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Síndrome Lamb-Shaffer
ORPHA:530983CID-10 · Q87.8OMIM 616803DOENÇA RARA

Wolfgang Amadeus Mozart apresentava humor escatológico nas suas cartas e múltiplas composições recreativas. Este material tem sido um enigma para os estudiosos de Mozart. Alguns académicos tentam entende-lo no que toca ao seu papel na família Mozart, na sua sociedade e nos seus tempos; outros tentam entende-lo como um resultado de uma "lista impressionante" de condições psiquiátricas do qual se diz que Mozart teria.

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Introdução

O que você precisa saber de cara

📋

Síndrome Lamb-Shaffer é uma condição rara com herança autossômica dominante, caracterizada por assimetria facial, micrognatia, ponte nasal ampla, boca aberta, miopia e cifose torácica. Pode apresentar deficiência intelectual leve e retardo de crescimento pós-natal.

Publicações científicas
24 artigos
Último publicado: 2026 Mar 6

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
70
pacientes catalogados
Início
Infancy
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q87.8
🇧🇷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
Você se identifica com essa condição?
O Raras está aqui pra te apoiar — com ou sem diagnóstico

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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

🧠
Neurológico
13 sintomas
😀
Face
10 sintomas
🦴
Ossos e articulações
9 sintomas
👁️
Olhos
4 sintomas
👂
Ouvidos
3 sintomas
📏
Crescimento
2 sintomas

+ 12 sintomas em outras categorias

Características mais comuns

90%prev.
Habilidade atrasada de andar
Muito frequente (99-80%)
90%prev.
Dificuldade específica de aprendizagem
Muito frequente (99-80%)
90%prev.
Formato facial anormal
Muito frequente (99-80%)
90%prev.
Deficiência intelectual
Muito frequente (99-80%)
90%prev.
Atraso global do desenvolvimento
Muito frequente (99-80%)
55%prev.
Deficiência intelectual, leve
Frequente (79-30%)
55sintomas
Muito frequente (5)
Frequente (4)
Ocasional (26)
Muito raro (4)
Sem dados (16)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 55 características clínicas mais associadas, ordenadas por frequência.

Habilidade atrasada de andarDelayed ability to walk
Muito frequente (99-80%)90%
Dificuldade específica de aprendizagemSpecific learning disability
Muito frequente (99-80%)90%
Formato facial anormalAbnormal facial shape
Muito frequente (99-80%)90%
Deficiência intelectualIntellectual disability
Muito frequente (99-80%)90%
Atraso global do desenvolvimentoGlobal developmental delay
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico24PubMed
Últimos 10 anos24publicações
Pico20258 papers
Linha do tempo
2026Hoje · 2026📈 2025Ano 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 dominant.

SOX5Transcription factor SOX-5Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Transcription factor involved in chondrocytes differentiation and cartilage formation. Specifically binds the 5'-AACAAT-3' DNA motif present in enhancers and super-enhancers and promotes expression of genes important for chondrogenesis, including cartilage matrix protein-coding genes, such as COL2A1 and AGC1. Required for overt chondrogenesis when condensed prechondrocytes differentiate into early stage chondrocytes: SOX5 and SOX6 cooperatively bind with SOX9 on active enhancers and super-enhanc

LOCALIZAÇÃO

Nucleus

MECANISMO DE DOENÇA

Lamb-Shaffer syndrome

An autosomal dominant, neurodevelopmental disorder characterized by global developmental delay, intellectual disability, language and motor impairment, and distinct facial features. Additional variable skeletal abnormalities may also be present.

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
15.3 TPM
Artéria tibial
8.4 TPM
Cervix Endocervix
7.2 TPM
Nervo tibial
6.7 TPM
Cervix Ectocervix
6.4 TPM
OUTRAS DOENÇAS (4)
Lamb-Shaffer syndromelarge congenital melanocytic nevusdevelopmental and speech delay due to SOX5 deficiency12p12.1 microdeletion syndrome
HGNC:11201UniProt:P35711

Variantes genéticas (ClinVar)

207 variantes patogênicas registradas no ClinVar.

🧬 SOX5: GRCh38/hg38 12p13.33-11.1(chr12:64621-34650483)x3 ()
🧬 SOX5: NM_006940.6(SOX5):c.1744C>T (p.His582Tyr) ()
🧬 SOX5: NM_006940.6(SOX5):c.2249A>G (p.Tyr750Cys) ()
🧬 SOX5: NM_006940.6(SOX5):c.943C>G (p.Pro315Ala) ()
🧬 SOX5: GRCh38/hg38 12p13.33-q13.12(chr12:82453-49847230)x3 ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 119 variantes classificadas pelo ClinVar.

77
30
12
Patogênica (64.7%)
VUS (25.2%)
Benigna (10.1%)
VARIANTES MAIS SIGNIFICATIVAS
SOX5: NM_006940.6(SOX5):c.1004dup (p.Leu336fs) [Pathogenic]
SOX5: NM_006940.6(SOX5):c.1489del [Pathogenic]
SOX5: NM_006940.6(SOX5):c.1342+1_1342+4delinsATAT [Pathogenic]
SOX5: NM_006940.6(SOX5):c.1760G>A (p.Ser587Asn) [Likely pathogenic]
SOX5: NC_000012.11:g.(23908659_23998916)_(24102605_?)del [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 Lamb-Shaffer

🗺️

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
24 papers (10 anos)
#1

Lamb-Shaffer syndrome in a Chinese adolescent: A case report.

Medicine2026 Mar 06

Lamb-Shaffer syndrome (LAMSHF) is a rare neurodevelopmental disorder caused by pathogenic variants in the SRY-related high-mobility group box 5 (SOX5) gene. Clinical features are heterogeneous, and novel variants continue to be reported, expanding the genotypic and phenotypic spectrum of the disease. A 15-year-old male presented with short stature, mild intellectual disability, epilepsy, and multiple congenital anomalies, including facial dysmorphism and right thumb syndactyly. Whole-exome sequencing identified a novel heterozygous variant in the SOX5 gene, c.1160G>A (p.Ser387Asn), located at 12p12.1. Although initially classified as a variant of uncertain significance according to ACMG criteria, its strong correlation with the clinical phenotype supported the diagnosis of LAMSHF. The patient has been maintained on levetiracetam for epilepsy management and is receiving dental care for maxillofacial deformities. A multidisciplinary rehabilitation approach is recommended. Seizures are well-controlled with no recurrence. The patient demonstrates stable cognitive and functional status under current supportive care. This case reports a novel SOX5 variant associated with LAMSHF and highlights the importance of genetic confirmation in patients with unexplained neurodevelopmental features to guide appropriate management and avoid unnecessary interventions.

#2

Congenital core myopathy linked to SOX5: Expanding the phenotypical spectrum of Lamb-Shaffer syndrome.

Journal of neuromuscular diseases2026 Feb 25

Haploinsufficiency of SOX5 causes Lamb-Shaffer syndrome, a rare condition with developmental delay, impaired language and intellectual disability and optic nerve abnormalities. Muscle involvement is poorly characterized. We report a 20-year-old woman with neonatal hypotonia, delayed motor milestones, proximal weakness and learning difficulties. Serum creatine kinase was normal. Electroneuromyography revealed a mild myogenic pattern. Muscle biopsy revealed myopathic changes, with cores and protein aggregates. Whole genome sequencing disclosed a heterozygous pathogenic variant in the SOX5 gene. This case expands the phenotypic spectrum of Lamb-Shaffer syndrome, confirming primary muscle involvement with core myopathy.

#3

[Clinical phenotypes and genetic analysis of five children with Lamb-Shaffer syndrome due to novel variants of SOX5 gene].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics2026 Jan 10

To explore the clinical phenotypes and genetic characteristics of five children with Lamb-Shaffer syndrome (LAMSHF). Five children with LAMSHF diagnosed at the Department of Pediatrics, the First Medical Center of Chinese PLA General Hospital from April 2021 to December 2024 were selected as study subjects. Clinical data of the children was collected. Genomic DNA was extracted from peripheral blood samples of the children and their parents. Whole exome sequencing (WES) was carried out to screen for variants. This study was approved by the Medical Ethics Committee of the Chinese PLA General Hospital (Ethics No.: S2025-411-01). All five children had presented with global developmental delay. Among them, two had manifestations of autism spectrum disorder, two had abnormal electroencephalogram findings, four had abnormal MRI results, and two had ocular abnormalities. WES has detected five novel variants in the SOX5 gene. Among these, c.1771G>C (p.Gly591Arg) was unreported previously. Sanger sequencing confirmed that none of the parents had carried the same variants, suggesting that they were all de novo variants. According to the guidelines from the American College of Medical Genetics and Genomics (ACMG), two nonsense variants and one missense variant were classified as pathogenic, whilst two missense variants were classified as likely pathogenic. This study has clarified the correlation between the clinical phenotypes of five children with LAMSHF and variants of the SOX5 gene, which expanded the mutational spectrum of the SOX5 gene and provided a basis for the clinical diagnosis and genetic counseling.

#4

Functional characterization of SOX5 variant causing Lamb-Shaffer syndrome and literature review of variants in the SOX5 gene.

Orphanet journal of rare diseases2025 Jun 11

Lamb-Shaffer syndrome (LAMSHF, OMIM 616803) is a neurodevelopmental disorder caused by mutations in the SRY-box transcription factor 5 (SOX5) gene. The SOX5 protein is a conserved transcription factor with a high-mobility-group domain that enhances the expression of various extracellular matrix genes by promoting SOX9 binding to a distant enhancer of the target gene. We reported a 7-year-old boy with severe intellectual disability, seizures, autism, strabismus, and myopia, who carries a novel SOX5 gene variant (c.1769T > C, p.Leu590Ser) inherited from his mother, who has a milder phenotype. We conducted in vitro assays to evaluate the effects of this variant and performed a literature review to explore the clinical and genetic spectrum of LAMSHF. In silico and in vitro data suggest that the SOX5 missense variant (c.1769T > C, p.Leu590Ser) may be pathogenic due to reduced transcriptional activation activity. Common characteristics of LAMSHF include intellectual disability, language delay, hypotonia, strabismus, autism spectrum disorder, seizures, and dysmorphic facial features. Although no clear genotype-phenotype association was found in LAMSHF, variable expressivity was noted. Our findings expand the genetic spectrum of LAMSHF and highlight the intrafamilial variability in severity among affected individuals. This study provides a comprehensive overview of the clinical manifestations of LAMSHF, aiding in diagnosis and genetic counseling.

#5

A missense variant in the SOX5 gene (c.221C > T) is associated with intellectual disability.

Orphanet journal of rare diseases2025 Feb 04

The SOX5 gene has been identified as the pathogenic gene responsible for Lamb-Shaffer syndrome. In this study, we examined the SOX5 variant (c.221C > T, p.Thr74Met) within a Chinese family presenting with intellectual disability and evaluated the functional implications of SOX5 by in vitro experiment. The family underwent a clinical assessment of intellectual development, which included precise clinical exome sequencing to identify causative genetic variants. The potential deleterious effects and pathogenicity of the variant were predicted using bioinformatics tools such as Mutation Taster, PROVEAN, and SIFT. Additionally, protein stability was evaluated using I-Mutant, and 3D protein structures were modeled with I-TASSER. Western blots and QPCR were employed to assess gene expression and protein stability. Flow cytometry was utilized to compare the cell cycle dynamics between wild-type and mutant cells. A previously identified missense variant (c.221C > T) in the SOX5 gene was determined to be the underlying cause of intellectual disability in a Chinese family. Functional assays demonstrated that mutant cells exhibited increased levels of SOX5 mRNA and protein relative to wild-type cells, accompanied by enhanced protein stability. Additionally, the mutant SOX5 protein was found to alter the cell cycle and downregulate the mRNA expression levels of the ACAN, AXIN2, SOX9, and PDGFRA genes. We confirmed that the SOX5 p.Thr74Met variant is associated with intellectual disability in a second-generation Chinese family. This mutant protein potentially exhibits increased stability, influences the cell cycle, and downregulates genes related to bone and neural functions.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC19 artigos no totalmostrando 23

2026

Lamb-Shaffer syndrome in a Chinese adolescent: A case report.

Medicine
2026

Congenital core myopathy linked to SOX5: Expanding the phenotypical spectrum of Lamb-Shaffer syndrome.

Journal of neuromuscular diseases
2026

[Clinical phenotypes and genetic analysis of five children with Lamb-Shaffer syndrome due to novel variants of SOX5 gene].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2025

Risperidone-Induced Paradoxical Agitation in a Child With Lamb-Shaffer Syndrome, Autism Spectrum Disorder, and Attention Deficit Hyperactivity Disorder: A Case Report.

Cureus
2025

[SOX5: A core transcription factor from development to multi-system disease regulation].

Sheng li xue bao : [Acta physiologica Sinica]
2025

Functional characterization of SOX5 variant causing Lamb-Shaffer syndrome and literature review of variants in the SOX5 gene.

Orphanet journal of rare diseases
2025

Optic atrophy in Lamb-Shaffer syndrome: two case presentations with ophthalmic imaging studies.

Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus
2025

Bilateral Iris and Chorioretinal Colobomas in a Child With Suspected Lamb-Shaffer Syndrome.

Ophthalmic surgery, lasers &amp; imaging retina
2025

A missense variant in the SOX5 gene (c.221C > T) is associated with intellectual disability.

Orphanet journal of rare diseases
2025

[Clinical and genetic analysis of a child with Lamb-Shaffer syndrome due to a de novo variant of SOX5 gene].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2024

Clinical cases series and pathogenesis of Lamb-Shaffer syndrome in China.

Orphanet journal of rare diseases
2024

Ophthalmic features of Lamb-Shaffer syndrome: a case series.

Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus
2024

The role of multidisciplinary diagnostic and therapeutic model of care in Lamb-Shaffer syndrome - case report.

Journal of applied genetics
2023

Lamb-Shaffer syndrome: 20 Spanish patients and literature review expands the view of neurodevelopmental disorders caused by SOX5 haploinsufficiency.

Clinical genetics
2023

SOX5: Lamb-Shaffer syndrome-A case series further expanding the phenotypic spectrum.

American journal of medical genetics. Part A
2023

Clinical characterization of Lamb-Shaffer syndrome: a case report and literature review.

BMC medical genomics
2023

Ophthalmic manifestations of Lamb-Shaffer syndrome: a case presentation and literature review.

Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus
2022

SoxD genes are required for adult neural stem cell activation.

Cell reports
2021

[Variant analysis of SOX5 gene in a Lamb-Shaffer syndrome family].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2020

A SOX5 gene variant as a possible contributor to short stature.

Endocrinology, diabetes &amp; metabolism case reports
2021

Clinical spectrum and follow-up in six individuals with Lamb-Shaffer syndrome (SOX5).

American journal of medical genetics. Part A
2020

Widening of the genetic and clinical spectrum of Lamb-Shaffer syndrome, a neurodevelopmental disorder due to SOX5 haploinsufficiency.

Genetics in medicine : official journal of the American College of Medical Genetics
2018

Clinical and genetic characterization of a patient with SOX5 haploinsufficiency caused by a de novo balanced reciprocal translocation.

Gene

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

Ainda não existe comunidade no Raras para Síndrome Lamb-Shaffer

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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. Lamb-Shaffer syndrome in a Chinese adolescent: A case report.
    Medicine· 2026· PMID 41790631mais citado
  2. Congenital core myopathy linked to SOX5: Expanding the phenotypical spectrum of Lamb-Shaffer syndrome.
    Journal of neuromuscular diseases· 2026· PMID 41739084mais citado
  3. [Clinical phenotypes and genetic analysis of five children with Lamb-Shaffer syndrome due to novel variants of SOX5 gene].
    Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics· 2026· PMID 41621840mais citado
  4. Functional characterization of SOX5 variant causing Lamb-Shaffer syndrome and literature review of variants in the SOX5 gene.
    Orphanet journal of rare diseases· 2025· PMID 40500800mais citado
  5. A missense variant in the SOX5 gene (c.221C&#x2009;&gt;&#x2009;T) is associated with intellectual disability.
    Orphanet journal of rare diseases· 2025· PMID 39905544mais citado
  6. Risperidone-Induced Paradoxical Agitation in a Child With Lamb-Shaffer Syndrome, Autism Spectrum Disorder, and Attention Deficit Hyperactivity Disorder: A Case Report.
    Cureus· 2025· PMID 41531626recente
  7. [SOX5: A core transcription factor from development to multi-system disease regulation].
    Sheng Li Xue Bao· 2025· PMID 41423973recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:530983(Orphanet)
  2. OMIM OMIM:616803(OMIM)
  3. MONDO:0014778(MONDO)
  4. GARD:22211(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Artigo Wikipedia(Wikipedia)

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 Lamb-Shaffer
Compêndio · Raras BR

Síndrome Lamb-Shaffer

ORPHA:530983 · MONDO:0014778
Prevalência
<1 / 1 000 000
Casos
70 casos conhecidos
Herança
Autosomal dominant
CID-10
Q87.8 · Outras síndromes com malformações congênitas especificadas, não classificadas em outra parte
Início
Infancy
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C4225202
EuropePMC
Wikipedia
Papers 10a
DiscussaoAtiva

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