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Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial
ORPHA:166024CID-10 · Q77.3CID-11 · LD24.61OMIM 607131DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Sistema ósseoInício neonatalHerança AR
Sinônimos clínicos: Displasia epifisária múltipla, tipo Al-Gazali

A Displasia Epifisária Múltipla, tipo Al-Gazali, é uma doença que afeta o desenvolvimento dos ossos (displasia esquelética). Ela se caracteriza por um desenvolvimento anormal em várias epífises (as extremidades dos ossos), uma cabeça maior que o normal (macrocefalia) e características faciais diferentes do usual (dismorfismo facial).

Última verificação: Fonte: sem afirmação sobre o SUS a verificarEm construçãohistóricoSugerir correção
Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

💬
EM LINGUAGEM SIMPLES

A Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial é uma condição genética rara que afeta a formação e o crescimento das extremidades dos ossos. As famílias costumam notar que a criança tem a cabeça maior do que o esperado (**macrocefalia**), alterações no formato do peito, pernas voltadas para dentro e atraso no desenvolvimento motor. Não existem remédios para curar a síndrome, mas o cuidado de reabilitação auxilia na mobilidade e no suporte ao desenvolvimento diário. No SUS, estão previstos procedimentos como reabilitação para doenças raras e exames genéticos de alta precisão para a confirmação do diagnóstico.

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Informacoes curadas por IA — podem conter imprecisoes

A Displasia Epifisária Múltipla, tipo Al-Gazali, é uma doença que afeta o desenvolvimento dos ossos (displasia esquelética). Ela se caracteriza por um desenvolvimento anormal em várias epífises (as extremidades dos ossos), uma cabeça maior que o normal (macrocefalia) e características faciais diferentes do usual (dismorfismo facial).

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
4
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
5 procedimentos SIGTAPCID-10: Q77.3
🇧🇷Dados SUS / DATASUS
EXAMES E PROCEDIMENTOS RELACIONADOS (5)
•
Cariótipo — bandas G, Q ou R
•
Pesquisa de microdeleções/microduplicações por FISH
•
Sequenciamento completo do exoma (WES)
•
Dosagem de alfa-fetoproteína
•
Atendimento em reabilitação — doenças raras
Você se identifica com essa condição?
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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

🦴
Ossos e articulações
15 sintomas
🧠
Neurológico
5 sintomas
😀
Face
5 sintomas
🦷
Dentes
1 sintomas
🫃
Digestivo
1 sintomas
🩸
Sangue
1 sintomas

+ 10 sintomas em outras categorias

Características mais comuns

100%prev.
Macrocefalia
Muito frequente (99-80%)
100%prev.
Pectus excavatum
Muito frequente (99-80%)
100%prev.
Bossas frontais
Muito frequente (99-80%)
100%prev.
Sinal do dente molar na ressonância magnética
Muito frequente (99-80%)
100%prev.
Ponte nasal ampla
Muito frequente (99-80%)
100%prev.
Hipertelorismo
Muito frequente (99-80%)
39sintomas
Muito frequente (24)
Frequente (5)
Ocasional (2)
Muito raro (2)
Sem dados (6)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 39 características clínicas mais associadas, ordenadas por frequência.

MacrocefaliaMacrocephaly
Muito frequente (99-80%)100%
Muito frequente (99-80%)100%
Bossas frontaisFrontal bossing
Muito frequente (99-80%)100%
Muito frequente (99-80%)100%
Ponte nasal amplaWide nasal bridge
Muito frequente (99-80%)100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa11
Últimos 10 anos29publicações
Pico20189 papers
Linha do tempo
20202015Hoje · 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

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

KIF7Kinesin-like protein KIF7Disease-causing germline mutation(s) inTolerante
VIAS BIOLÓGICAS (2)
Hedgehog 'on' stateHedgehog 'off' state
EXPRESSÃO TECIDUAL(Ubíquo)
Cervix Ectocervix
23.0 TPM
Aorta
21.6 TPM
Ovário
20.7 TPM
Cervix Endocervix
20.1 TPM
Útero
19.2 TPM
OUTRAS DOENÇAS (5)
multiple epiphyseal dysplasia, Al-Gazali typehydrolethalus syndrome 2acrocallosal syndromehydrolethalus syndrome
HGNC:30497UniProt:Q2M1P5

Variantes genéticas (ClinVar)

276 variantes patogênicas registradas no ClinVar.

🧬 KIF7: NM_198525.3(KIF7):c.2934_2935delinsAT (p.Glu979Ter) ()
🧬 KIF7: NM_198525.3(KIF7):c.625del (p.His209fs) ()
🧬 KIF7: NM_198525.3(KIF7):c.1463_1472dup (p.Leu492fs) ()
🧬 KIF7: NM_198525.3(KIF7):c.2566dup (p.Met856fs) ()
🧬 KIF7: NM_198525.3(KIF7):c.370A>G (p.Met124Val) ()
Ver todas no ClinVar

Vias biológicas (Reactome)

2 vias biológicas associadas 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

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial

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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

Pesquisa e ensaios clínicos

Nenhum ensaio clínico registrado para esta condição.

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Publicações mais relevantes

Timeline de publicações
0 papers (10 anos)
#1

From Desbuquois Dysplasia to Multiple Epiphyseal Dysplasia: The Clinical Impact of a CANT1 Variant Across Five Unrelated Families.

American journal of medical genetics. Part A2025 Apr

Multiple epiphyseal dysplasia (MED) is a heterogeneous group of chondrodysplasia characterized by arthralgia, early onset osteoarthropathy, and the radiographic findings of small, flat, and irregular-shaped epiphyses. Some patients with MED have mild short stature as well. MED is genetically heterogeneous caused by pathogenic variants in COMP, MATN3, COL9A1, COL9A2, COL9A3, and SLC26A2. In 2017, pathogenic variants in CANT1, which are responsible for Desbuquois dysplasia, have also been reported in the genetic etiology of MED. To date, only three patients have been reported with CANT1-related MED. Herein, we present clinical and radiographic findings of six additional patients from five unrelated families, all sharing the same c.375G > C; p.(Trp125Cys) variant in CANT1 gene. These patients exhibited the features of multiple epiphyseal dysplasia, along with some similarities to Desbuquois dysplasia, thereby broadening the clinical spectrum of CANT1-related disorders.

#2

Atypical presentation of ACCES syndrome resembling dominant Spondyloepiphyseal dysplasia tarda.

American journal of medical genetics. Part A2024 Dec

Aplasia Cutis Congenita with Ectrodactyly Skeletal Syndrome (ACCES, OMIM #619959) is an extremely rare multiple congenital anomalies syndrome caused by haploinsufficiency of the UBA2 gene. This syndrome presents with growth retardation, dysmorphic facial features, neurodevelopmental delay, skeletal problems including ectrodactyly, developmental dysplasia of the hip (DDH) and scoliosis, skin findings such as aplasia cutis, and some internal organ abnormalities. Our 13-year-old female patient and her 38-year-old father had a skeletal dysplasia phenotype with disproportionate short stature, bilateral DDH, mild epiphyseal involvement, scoliosis, and increased lumbar lordosis. Both were neurodevelopmentally normal and had mild dysmorphic facial features and mild ectodermal findings. The dominant inheritance pattern in the pedigree suggested a pre-diagnosis of spondyloepiphyseal dysplasia tarda. The exome sequencing analysis of the patient has identified a novel heterozygous variant, NM_005499.2:c.460-2A >G, in the UBA2 gene, and the father was found heterozygous either. The isolated spondyloepiphyseal involvement of our patients was an unusual presentation compared to patients with ACCES syndrome previously reported in the literature. Considering the highly variable expressiveness of ACCES syndrome and the co-occurrence of familial hip dysplasia and vertebral problems, we suggest that this syndrome can also be classified under "Spondyloepi(meta)physial dysplasia (SE(M)D)" in the nosology of genetic skeletal disorders.

#3

How many phenotypes for the FBXO11 related disease? Report on a new patient with a tricho-rhino-phalangeal like phenotype.

European journal of medical genetics2024 Jun

Here we report the case of a young boy with developmental delay, thin sparse hair, early closure of the anterior fontanel, bilateral choanal atresia, brachyturicephaly; and dysmorphic features closely resembling those seen in trichorhinophalangeal syndrome (TRPS). These features include sparse hair, sparse lateral eyebrows, a bulbous pear shaped nose, a long philtrum, thin lips, small/hypoplastic nails, pes planovalgus; bilateral cone-shaped epiphyses at the proximal 5th phalanx, slender long bones, coxa valga, mild scoliosis, and delayed bone age. Given that TRPS had been excluded by a thorough genetic analysis, whole exome sequencing was performed and a heterozygous likely pathogenic variant was identified in the FBXO11 gene (NM_001190274.2: c.1781A > G; p. His594Arg), confirming the diagnosis of the newly individualized IDDFBA syndrome: Intellectual Developmental Disorder, dysmorphic Facies, and Behavioral Abnormalities (OMIM# 618,089). Our findings further delineate the clinical spectrum linked to FBXO11 and highlight the importance of investigating further cases with mutations in this gene to establish a potential genotype-phenotype correlation.

#4

Longitudinal skeletal growth and growth plate morphological characteristics of chondro-tissue specific CUL7 knockout mice.

Annals of anatomy = Anatomischer Anzeiger : official organ of the Anatomische Gesellschaft2024 Apr

3 M syndrome is first reported in 1975,which characterized by severe pre- and postnatal growth retardation, skeletal malformation and facial dysmorphism. These three genes (CUL7, OBSL1 and CCDC8) have been identified to be respond for 3 M syndrome, of which CUL7 is accounting for approximately 70%. To date, the molecular mechanism underlying the pathogenesis of 3 M syndrome remains poorly understood. Previous studies showed that no Cul7-/- mice could survive after birth, because of growth retardation at late gestational stage and respiratory distress after birth. The establishment of the animal model of cartilage specific Cul7 knockout mice (Cul7fl/fl;Col2a1-CreERT2 mice) has confirmed that Cul7fl/fl;Col2a1-CreERT2 mice can be selective in a time- and tissue-dependent manner, which can provide an experimental basis for further research on severe genetic diseases related to growth plates. To establish a model of Cul7fl/fl;Col2a1-CreERT2 mice based on Cre/LoxP system, and to further observe its phenotype and morphological changes in growth plate. The Cul7fl/fl;Col2a1-CreERT2 mice were taken as the experimental group, while the genotype of Cul7fl/+;Col2a1-CreERT2 mice were used as the control group. The gross morphological features and X-ray films of limbs in the two groups were observed every week for 3-6 consecutive weeks, and the length of the mice from nose to the tail, the length of femur and tibia were recorded. In the meantime, The histological morphology of tibial growth plates was compared between the two groups. A preliminary model of Cul7fl/fl;Col2a1-CreERT2 mice was established. The Cul7fl/fl;Col2a1-CreERT2 mice had abnormally short and deformed limbs (P<0.05), increased thickness of growth plate, the disorderly arranged chondrocyte columns, decreased number of cells in the proliferation zone, changes in the shape from flat to round, obviously expanded extracellular matrix, and disordered arrangement, thickening and loosening of bone trabecula at the proximal metaphysis of the femur. The knockout of Cul7 gene may affect both the proliferation of chondrocytes and the endochondral osteogenesis, confirming that Cul7 is essential for the normal development of bone in the body.

#5

Specific heterozygous variants in MGP lead to endoplasmic reticulum stress and cause spondyloepiphyseal dysplasia.

Nature communications2023 Nov 03

Matrix Gla protein (MGP) is a vitamin K-dependent post-translationally modified protein, highly expressed in vascular and cartilaginous tissues. It is a potent inhibitor of extracellular matrix mineralization. Biallelic loss-of-function variants in the MGP gene cause Keutel syndrome, an autosomal recessive disorder characterized by widespread calcification of various cartilaginous tissues and skeletal and vascular anomalies. In this study, we report four individuals from two unrelated families with two heterozygous variants in MGP, both altering the cysteine 19 residue to phenylalanine or tyrosine. These individuals present with a spondyloepiphyseal skeletal dysplasia characterized by short stature with a short trunk, diffuse platyspondyly, midface retrusion, progressive epiphyseal anomalies and brachytelephalangism. We investigated the cellular and molecular effects of one of the heterozygous deleterious variants (C19F) using both cell and genetically modified mouse models. Heterozygous 'knock-in' mice expressing C19F MGP recapitulate most of the skeletal anomalies observed in the affected individuals. Our results suggest that the main underlying mechanism leading to the observed skeletal dysplasia is endoplasmic reticulum stress-induced apoptosis of the growth plate chondrocytes. Overall, our findings support that heterozygous variants in MGP altering the Cys19 residue cause autosomal dominant spondyloepiphyseal dysplasia, a condition distinct from Keutel syndrome both clinically and molecularly.

Publicações recentes

Ver todas no PubMed

📚 EuropePMCmostrando 29

2025

From Desbuquois Dysplasia to Multiple Epiphyseal Dysplasia: The Clinical Impact of a CANT1 Variant Across Five Unrelated Families.

American journal of medical genetics. Part A
2024

Atypical presentation of ACCES syndrome resembling dominant Spondyloepiphyseal dysplasia tarda.

American journal of medical genetics. Part A
2024

How many phenotypes for the FBXO11 related disease? Report on a new patient with a tricho-rhino-phalangeal like phenotype.

European journal of medical genetics
2024

Longitudinal skeletal growth and growth plate morphological characteristics of chondro-tissue specific CUL7 knockout mice.

Annals of anatomy = Anatomischer Anzeiger : official organ of the Anatomische Gesellschaft
2023

Specific heterozygous variants in MGP lead to endoplasmic reticulum stress and cause spondyloepiphyseal dysplasia.

Nature communications
2023

[Clinical and genetic characteristics of 9 rare cases with coexistence of dual genetic diagnoses].

Zhonghua er ke za zhi = Chinese journal of pediatrics
2022

Functional outcomes are preserved in adult acetabular dysplasia with radiographic evidence of lumbosacral spine anomalies: an investigation in hip-spine syndrome.

BMC musculoskeletal disorders
2021

New Insights on the Genetic Basis Underlying SHILCA Syndrome: Characterization of the NMNAT1 Pathological Alterations Due to Compound Heterozygous Mutations and Identification of a Novel Alternative Isoform.

International journal of molecular sciences
2021

A new family with epiphyseal chondrodysplasia type Miura.

American journal of medical genetics. Part A
2020

Unique skeletal manifestations in patients with Primrose syndrome.

European journal of medical genetics
2018

Non-ossifying fibroma with a pathologic fracture in a 12-year-old girl with tricho-rhino-phalangeal syndrome: a case report.

BMC medical genetics
2018

Pathogenic gene screening in 91 Chinese patients with short stature of unknown etiology with a targeted next-generation sequencing panel.

BMC medical genetics
2018

An Infant With Neonatal Diabetes and Double Outlet Right Ventricle - Wolcott- Rallison syndrome.

Medical archives (Sarajevo, Bosnia and Herzegovina)
2018

Lowry-Wood syndrome: further evidence of association with RNU4ATAC, and correlation between genotype and phenotype.

Human genetics
2018

Description of the molecular and phenotypic spectrum of Wiedemann-Steiner syndrome in Chinese patients.

Orphanet journal of rare diseases
2018

Alu-Alu mediated intragenic duplications in IFT81 and MATN3 are associated with skeletal dysplasias.

Human mutation
2018

Expanding the phenotypic spectrum of variants in PDE4D/PRKAR1A: from acrodysostosis to acroscyphodysplasia.

European journal of human genetics : EJHG
2018

The expanding phenotype of RNU4ATAC pathogenic variants to Lowry Wood syndrome.

American journal of medical genetics. Part A
2018

Skeletal impairment in Pierson syndrome: Is there a role for lamininβ2 in bone physiology?

Bone
2017

Skull Base and Cervical Spine Involvement in Jansen Syndrome: Case Report.

Pediatric neurosurgery
2017

Chondrodysplasia with multiple dislocations: comprehensive study of a series of 30 cases.

Clinical genetics
2016

Genetics of gigantism and acromegaly.

Growth hormone &amp; IGF research : official journal of the Growth Hormone Research Society and the International IGF Research Society
2016

Beaulieu-Boycott-Innes syndrome: an intellectual disability syndrome with characteristic facies.

Clinical dysmorphology
2016

Syndrome disintegration: Exome sequencing reveals that Fitzsimmons syndrome is a co-occurrence of multiple events.

American journal of medical genetics. Part A
2015

Mutations in the heat-shock protein A9 (HSPA9) gene cause the EVEN-PLUS syndrome of congenital malformations and skeletal dysplasia.

Scientific reports
2016

Low-dose maternal warfarin intake resulting in fetal warfarin syndrome: In search for a safe anticoagulant regimen during pregnancy.

Birth defects research. Part A, Clinical and molecular teratology
2015

An atypical 0.73 MB microduplication of 22q11.21 and a novel SALL4 missense mutation associated with thumb agenesis and radioulnar synostosis.

American journal of medical genetics. Part A
2015

Phenotype and genotype in 103 patients with tricho-rhino-phalangeal syndrome.

European journal of medical genetics
2015

Radiographic features of the skeleton in disorders of post-squalene cholesterol biosynthesis.

Pediatric radiology

Associações

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Doença com base genética

Um médico geneticista pode ajudar no diagnóstico de Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial e no aconselhamento genético da família.

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Conselhos e sociedades

Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

Perguntas frequentes

O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu

Respostas geradas por IA a partir das fontes citadas

A condição é causada por mutações genéticas no gene **KIF7**. Ela é transmitida de forma autossômica recessiva, quando ambos os pais transmitem uma cópia com alteração do gene.

Referências

Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete

10 publicações do grafo RarasNet (PubMed) · 6 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. Longitudinal skeletal growth and growth plate morphological characteristics of chondro-tissue specific CUL7 knockout mice.
    Annals of anatomy = Anatomischer Anzeiger : official organ of the Anatomische Gesellschaft2024PMID 38367951
  2. ORPHA:166024
    Orphanet
  3. GARD:17014
    GARD (NIH)

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.

Citar este verbete

Raras. (s.d.). Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/sindrome-de-displasia-epifisaria-multipla-macrocefalia-dismorfia-facial

Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Compêndio · Raras BR

Síndrome de displasia epifisária múltipla-macrocefalia-dismorfia facial

ORPHA:166024 · MONDO:0011778
🇧🇷 Brasil SUS
SIGTAP
5 procedimentos
Geral
Prevalência
<1 / 1 000 000
Casos
4 casos conhecidos
Herança
Autosomal recessive
CID-10
Q77.3 · Condrodisplasia puntacta
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C4304500

📋 Origem dos dados

Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.

Doença rara (ontologia)
fonte: Orphanet
Identificador unificado
fonte: MONDO
Genética mendeliana
fonte: OMIM
Indexação biomédica
fonte: MeSH (NLM)
Rara