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Síndrome Carey-Fineman-Ziter
ORPHA:1358CID-10 · Q87.0CID-11 · LD2F.1YDOENÇA RARA
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Introdução

O que você precisa saber de cara

📋

A síndrome de Carey-Fineman-Ziter é uma condição genética rara. Menos de 10 casos foram relatados na literatura.

Publicações científicas
21 artigos
Último publicado: 2025 Jul 3

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
<1 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
20
pacientes catalogados
Início
Neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q87.0
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (5)
0202010503
Cariótipo — bandas G, Q ou Rgenetic_test
0202010600
Pesquisa de microdeleções/microduplicações por FISHlab_test
0202010694
Sequenciamento completo do exoma (WES)rehabilitation
0202010260
Dosagem de alfa-fetoproteína
0301070040
Atendimento em reabilitação — doenças raras
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

Preparando trilha educativa...

Sinais e sintomas

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

Partes do corpo afetadas

😀
Face
16 sintomas
💪
Músculos
11 sintomas
🧠
Neurológico
11 sintomas
📏
Crescimento
5 sintomas
👁️
Olhos
5 sintomas
🦴
Ossos e articulações
5 sintomas

+ 28 sintomas em outras categorias

Características mais comuns

90%prev.
Ptose
Muito frequente (99-80%)
90%prev.
Sequência de Pierre-Robin
Muito frequente (99-80%)
90%prev.
Filtro longo
Muito frequente (99-80%)
90%prev.
Hipotonia
Muito frequente (99-80%)
90%prev.
Paralisia facial
Muito frequente (99-80%)
90%prev.
Nariz curto
Muito frequente (99-80%)
94sintomas
Muito frequente (15)
Frequente (10)
Ocasional (11)
Sem dados (58)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 94 características clínicas mais associadas, ordenadas por frequência.

PtosePtosis
Muito frequente (99-80%)90%
Sequência de Pierre-RobinPierre-Robin sequence
Muito frequente (99-80%)90%
Filtro longoLong philtrum
Muito frequente (99-80%)90%
HipotoniaHypotonia
Muito frequente (99-80%)90%
Paralisia facialFacial palsy
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico21PubMed
Últimos 10 anos16publicações
Pico20183 papers
Linha do tempo
2026Hoje · 2026📈 2018Ano 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

2 genes identificados com associação a esta condição. Padrão de herança: Autosomal recessive.

MYMKProtein myomakerDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Myoblast-specific protein that mediates myoblast fusion, an essential step for the formation of multi-nucleated muscle fibers (PubMed:28681861). Actively participates in the membrane fusion reaction by mediating the mixing of cell membrane lipids (hemifusion) upstream of MYMX. Acts independently of MYMX (By similarity). Involved in skeletal muscle regeneration in response to injury by mediating the fusion of satellite cells, a population of muscle stem cells, with injured myofibers (By similarit

LOCALIZAÇÃO

Cell membraneGolgi apparatus membrane

MECANISMO DE DOENÇA

Carey-Fineman-Ziter syndrome 1

An autosomal recessive multisystem disorder characterized by hypotonia, bilateral congenital facial palsy with impairment of ocular abduction (Moebius sequence), micrognathia, glossoptosis and high-arched or cleft palate (Pierre Robin complex), delayed motor milestones, and failure to thrive.

INTERAÇÕES PROTEICAS (3)
OUTRAS DOENÇAS (2)
Carey-Fineman-Ziter syndrome 1Carey-Fineman-Ziter syndrome
HGNC:33778UniProt:A6NI61
MYMXProtein myomixerDisease-causing germline mutation(s) (loss of function) inDesconhecido
FUNÇÃO

Myoblast-specific protein that mediates myoblast fusion, an essential step for the formation of multi-nucleated muscle fibers (PubMed:28569745, PubMed:35642635). Involved in membrane fusion downstream of the lipid mixing step mediated by MYMK (By similarity). Acts by generating membrane stresses via its extracellular C-terminus, leading to drive fusion pore formation. Acts independently of MYMK (By similarity). Involved in skeletal muscle regeneration in response to injury by mediating the fusio

LOCALIZAÇÃO

Cell membrane

MECANISMO DE DOENÇA

Carey-Fineman-Ziter syndrome 2

An autosomal recessive disorder characterized by weakness of the facial musculature, hypomimic facies, increased overbite, micrognathia, and facial dysmorphism. Some patients manifest failure to thrive, axial hypotonia, and progressive scoliosis.

INTERAÇÕES PROTEICAS (1)
OUTRAS DOENÇAS (2)
Carey-Fineman-Ziter syndrome 2Carey-Fineman-Ziter syndrome
HGNC:52391UniProt:A0A1B0GTQ4

Variantes genéticas (ClinVar)

58 variantes patogênicas registradas no ClinVar.

🧬 MYMK: NM_001080483.3(MYMK):c.457C>T (p.Gln153Ter) ()
🧬 MYMK: NM_001080483.3(MYMK):c.586C>T (p.Pro196Ser) ()
🧬 MYMK: GRCh37/hg19 9q33.2-34.3(chr9:124095694-141020389)x3 ()
🧬 MYMK: GRCh38/hg38 9q34.13-34.3(chr9:137552409-137879159) ()
🧬 MYMK: GRCh38/hg38 9q34.13-34.3(chr9:137552082-137728529) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 9 variantes classificadas pelo ClinVar.

6
3
Patogênica (66.7%)
VUS (33.3%)
VARIANTES MAIS SIGNIFICATIVAS
MYMK: NM_001080483.3(MYMK):c.457C>T (p.Gln153Ter) [Pathogenic]
MYMK: NM_001080483.3(MYMK):c.586C>T (p.Pro196Ser) [Likely pathogenic]
MYMX: NM_001315494.2(MYMX):c.255A>G (p.Ter85Trp) [Pathogenic]
MYMX: NM_001315494.2(MYMX):c.107T>A (p.Leu36Ter) [Pathogenic]
MYMX: NM_001315494.2(MYMX):c.136C>T (p.Arg46Ter) [Pathogenic]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome Carey-Fineman-Ziter

🗺️

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

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

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Publicações mais relevantes

🥇Melhor nível de evidência: Revisão sistemática
Timeline de publicações
15 papers (10 anos)
#1

Myomaker and Myomixer are required for craniofacial myoblast fusion in zebrafish.

Developmental dynamics : an official publication of the American Association of Anatomists2026 Mar

Craniofacial and trunk skeletal muscles are derived from different progenitor populations during development. Trunk skeletal muscles contain mostly multinucleated myofibers that are formed through myoblast fusion. However, myoblast fusion in craniofacial muscles and its molecular regulation are not well understood. Recent studies revealed that genetic mutations in MYOMAKER and MYOMIXER fusogens in humans cause Carey-Fineman-Ziter Syndrome (CFZS), characterized by facial weakness and lower jaw deformity. Previous studies in zebrafish revealed that knockout of myomaker and myomixer resulted in deformed craniofacial formation. To establish the causal connection between loss of fusogen function and craniofacial deformities, we characterized myoblast fusion in zebrafish craniofacial muscles. Our results demonstrate that myomaker and myomixer are expressed in both slow and fast craniofacial muscles, and loss of these fusogens results in defects in craniofacial myoblast fusion. Interestingly, unlike trunk muscles of early embryos and larvae that show fast-fiber-specific fusogen expression and fusion while slow muscle fusion only occurs at 3 weeks post-fertilization, both slow and fast craniofacial muscles fuse as early as 3 days post-fertilization. Collectively, this study demonstrates that myomaker and myomixer are expressed in both slow and fast-twitch craniofacial muscles and are essential for myoblast fusion and the development of craniofacial muscles.

#2

Multimodality Craniofacial Phenotyping of Congenital Facial Weakness Disorders.

The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association2025 Jul 03

ObjectiveCongenital facial weakness (CFW) disorders are a heterogeneous group of rare conditions, that present at birth, with reduced facial movement, and mask-like facies. This study utilized a multimodality approach to examine the craniofacial and intraoral phenotypes among CFW disorders: Moebius syndrome (MBS), Hereditary Congenital Facial Palsy (HCFP), β-tubulin isotype 3 syndrome (CFEOM3A-TUBB3), Carey-Fineman-Ziter syndrome (CFZS), and a group of rarer disorders (Other).DesignProspective cohort study.Setting: Dental clinic.Participants: Sixty individuals (sex ratio 1:1, mean age 26.2 ± 17.5 years) with a diagnosis of CFW.Interventions: Deep clinical craniofacial and dental phenotyping, three-dimensional facial surface and cone-beam computed tomography scans, and cephalometric and geometric morphometric analyses.ResultsCFEOM3A-TUBB3, MBS, and CFZS groups had the highest prevalence of craniofacial anomalies; HCFP individuals were least affected. CFEOM3A-TUBB3 had a higher prevalence of short lower face (75%), poor oral hygiene (100%)/decay (75%), and Class II malocclusion (87.5%). Moebius syndrome was associated with lagophthalmos (90.9%), tongue fissures (72.4%), tight/small oral orifice (51.7%), and tongue fasciculations (50%). Carey-Fineman-Ziter syndrome had oblong facial shape (100%), downward lip commissures (100%), and abnormal hearing (60%). Moderate-severe decay/gingivitis correlated with restricted oral orifice, common among patients with facial animation/sling surgery. Morphologically, the CFW cohort had a relatively small craniofacial centroid size, anthropometric measurements, and distinct craniofacial shapes for each subtype.ConclusionsCongenital facial weakness can result in abnormal craniofacial development in addition to the loss of facial movement. Multimodality phenotypic characterization of CFW disorders elucidated key clinical findings and distinct craniofacial shape segregation among the different groups.

#3

Oral Health-Related Quality of Life in Rare Disorders of Congenital Facial Weakness.

International journal of environmental research and public health2024 May 13

Congenital facial weakness (CFW) encompasses a heterogenous set of rare disorders presenting with decreased facial movement from birth, secondary to impaired function of the facial musculature. The aim of the present study is to provide an analysis of subject-reported oral health-related quality of life (OHRQoL) in congenital facial weakness (CFW) disorders. Forty-four subjects with CFW and age- and sex- matched controls were enrolled in an Institutional Review Board (IRB)-approved study. Demographic data, medical and surgical history, comprehensive oral examination, and the Oral Health Impact Profile (OHIP-14) were obtained. Compared to unaffected controls, subjects with CFW had higher OHIP-14 scores overall (mean ± SD: 13.11 ± 8.11 vs. 4.46 ± 4.98, p < 0.0001) and within five of seven oral health domains, indicating decreased OHRQoL. Although subjects with Moebius syndrome (MBS) were noted to have higher OHIP-14 scores than those with Hereditary Congenital Facial Paresis (HCFP), there was no significant correlation in OHIP-14 score to age, sex, or specific diagnosis. An increase in OHIP-14 scores in subjects was detected in those who had undergone reanimation surgery. In conclusion, subjects with CFW had poorer OHRQoL compared to controls, and subjects with MBS had poorer OHRQoL than subjects with HCFP. This study provides better understanding of oral health care needs and quality of life in a CFW cohort and suggests that guidelines for dental treatment are required.

#4

Aberrant myonuclear domains and impaired myofiber contractility despite marked hypertrophy in MYMK-related, Carey-Fineman-Ziter Syndrome.

Acta neuropathologica communications2024 May 24

Carey Fineman Ziter Syndrome (CFZS) is a rare autosomal recessive disease caused by mutations in the MYMK locus which encodes the protein, myomaker. Myomaker is essential for fusion and concurrent myonuclei donation of muscle progenitors during growth and development. Strikingly, in humans, MYMK mutations appear to prompt myofiber hypertrophy but paradoxically, induce generalised muscle weakness. As the underlying cellular mechanisms remain unexplored, the present study aimed to gain insights by combining myofiber deep-phenotyping and proteomic profiling. Hence, we isolated individual muscle fibers from CFZS patients and performed mechanical, 3D morphological and proteomic analyses. Myofibers from CFZS patients were ~ 4x larger than controls and possessed ~ 2x more myonuclei than those from healthy subjects, leading to disproportionally larger myonuclear domain volumes. These greater myonuclear domain sizes were accompanied by smaller intrinsic cellular force generating-capacities in myofibers from CFZS patients than in control muscle cells. Our complementary proteomic analyses indicated remodelling in 233 proteins particularly those associated with cellular respiration. Overall, our findings suggest that myomaker is somewhat functional in CFZS patients, but the associated nuclear accretion may ultimately lead to non-functional hypertrophy and altered energy-related mechanisms in CFZS patients. All of these are likely contributors of the muscle weakness experienced by CFZS patients.

#5

Molecular regulation of myocyte fusion.

Current topics in developmental biology2024

Myocyte fusion is a pivotal process in the development and regeneration of skeletal muscle. Failure during fusion can lead to a range of developmental as well as pathological consequences. This review aims to comprehensively explore the intricate processes underlying myocyte fusion, from the molecular to tissue scale. We shed light on key players, such as the muscle-specific fusogens - Myomaker and Myomixer, in addition to some lesser studied molecules contributing to myocyte fusion. Conserved across vertebrates, Myomaker and Myomixer play a crucial role in driving the merger of plasma membranes of fusing myocytes, ensuring the formation of functional muscle syncytia. Our multiscale approach also delves into broader cell and tissue dynamics that orchestrate the timing and positioning of fusion events. In addition, we explore the relevance of muscle fusogens to human health and disease. Mutations in fusogen genes have been linked to congenital myopathies, providing unique insights into the molecular basis of muscle diseases. We conclude with a discussion on potential therapeutic avenues that may emerge from manipulating the myocyte fusion process to remediate skeletal muscle disorders.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC13 artigos no totalmostrando 16

2025

Multimodality Craniofacial Phenotyping of Congenital Facial Weakness Disorders.

The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
2026

Myomaker and Myomixer are required for craniofacial myoblast fusion in zebrafish.

Developmental dynamics : an official publication of the American Association of Anatomists
2024

Oral Health-Related Quality of Life in Rare Disorders of Congenital Facial Weakness.

International journal of environmental research and public health
2024

Aberrant myonuclear domains and impaired myofiber contractility despite marked hypertrophy in MYMK-related, Carey-Fineman-Ziter Syndrome.

Acta neuropathologica communications
2024

Molecular regulation of myocyte fusion.

Current topics in developmental biology
2022

Impaired activity of the fusogenic micropeptide Myomixer causes myopathy resembling Carey-Fineman-Ziter syndrome.

The Journal of clinical investigation
2022

Involvement of muscle satellite cell dysfunction in neuromuscular disorders: Expanding the portfolio of satellite cell-opathies.

European journal of translational myology
2022

Defining and identifying satellite cell-opathies within muscular dystrophies and myopathies.

Experimental cell research
2021

Differentiating Moebius syndrome and other congenital facial weakness disorders with electrodiagnostic studies.

Muscle &amp; nerve
2020

Carey-Fineman-Ziter Syndrome: A MYMK-Related Myopathy Mimicking Brainstem Dysgenesis.

Journal of neuromuscular diseases
2018

Carey-Fineman-Ziter syndrome with mutations in the myomaker gene and muscle fiber hypertrophy.

Neurology. Genetics
2018

Knockout of myomaker results in defective myoblast fusion, reduced muscle growth and increased adipocyte infiltration in zebrafish skeletal muscle.

Human molecular genetics
2018

Whole-exome sequencing identifies mutations in MYMK in a mild form of Carey-Fineman-Ziter syndrome.

Neurology. Genetics
2017

Identification of STAC3 variants in non-Native American families with overlapping features of Carey-Fineman-Ziter syndrome and Moebius syndrome.

American journal of medical genetics. Part A
2017

A defect in myoblast fusion underlies Carey-Fineman-Ziter syndrome.

Nature communications
2016

Temporomandibular joint ankylosis as part of the clinical spectrum of Carey-Fineman-Ziter syndrome?

American journal of medical genetics. Part A

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. Myomaker and Myomixer are required for craniofacial myoblast fusion in zebrafish.
    Developmental dynamics : an official publication of the American Association of Anatomists· 2026· PMID 40317819mais citado
  2. Multimodality Craniofacial Phenotyping of Congenital Facial Weakness Disorders.
    The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association· 2025· PMID 40611650mais citado
  3. Oral Health-Related Quality of Life in Rare Disorders of Congenital Facial Weakness.
    International journal of environmental research and public health· 2024· PMID 38791829mais citado
  4. Aberrant myonuclear domains and impaired myofiber contractility despite marked hypertrophy in MYMK-related, Carey-Fineman-Ziter Syndrome.
    Acta neuropathologica communications· 2024· PMID 38790073mais citado
  5. Molecular regulation of myocyte fusion.
    Current topics in developmental biology· 2024· PMID 38670716mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:1358(Orphanet)
  2. MONDO:0031415(MONDO)
  3. GARD:3889(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q3508625(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 Carey-Fineman-Ziter
Compêndio · Raras BR

Síndrome Carey-Fineman-Ziter

ORPHA:1358 · MONDO:0031415
Prevalência
<1 / 1 000 000
Casos
20 casos conhecidos
Herança
Autosomal recessive
CID-10
Q87.0 · Síndromes com malformações congênitas afetando predominantemente o aspecto da face
CID-11
Início
Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1850746
EuropePMC
Wikidata
Papers 10a
Evidência
🥇 Rev. sistemática
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