A Síndrome Fatal de Encefalocele Occipital e Displasia Esquelética é uma doença genética rara que afeta o desenvolvimento dos ossos, caracterizada pelo subdesenvolvimento dos ossos da nuca e laterais superiores do crânio (occipital e parietal), o que leva a uma encefalocele occipital (uma malformação onde parte do cérebro se projeta para fora através de uma abertura na parte de trás da cabeça). Outras características incluem defeitos na mineralização do crânio, cranioestenose (fechamento prematuro das suturas do crânio), fusões entre o rádio e o úmero (ossos do braço e antebraço), oligodactilia (número reduzido de dedos) e outras anomalias nos ossos, como: dedos longos e finos (aracnodactilia), ausência das últimas partes dos polegares, ausência dos dois dedões dos pés, angulação acentuada dos dois fêmures (ossos da coxa), membros (braços e pernas) encurtados e amadurecimento ósseo acelerado. É comumente associada à morte do feto ainda no útero.
Introdução
O que você precisa saber de cara
A Síndrome Fatal de Encefalocele Occipital e Displasia Esquelética é uma doença genética rara que afeta o desenvolvimento dos ossos, caracterizada pelo subdesenvolvimento dos ossos da nuca e laterais superiores do crânio (occipital e parietal), o que leva a uma encefalocele occipital (uma malformação onde parte do cérebro se projeta para fora através de uma abertura na parte de trás da cabeça). Outras características incluem defeitos na mineralização do crânio, cranioestenose (fechamento prematuro das suturas do crânio), fusões entre o rádio e o úmero (ossos do braço e antebraço), oligodactilia (número reduzido de dedos) e outras anomalias nos ossos, como: dedos longos e finos (aracnodactilia), ausência das últimas partes dos polegares, ausência dos dois dedões dos pés, angulação acentuada dos dois fêmures (ossos da coxa), membros (braços e pernas) encurtados e amadurecimento ósseo acelerado. É comumente associada à morte do feto ainda no útero.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 4 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 8 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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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.
A cytochrome P450 monooxygenase involved in the metabolism of retinoates (RAs), the active metabolites of vitamin A, and critical signaling molecules in animals (PubMed:10823918, PubMed:22020119). RAs exist as at least four different isomers: all-trans-RA (atRA), 9-cis-RA, 13-cis-RA, and 9,13-dicis-RA, where atRA is considered to be the biologically active isomer, although 9-cis-RA and 13-cis-RA also have activity (Probable). Catalyzes the hydroxylation of atRA primarily at C-4 and C-18, thereby
Endoplasmic reticulum membraneMicrosome membrane
Radiohumeral fusions with other skeletal and craniofacial anomalies
A disease characterized by craniofacial malformations, occipital encephalocele, radiohumeral fusions, oligodactyly, advanced osseous maturation, and calvarial mineralization defects.
Variantes genéticas (ClinVar)
29 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 9 variantes classificadas pelo ClinVar.
Vias biológicas (Reactome)
3 vias biológicas associadas aos genes desta condição.
Diagnóstico
Os sinais que médicos procuram e os exames que confirmam
Tratamento e manejo
Remédios, cuidados de apoio e o que precisa acompanhar
Onde tratar no SUS
Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)
🇧🇷 Atendimento SUS — Síndrome letal de encefalocelo occipital-displasia esquelética
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.
Publicações mais relevantes
Meckel-Gruber syndrome: a rare and fatal congenital disorder (case report).
Meckel-Gruber syndrome is a rare congenital disorder characterized by multiple malformations. It transmits via a recessive autosomal mode. It is characterized by an occipital encephalocele, polydactyly, and polycystic renal dysplasia. The diagnosis could be established via ultrasound. In fact, it is actually the key method for the early screening of this lethal malformation with at least two of its main characteristics. However, the diagnosis is confirmed by karyotype analysis. Herein, we present a case of Meckel-Gruber syndrome diagnosed in a fetus from a consanguineous marriage in a 40-year-old woman, gravida 2 para 1, with one previous healthy child. This pregnancy was terminated at 19 weeks of gestation. The diagnosis was made through prenatal ultrasound and magnetic resonance imaging (MRI). With later confirmation by fetal autopsy.
Whole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome.
Meckel syndrome (MKS) is a pre- or perinatal multisystemic ciliopathic lethal disorder with an autosomal recessive mode of inheritance. Meckel syndrome is usually manifested with meningo-occipital encephalocele, polycystic kidney dysplasia, postaxial polydactyly and hepatobiliary ductal plate malformation. Germline variants in CEP290 cause MKS4. In this study, we investigated a 35-years-old Chinese female who was 17+1 weeks pregnant. She had a history of adverse pregnancy of having foetus with multiple malformations. We performed ultrasonography and identified the foetus with occipital meningoencephalocele and enlarged cystic dysplastic kidneys. So, she decided to terminate her pregnancy and further genetic molecular analysis was performed. We identified the aborted foetus without postaxial polydactyly. Histological examination of foetal kidney showed cysts in kidney and thinning of the renal cortex with glomerular atrophy. Whole exome sequencing identified a novel homozygous variant (c.2144T>G; p.L715* ) in exon 21 of the CEP290 in the foetus. Sanger sequencing confirmed that both the parents of the foetus were carrying this variant in a heterozygous state. This variant was not identified in two elder sisters of the foetus as well as in the 100 healthy individuals. Western blot analysis showed that this variant leads to the formation of truncated CEP290 protein with the molecular weight of 84 KD compared with the wild-type CEP290 protein of 290 KD. Hence, it is a loss-of-function variant. We also found that the mutant cilium appears longer in length than the wild-type cilium. Our present study reported the first variant of CEP290 associated with MKS4 in Chinese population.
Meckel Gruber syndrome associated with anencephaly-an unusual reported case.
Meckel-Gruber syndrome (MGS) is a rare and lethal ciliopathic disorder, with the incidence ranging between 1 in 13 000-400 000 live births. MGS is characterized by multisystem developmental malformations with the classical features of renal cystic dysplasia, occipital encephalocele and post-axial polydactyly. Except for occipital encephalocele, the CNS abnormalities associated with MGS that are less frequently reported include hydrocephaly, anencephaly or malformation of cerebellum. Our presented case of MGS is associated with anencephaly and other facial abnormalities. This kind of ailment is infrequently reported in literature.
A nonsense mutation in CEP55 defines a new locus for a Meckel-like syndrome, an autosomal recessive lethal fetal ciliopathy.
Mutations in genes involved in the cilium-centrosome complex are called ciliopathies. Meckel-Gruber syndrome (MKS) is a ciliopathic lethal autosomal recessive syndrome characterized by genetically and clinically heterogeneous manifestations, including renal cystic dysplasia, occipital encephalocele and polydactyly. Several genes have previously been associated with MKS and MKS-like phenotypes, but there are still genes remaining to be discovered. We have used whole-exome sequencing (WES) to uncover the genetics of a suspected autosomal recessive Meckel syndrome phenotype in a family with 2 affected fetuses. RNA studies and histopathological analysis was performed for further delineation. WES lead to identification of a homozygous nonsense mutation c.256C>T (p.Arg86*) in CEP55 (centrosomal protein of 55 kDa) in the affected fetus. The variant has previously been identified in carriers in low frequencies, and segregated in the family. CEP55 is an important centrosomal protein required for the mid-body formation at cytokinesis. Our results expand the list of centrosomal proteins implicated in human ciliopathies and provide evidence for an essential role of CEP55 during embryogenesis and development of disease.
Uniparental disomy as an unexpected cause of Meckel-Gruber syndrome: report of a case.
Meckel-Gruber syndrome (MKS, OMIM #607361) is a rare pre- or perinatal lethal autosomal recessive ciliopathy caused by mutations in at least 12 known genes. It has a clinical and genetic overlap with other viable ciliopathies, especially Joubert syndrome and Joubert syndrome-related disorders. MKS is characterized by multicystic kidney dysplasia, central nervous system malformations (usually occipital encephalocele), ductal plate malformation of the liver, and postaxial polydactyly. We identified a homozygous mutation in TMEM67 (MKS3) in a fetus affected by MKS; however, only the mother was a carrier of the respective mutation. Genotyping with polymorphic microsatellite markers and single nucleotide polymorphism (SNP) array revealed a maternal uniparental disomy (UPD) of the entire chromosome 8 (upd(8)mat), harboring TMEM67. This is the first reported case of UPD as a cause of MKS. The possible underlying mechanisms for uniparental disomy (UPD) are reviewed. Even if rare, awareness of UPD and comprehensive work-up in the case of unexpected homozygosity for a recessive mutation is essential for accurate genetic counseling and assessment of the risk of recurrence.
Publicações recentes
CC2D2A mutations in Meckel and Joubert syndromes indicate a genotype-phenotype correlation.
Spine deformities in rare congenital syndromes: clinical issues.
Spectrum of MKS1 and MKS3 mutations in Meckel syndrome: a genotype-phenotype correlation. Mutation in brief #960. Online.
Meckel syndrome: genetics, perinatal findings, and differential diagnosis.
Molecular diagnostics of Meckel-Gruber syndrome highlights phenotypic differences between MKS1 and MKS3.
📚 EuropePMCmostrando 9
Meckel-Gruber syndrome: a rare and fatal congenital disorder (case report).
The Pan African medical journalWhole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome.
Journal of cellular and molecular medicineMeckel Gruber syndrome associated with anencephaly-an unusual reported case.
Oxford medical case reportsUniparental disomy as an unexpected cause of Meckel-Gruber syndrome: report of a case.
Pediatric nephrology (Berlin, Germany)A nonsense mutation in CEP55 defines a new locus for a Meckel-like syndrome, an autosomal recessive lethal fetal ciliopathy.
Clinical genetics[Meckel Gruber syndrome: about a rare case].
The Pan African medical journal[Prenatal diagnosis of Meckel-Gruber syndrome. Case report and literature review].
Ginecologia y obstetricia de MexicoA missense mutation in TMEM67 causes Meckel-Gruber syndrome type 3 (MKS3): a family from China.
International journal of clinical and experimental pathologyMeckel-Gruber Syndrome with unilateral renal agenesis.
Journal of the College of Physicians and Surgeons--Pakistan : JCPSPAssociações
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Comunidades
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Referências e fontes
Bases de dados externas citadas neste artigo
Publicações científicas
Artigos indexados no PubMed ligados a esta doença no grafo RarasNet — título, periódico e PMID direto da fonte, sem intermediação de IA.
- Meckel-Gruber syndrome: a rare and fatal congenital disorder (case report).
- Whole exome sequencing identified a homozygous novel variant in CEP290 gene causes Meckel syndrome.
- Meckel Gruber syndrome associated with anencephaly-an unusual reported case.
- A nonsense mutation in CEP55 defines a new locus for a Meckel-like syndrome, an autosomal recessive lethal fetal ciliopathy.
- Uniparental disomy as an unexpected cause of Meckel-Gruber syndrome: report of a case.
- CC2D2A mutations in Meckel and Joubert syndromes indicate a genotype-phenotype correlation.
- Spine deformities in rare congenital syndromes: clinical issues.
- Spectrum of MKS1 and MKS3 mutations in Meckel syndrome: a genotype-phenotype correlation. Mutation in brief #960. Online.
- Meckel syndrome: genetics, perinatal findings, and differential diagnosis.
- Molecular diagnostics of Meckel-Gruber syndrome highlights phenotypic differences between MKS1 and MKS3.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:293925(Orphanet)
- OMIM OMIM:614416(OMIM)
- MONDO:0013740(MONDO)
- GARD:17348(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q55784321(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