Myopathy, centronuclear, X-linked

A congenital muscle disorder characterized by progressive muscular weakness and wasting involving mainly limb girdle, trunk, and neck muscles. It may also affect distal muscles. Weakness may be present during childhood or adolescence or may not become evident until the third decade of life. Ptosis is a frequent clinical feature. The most prominent histopathologic features include high frequency of centrally located nuclei in muscle fibers not secondary to regeneration, radial arrangement of sarcoplasmic strands around the central nuclei, and predominance and hypotrophy of type 1 fibers.

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
18.1 TPM
Nervo tibial
17.3 TPM
Ovário
17.1 TPM
Baço
14.4 TPM
Glândula adrenal
14.4 TPM
OUTRAS DOENÇAS (3)
X-linked myotubular myopathycentronuclear myopathyX-linked myotubular myopathy-abnormal genitalia syndrome
HGNC:7448UniProt:Q13496

Variantes genéticas (ClinVar)

147 variantes patogênicas registradas no ClinVar.

🧬 CCDC78: CCDC78, TRP402TER (rs752371476) ()
🧬 CCDC78: GRCh37/hg19 16p13.3(chr16:513767-5555136)x3 ()
🧬 CCDC78: GRCh37/hg19 16p13.3-13.13(chr16:85881-12268399)x3 ()
🧬 CCDC78: NC_000016.9:g.(?_256302)_(1557737_?)del ()
🧬 CCDC78: GRCh37/hg19 16p13.3(chr16:85881-1657611)x1 ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 290 variantes classificadas pelo ClinVar.

203
87
Patogênica (70.0%)
VUS (30.0%)
VARIANTES MAIS SIGNIFICATIVAS
MTM1: NM_000252.3(MTM1):c.690G>C (p.Trp230Cys) [Likely pathogenic]
MTM1: NM_000252.3(MTM1):c.690G>T (p.Trp230Cys) [Likely pathogenic]
FOXP3: NM_014009.4(FOXP3):c.116_122dup (p.Gly43fs) [Pathogenic]
TTN: NM_001267550.2(TTN):c.30883G>T (p.Glu10295Ter) [Likely pathogenic]
TTN: NM_001267550.2(TTN):c.107425del (p.Asp35809fs) [Likely pathogenic]

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.
2Fase 22
·Pré-clínico10
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 12 ensaios
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Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Miopatia centronuclear

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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

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

Outros ensaios clínicos

22 ensaios clínicos encontrados, 7 ativos.

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

🥇Melhor nível de evidência: Ensaio randomizado
Timeline de publicações
245 papers (10 anos)
#1

Muscle-Specific DNM2 Overexpression Improves Charcot-Marie-Tooth Disease In Vivo and Reveals a Narrow Therapeutic Window in Skeletal Muscle.

International journal of molecular sciences2026 Feb 02

Charcot-Marie-Tooth disease (CMT), caused by dominant loss-of-function mutations in DNM2, encoding the GTPase dynamin-2, impairs motor and sensory function. However, the respective contributions of muscle and nerve pathology, and the therapeutic potential of increasing DNM2 expression, remain unresolved. We evaluated tissue-targeted and systemic approaches to increase DNM2 in a mouse model carrying the common K562E-CMT mutation. Muscle-specific DNM2 overexpression from embryogenesis in Dnm2K562E/+ mice ameliorated desmin and integrin mislocalization, membrane trafficking defects, mitochondrial abnormalities, and fibrosis in skeletal muscle, resulting in improved locomotor coordination despite persistent muscle atrophy. Conversely, systemic postnatal AAV delivery of human DNM2 increased DNM2 in muscle but failed to transduce nerves and paradoxically worsened the muscle pathology, producing centronuclear myopathy-like features. These findings reveal a primary pathogenic impact of DNM2-CMT mutation within skeletal muscle, independent of nerve involvement. Collectively, they underscore that precise DNM2 dosage is critical for neuromuscular homeostasis and reveal a narrow therapeutic window for safe and effective therapeutic intervention. This paradox, in which efforts to compensate for a loss-of-function neuropathy risk inducing a gain-of-function myopathy, highlights the need for tightly controlled modulation of DNM2 activity in future therapeutic strategies.

#2

Incidence and Prevalence of Congenital Myopathies - A Population-Based Study From Western Sweden.

Annals of neurology2026 Feb

Congenital myopathies are a group of rare genetic muscle disorders. Previous studies have estimated point prevalences which only include surviving individuals. Our aim was to perform an epidemiological study with strict inclusion criteria, using modern diagnostic technology to present both incidences and prevalences, and to describe the genetic and muscle pathological characteristics of these disorders. A retrospective, population-based epidemiological study was conducted in western Sweden between 1985 and 2022. All patients diagnosed with congenital myopathies during this period were included. In total, 104 patients were identified whereas 25 died during the follow-up. The total birth prevalence (estimated lifetime risk) was 14.9 per 100,000 live births, whereas the total cumulative incidence by age 35 years was 12.3 per 100,000 inhabitants, and the total point prevalence was 3.9 per 100,000 inhabitants. The most common histopathological type was congenital myopathy with nonspecific changes (birth prevalence 4.1 per 100,000 live births), followed by core myopathy and centronuclear myopathy (2.1 per 100,000). The most common causative genes were MYH2 (3.9 per 100,000) and RYR1 (2.0 per 100,000). Despite using next-generation sequencing, 1 in 5 cases lacked a genetic diagnosis. Among those without a genetic cause, 4 of 5 had nonspecific histopathological changes. By including all patients identified, both alive and deceased, our estimated incidence figures are considerably higher than estimates of point prevalence, which only includes living patients. As the mortality in these diseases is significant, incidence figures better reflect the occurrence in the population and are important for evidence-based health care planning and resource allocation. ANN NEUROL 2026;99:382-392.

#3

Liver health in myotubular and centronuclear myopathies: a patient-driven data collection study to better understand liver health and improve standards of care.

Neuromuscular disorders : NMD2026 Feb 27

Liver health issues in X-linked myotubular myopathy and centronuclear myopathies have historically been under-recognized, with liver monitoring not a routine focus of clinical care. Anecdotal case reports and liver-related adverse events in recent clinical trials highlight the growing need to better understand liver involvement in this population. A patient-led initiative brought together a multi-stakeholder expert working group, the 'Myotubular and Centronuclear Myopathy Global Liver Collaborative' who developed a liver health questionnaire to collect longitudinal patient-reported liver health data. Data from 219 participants was analysed and liver abnormalities were found to be most prevalent in myotubular myopathy patients with 36 % of affected males having abnormal liver function tests with liver issues also reported by symptomatic female carriers. Patients with liver abnormalities were also more likely to require invasive ventilation and had poorer motor function, suggesting a link between liver health and overall disease severity. Significant variation in liver monitoring was observed, with 30 % of participants never having undergone liver function blood tests demonstrating the need for routine liver screening to inform standards of care and guide clinical management. The patient-driven Liver Collaborative has been instrumental in raising awareness in liver related issues with clinical and patient communities.

#4

Integrative Multi-Omics and Network Analyses Reveal Pathogenic and Protective Pathways in Centronuclear Myopathies.

International journal of molecular sciences2025 Nov 28

Centronuclear and myotubular myopathies (CNMs) are rare, inherited muscle disorders characterized by muscle atrophy, weakness, and altered muscle fiber structure, primarily caused by mutations in MTM1, DNM2, or BIN1. The molecular mechanisms driving CNM are only partially understood, and no curative therapies are available. To elucidate molecular pathways involved in CNMs, we present an integrative multi-omics analysis across several CNM mouse models untreated or treated with pre-clinical strategies, combining transcriptomic, proteomic, and metabolomic datasets with curated interaction, metabolic, tissue, and phenotype knowledge using network-based approaches. Weighted Gene Co-expression Network Analysis (WGCNA) identified gene modules commonly altered in three CNM genetic forms. Modules correlated with improved muscle function were enriched for processes such as muscle contraction, RNA metabolism, and oxidative phosphorylation, whereas modules linked to disease severity were enriched for immune response, innervation, vascularization, and fatty acid oxidation. We further integrated transcriptomic, proteomic, and metabolomic data from the Mtm1-/y mouse model with public knowledge bases into a multilayer network, and explored it using a random walk with restart approach. These analyses highlighted metabolites closely connected to CNM phenotypes, some of which may represent candidates for nutritional or pharmacological modulation. Our findings illustrate how integrative multi-omics and network analyses reveal both pathogenic and protective pathways in CNM and provide a foundation for identifying novel therapeutic opportunities.

#5

Ca2+, ROS, IL-6, and p38 MAPK signaling loops underlying alterations in myotube formation induced by a severe MH/CCD mutation in RyR1.

American journal of physiology. Cell physiology2025 Dec 01

Mutations in the gene encoding the skeletal muscle ryanodine receptor (RyR1) can result in muscle diseases, termed RyR1-related myopathies (RyR1-RM). Examples include malignant hyperthermia (MH), central core disease (CCD), and centronuclear myopathy (CNM). The muscles involved often have more (and mispositioned) nuclei than normal. A subset of the corresponding mutant proteins shows an overactive or leaky sarcoplasmic reticulum (SR) channel behavior that depletes the SR Ca2+ content and increases the level of cytosolic Ca2+. In addition, two remarkable effects of these RyR1 variants have been reported in cultured myogenic cells: enhanced expression of interleukin-6 (IL-6) and stimulation of myoblast fusion (myonuclei accretion). Here, we have investigated whether the latter effect is due to a possible IL-6-dependent autocrine loop. Toward this goal, we analyzed the impact of the overactive Y523S mutant compared with the wild-type RyR1 after expression in C2C12 cells. The results show that this mutation indeed drastically promotes myoblast fusion up to ∼300%. Moreover, this action depends on the sequential activation of SR Ca2+ release, store-operated Ca2+ channels, reactive oxygen species (ROS, cytosolic and mitochondrial), calpain, and calcineurin. In addition, a neutralizing antibody directed against IL-6 and a p38 inhibitor completely suppressed the stimulation of myoblast fusion. Furthermore, in RyR1-expressing cells, myotube formation was promoted by either exogenous IL-6 or conditioned medium obtained from the Y523S-expressing cells. These findings suggest an autocrine mechanism involving the interplay between Ca2+, ROS, IL-6, and p38 signaling pathways in controlling myonuclei density, which could be essential to explain the pathogenesis of RyR1-RM.NEW & NOTEWORTHY Overactive RyR1 mutant proteins are associated with muscle disease; interestingly, they increase the number of myonuclei when expressed in C2C12 cells. We discovered that this alteration depends on a Ca2+/ROS loop, which recruits calpain and calcineurin to stimulate the production of IL-6 and the subsequent autocrine activation of p38. Thus, disease-causing RyR1 mutations require an IL-6 autocrine system to alter myonuclear density. This novel mechanism could be critical to understanding the pathogenesis of congenital myopathies.

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Acta neuropathologica communications
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2018

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Journal of neuromuscular diseases
2017

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2018

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Neurology
2018

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Frontiers in molecular neuroscience
2018

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Muscle &amp; nerve
2018

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European heart journal
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Muscle &amp; nerve
2018

Novel SPEG Mutations in Congenital Myopathy without Centralized Nuclei.

Journal of neuromuscular diseases
2018

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Molecular therapy : the journal of the American Society of Gene Therapy
2018

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Nature reviews. Neurology
2018

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EMBO molecular medicine
2017

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Molecular genetics &amp; genomic medicine
2018

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Muscle &amp; nerve
2017

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Medecine sciences : M/S
2018

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Muscle &amp; nerve
2017

Dominant Centronuclear Myopathy with Early Childhood Onset due to a Novel Mutation in BIN1.

Journal of neuromuscular diseases
2017

Impaired excitation-contraction coupling in muscle fibres from the dynamin2R465W mouse model of centronuclear myopathy.

The Journal of physiology
2018

Phenotype variability and histopathological findings in patients with a novel DNM2 mutation.

Neuropathology : official journal of the Japanese Society of Neuropathology
2017

Expression of the neuropathy-associated MTMR2 gene rescues MTM1-associated myopathy.

Human molecular genetics
2017

Deficiency in Kelch protein Klhl31 causes congenital myopathy in mice.

The Journal of clinical investigation
2017

Common and variable clinical, histological, and imaging findings of recessive RYR1-related centronuclear myopathy patients.

Neuromuscular disorders : NMD
2017

A rare case of centronuclear myopathy with DNM2 mutation: genotype-phenotype correlation.

Autopsy &amp; case reports
2017

Affected female carriers of MTM1 mutations display a wide spectrum of clinical and pathological involvement: delineating diagnostic clues.

Acta neuropathologica
2017

Dynamin-2 mutations linked to Centronuclear Myopathy impair actin-dependent trafficking in muscle cells.

Scientific reports
2017

Emery-Dreifuss muscular dystrophy-linked genes and centronuclear myopathy-linked genes regulate myonuclear movement by distinct mechanisms.

Molecular biology of the cell
2017

Insights from genotype-phenotype correlations by novel SPEG mutations causing centronuclear myopathy.

Neuromuscular disorders : NMD
2017

Grand paternal inheritance of X-linked myotubular myopathy due to mosaicism, and identification of necklace fibers in an asymptomatic male.

Neuromuscular disorders : NMD
2017

Loss of Dynamin 2 GTPase function results in microcytic anaemia.

British journal of haematology
2017

Phenotypes, genotypes, and prevalence of congenital myopathies older than 5 years in Denmark.

Neurology. Genetics
2017

Sarcolipin deletion exacerbates soleus muscle atrophy and weakness in phospholamban overexpressing mice.

PloS one
2016

In vivo imaging of skeletal muscle in mice highlights muscle defects in a model of myotubular myopathy.

Intravital
2017

Hereditary myopathies with early respiratory insufficiency in adults.

Muscle &amp; nerve
2017

Dihydropyridine receptor (DHPR, CACNA1S) congenital myopathy.

Acta neuropathologica
2017

Abnormal spontaneous activity in primary myopathic disorders.

Muscle &amp; nerve
2017

Exome sequencing is a valuable approach in critically ill patients with suspected monogenic disease: Diagnosis of X-linked centronuclear myopathy in preterm twins.

Pediatrics and neonatology
2017

Progressive Structural Defects in Canine Centronuclear Myopathy Indicate a Role for HACD1 in Maintaining Skeletal Muscle Membrane Systems.

The American journal of pathology
2016

Calcium homeostasis alterations in a mouse model of the Dynamin 2-related centronuclear myopathy.

Biology open
2016

Clinical, Electrophysiology, and Pathology Features of Dynamin Centronuclear Myopathy: A Case Report and Review of Literature.

Journal of clinical neuromuscular disease
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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. Muscle-Specific DNM2 Overexpression Improves Charcot-Marie-Tooth Disease In Vivo and Reveals a Narrow Therapeutic Window in Skeletal Muscle.
    International journal of molecular sciences· 2026· PMID 41683892mais citado
  2. Incidence and Prevalence of Congenital Myopathies - A Population-Based Study From Western Sweden.
    Annals of neurology· 2026· PMID 41159764mais citado
  3. Liver health in myotubular and centronuclear myopathies: a patient-driven data collection study to better understand liver health and improve standards of care.
    Neuromuscular disorders : NMD· 2026· PMID 41806468mais citado
  4. Integrative Multi-Omics and Network Analyses Reveal Pathogenic and Protective Pathways in Centronuclear Myopathies.
    International journal of molecular sciences· 2025· PMID 41373724mais citado
  5. Ca2+, ROS, IL-6, and p38 MAPK signaling loops underlying alterations in myotube formation induced by a severe MH/CCD mutation in RyR1.
    American journal of physiology. Cell physiology· 2025· PMID 41212187mais citado
  6. X-linked myotubular myopathy in a neonate: a case report and literature review.
    Front Pediatr· 2026· PMID 41982260recente
  7. Polymorphic myopathological findings in a 77-year-old woman with oculo-bulbo-facial and distal weakness.
    Brain Pathol· 2026· PMID 41918325recente
  8. Tamoxifen treatment fails to improve muscle dysfunction in a model of recessive RYR1-linked centronuclear myopathy.
    Dis Model Mech· 2025· PMID 41459639recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:595(Orphanet)
  2. MONDO:0018947(MONDO)
  3. GARD:101(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q782958(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

Miopatia centronuclear
Compêndio · Raras BR

Miopatia centronuclear

ORPHA:595 · MONDO:0018947
Prevalência
Unknown
Herança
Autosomal dominant, Autosomal recessive, X-linked recessive
CID-10
G71.22 · Transtornos primários dos músculos
CID-11
Ensaios
7 ativos
Início
Adolescent, Adult, Childhood, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0175709
EuropePMC
Wikidata
Papers 10a
Evidência
🥇 Ensaio rand.
DiscussaoAtiva

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