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Síndrome Waardenburg-Shah
ORPHA:897CID-10 · Q87.8CID-11 · LD2H.3OMIM 277580DOENÇA RARA

A síndrome de Waardenburg-Shah (WSS) é uma neurocristopatia caracterizada pela associação da síndrome de Waardenburg (perda auditiva neurossensorial e anormalidades pigmentares) e doença de Hirschsprung.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

A síndrome de Waardenburg-Shah (WSS) é uma neurocristopatia caracterizada pela associação da síndrome de Waardenburg (perda auditiva neurossensorial e anormalidades pigmentares) e doença de Hirschsprung.

Publicações científicas
47 artigos
Último publicado: 2026

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
100
pacientes catalogados
Início
Neonatal
🏥
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
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Sinais e sintomas

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

Partes do corpo afetadas

👁️
Olhos
7 sintomas
😀
Face
5 sintomas
🫃
Digestivo
5 sintomas
🧠
Neurológico
5 sintomas
🧬
Pele e cabelo
3 sintomas
👂
Ouvidos
2 sintomas

+ 8 sintomas em outras categorias

Características mais comuns

90%prev.
Deficiência auditiva
Muito frequente (99-80%)
90%prev.
Morfologia anormal do intestino
Muito frequente (99-80%)
90%prev.
Anormalidade do olho
Muito frequente (99-80%)
90%prev.
Sobrancelha branca
Muito frequente (99-80%)
90%prev.
Hipopigmentação do cabelo
Muito frequente (99-80%)
90%prev.
Morfologia anormal da sobrancelha
Muito frequente (99-80%)
38sintomas
Muito frequente (14)
Frequente (7)
Ocasional (2)
Sem dados (15)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 38 características clínicas mais associadas, ordenadas por frequência.

Deficiência auditivaHearing impairment
Muito frequente (99-80%)90%
Morfologia anormal do intestinoAbnormal intestine morphology
Muito frequente (99-80%)90%
Anormalidade do olhoAbnormality of the eye
Muito frequente (99-80%)90%
Sobrancelha brancaWhite eyebrow
Muito frequente (99-80%)90%
Hipopigmentação do cabeloHypopigmentation of hair
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico47PubMed
Últimos 10 anos20publicações
Pico20254 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

4 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Autosomal recessive.

MITFMicrophthalmia-associated transcription factorDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Transcription factor that acts as a master regulator of melanocyte survival and differentiation as well as melanosome biogenesis (PubMed:10587587, PubMed:22647378, PubMed:27889061, PubMed:9647758). Binds to M-boxes (5'-TCATGTG-3') and symmetrical DNA sequences (E-boxes) (5'-CACGTG-3') found in the promoter of pigmentation genes, such as tyrosinase (TYR) (PubMed:10587587, PubMed:22647378, PubMed:27889061, PubMed:9647758). Involved in the cellular response to amino acid availability by acting down

LOCALIZAÇÃO

NucleusCytoplasmLysosome membrane

VIAS BIOLÓGICAS (2)
Transcriptional and post-translational regulation of MITF-M expression and activitySUMOylation of transcription factors
MECANISMO DE DOENÇA

Waardenburg syndrome 2A

WS2 is a genetically heterogeneous, autosomal dominant disorder characterized by sensorineural deafness, pigmentary disturbances, and absence of dystopia canthorum. The frequency of deafness is higher in WS2 than in WS1.

EXPRESSÃO TECIDUAL(Ubíquo)
Cervix Ectocervix
70.8 TPM
Cervix Endocervix
58.0 TPM
Útero
57.6 TPM
Músculo esquelético
25.9 TPM
Esôfago - Muscular
24.4 TPM
OUTRAS DOENÇAS (9)
Waardenburg syndrome type 2ATietz syndromecoloboma, osteopetrosis, microphthalmia, macrocephaly, albinism, and deafnesspapillary renal cell carcinoma
HGNC:7105UniProt:O75030
EDNRBEndothelin receptor type BDisease-causing germline mutation(s) inRestrito
FUNÇÃO

Non-specific receptor for endothelin 1, 2, and 3. Mediates its action by association with G proteins that activate a phosphatidylinositol-calcium second messenger system

LOCALIZAÇÃO

Cell membrane

VIAS BIOLÓGICAS (3)
G alpha (q) signalling eventsPeptide ligand-binding receptorsTranscriptional and post-translational regulation of MITF-M expression and activity
MECANISMO DE DOENÇA

Waardenburg syndrome 4A

A disorder characterized by the association of Waardenburg features (depigmentation and deafness) with the absence of enteric ganglia in the distal part of the intestine (Hirschsprung disease).

EXPRESSÃO TECIDUAL(Ubíquo)
Adipose Visceral Omentum
73.2 TPM
Pulmão
65.4 TPM
Tecido adiposo
60.6 TPM
Brain Caudate basal ganglia
48.8 TPM
Mama
45.5 TPM
OUTRAS DOENÇAS (6)
Waardenburg syndrome type 4AABCD syndromeWaardenburg syndrome type 2Waardenburg-Shah syndrome
HGNC:3180UniProt:P24530
EDN3Endothelin-3Disease-causing germline mutation(s) inModerado
FUNÇÃO

Endothelins are endothelium-derived vasoconstrictor peptides

LOCALIZAÇÃO

Secreted

VIAS BIOLÓGICAS (3)
G alpha (q) signalling eventsPeptide ligand-binding receptorsTranscriptional and post-translational regulation of MITF-M expression and activity
MECANISMO DE DOENÇA

Hirschsprung disease 4

A disorder of neural crest development characterized by absence of enteric ganglia along a variable length of the intestine. It is the most common cause of congenital intestinal obstruction. Early symptoms range from complete acute neonatal obstruction, characterized by vomiting, abdominal distention and failure to pass stool, to chronic constipation in the older child.

EXPRESSÃO TECIDUAL(Ubíquo)
Vagina
141.1 TPM
Tireoide
34.8 TPM
Glândula salivar
26.3 TPM
Esôfago - Mucosa
24.2 TPM
Intestino delgado
19.7 TPM
OUTRAS DOENÇAS (5)
Waardenburg syndrome type 4BWaardenburg-Shah syndromecentral hypoventilation syndrome, congenital, 1, with or without Hirschsprung diseaseHirschsprung disease
HGNC:3178UniProt:P14138
SOX10Transcription factor SOX-10Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Transcription factor that plays a central role in developing and mature glia (By similarity). Specifically activates expression of myelin genes, during oligodendrocyte (OL) maturation, such as DUSP15 and MYRF, thereby playing a central role in oligodendrocyte maturation and CNS myelination (By similarity). Once induced, MYRF cooperates with SOX10 to implement the myelination program (By similarity). Transcriptional activator of MITF, acting synergistically with PAX3 (PubMed:21965087). Transcript

LOCALIZAÇÃO

CytoplasmNucleusMitochondrion outer membrane

VIAS BIOLÓGICAS (4)
EGR2 and SOX10-mediated initiation of Schwann cell myelinationRegulation of CDH19 Expression and FunctionTranscriptional and post-translational regulation of MITF-M expression and activityRegulation of MITF-M-dependent genes involved in pigmentation
MECANISMO DE DOENÇA

Waardenburg syndrome 2E

An autosomal dominant auditory-pigmentary disorder characterized by sensorineural deafness, pigmentary disturbances of the hair, skin and eyes, and absence of dystopia canthorum which is the lateral displacement of the inner canthus of each eye. Individuals with WS2E may have neurologic abnormalities, including mental impairment, myelination defects, and ataxia. Some patients can manifest features of Kallmann syndrome.

OUTRAS DOENÇAS (6)
Waardenburg syndrome type 4CWaardenburg syndrome type 2EPCWH syndromeKallmann syndrome
HGNC:11190UniProt:P56693

Variantes genéticas (ClinVar)

560 variantes patogênicas registradas no ClinVar.

🧬 SOX10: NM_006941.4(SOX10):c.378C>G (p.Tyr126Ter) ()
🧬 SOX10: NM_006941.4(SOX10):c.1355C>T (p.Pro452Leu) ()
🧬 SOX10: NM_006941.4(SOX10):c.233del (p.Gln78fs) ()
🧬 SOX10: NM_006941.4(SOX10):c.192_193del (p.Asp64fs) ()
🧬 SOX10: NM_006941.4(SOX10):c.524C>T (p.Pro175Leu) ()
Ver todas no ClinVar

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 Waardenburg-Shah

🗺️

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

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Publicações mais relevantes

Timeline de publicações
21 papers (10 anos)
#1

Discovery of oligodendrocyte enhancers that regulate Sox10 expression.

PLoS genetics2025 Jul

Oligodendrocytes (OLs) assemble myelin sheaths around axons in central nervous system (CNS). Myelin is essential for the saltatory conduction of action potentials and also performs other critical functions for the operation of the CNS. Sox10 (SRY-box containing gene 10) is a high-mobility group transcription factor that orchestrates the development of OLs. Despite its key role in OL biology, there is scant information on how the expression of Sox10 is regulated in OL lineage cells. Especially, OL enhancers that control its transcription remain elusive. We have recently developed an innovative method that rationally links OL enhancers to target genes. This study applied the new method to Sox10, uncovering two OL enhancers for it (termed Sox10-E1 and Sox10-E2). Epigenome editing analysis revealed that Sox10-E1 and Sox10-E2 regulate Sox10 expression non-redundantly. Luciferase assay and human and mouse brain multi-omics data show that, during the differentiation of OL precursor cells (OPCs) into OLs, the enhancer activity of Sox10-E1 does not change while that of Sox10-E2 decreases significantly. Chromatin interaction data indicate that the two Sox10 enhancers lie close to the border of the Sox10 topologically associating domain (TAD). Consistently, Pick1, a gene that is near the Sox10 TAD border, is also under the transcriptional control of Sox10-E1 and Sox10-E2. Hence, genomic deletions involving Sox10-E1 and Sox10-E2 would perturb not only SOX10, but also PICK1 and other genes, and may cause a pathology that is more complex than that of conventional Waardenburg-Shah syndrome that results from SOX10 coding mutations.

#2

Pathology Seen in Myenteric Plexus in Two Subjects With Waardenburg Syndrome.

Neurogastroenterology and motility2025 Dec

The aim was to assess the neuroglial compartment in the myenteric plexus of two subjects with genetically verified Waardenburg syndrome (WS) type 4 (WS4) and to compare the outcome with four "age-matched" controls. Gut samples from four control cases and from two newborn subjects with WS4, one with peripheral demyelinating neuropathy, dysmyelinating leukodystrophy, WS and Hirschprung disease (PCWH) (SOX10, c.769A>T, p.Lys257*) and one with Waardenburg-Shah syndrome (WSS) (EDN3, c.472C>T,p.Arg158Cys)-were assessed histologically and immunohistochemically. Antibodies directed to glial cells (SOX10), ganglion cells (HuC/D), and interstitial cells of Cajal (CD117) were applied. For the child with PCWH syndrome, both the small and large intestine showed a reduction in the number of glial cells (SOX10), in parallel with hypoganglionosis (HuC/D), when compared with "age-matched" controls. In the child with WSS, a severe reduction in the number of glial cells (SOX10) was observed in both the small and large intestine accompanied by aganglionosis (HuC/D) with a skipped segment. The number of interstitial cells of Cajal (CD117) appeared unaffected in both PCWH and WSS cases. A severe reduction of glial cells and a severe reduction or loss of ganglion cells (the number of cells assessed per unit length), were seen in our study subjects when compared with "age-matched" controls. Contrary to the above the presence of Cajal cells was unaffected.

#3

Erratum: Placode and neural crest origins of congenital deafness in mouse models of Waardenburg-Shah syndrome.

iScience2025 May 16

[This corrects the article DOI: 10.1016/j.isci.2024.111680.].

#4

Placode and neural crest origins of congenital deafness in mouse models of Waardenburg-Shah syndrome.

iScience2025 Jan 17

Mutations in the human genes encoding the endothelin ligand-receptor pair EDN3 and EDNRB cause Waardenburg-Shah syndrome (WS4), which includes congenital hearing impairment. The current explanation for auditory dysfunction is defective migration of neural crest-derived melanocytes to the inner ear. We explored the role of endothelin signaling in auditory development in mice using neural crest-specific and placode-specific Ednrb mutation plus related genetic resources. On an outbred strain background, we find a normal representation of melanocytes in hearing-impaired mutant mice. Instead, our results in neural crest-specific Ednrb mutants implicate a previously unrecognized role for glial support of synapse assembly between auditory neurons and cochlear hair cells. Placode-specific Ednrb mutation also caused impaired hearing, resulting from deficient synaptic transmission. Our observations demonstrate the significant influence of genetic modifiers in auditory development, and invoke independent and separable roles for endothelin signaling in the neural crest and placode lineages to create a functional auditory circuitry.

#5

Syndromic Association of Depigmentation With Congenital Hearing Loss: A Review of Three Children With Auditory Pigmentary Disorders.

Ear, nose, &amp; throat journal2024 Dec 06

Background: Congenital depigmentation may be associated with congenital sensorineural hearing loss leading to non-development of verbal speech. Objective: To illustrate the clinical features and work-up of 3 children diagnosed with auditory pigmentary disorders (APDs). Methodology: Case series with a review of the literature. Results: The APDs presented here in the 3 children include Waardenburg syndrome type 1, Clouston syndrome, and Waardenburg syndrome type 4 (Waardenburg-Shah syndrome). The characteristic clinical features, audiologic tests, imaging, and the necessary genetic tests carried out subsequently were noted and evaluated. All the children were male and were aged 2 years, 1 year, and 14 months, respectively. All of them had hearing loss and non-development of verbal speech and had some form of oculocutaneous depigmentation. The challenges in the diagnosis, the work-up, and the close differentials were discussed, and the relevant literature was reviewed. Conclusions: The APDs connect congenital depigmentation with prelingual hearing loss through various syndromic disorders. These disorders are not commonly encountered in routine clinical practice; therefore, their proper knowledge is essential for early diagnosis of congenital hearing loss and timely initiation of auditory and speech rehabilitation. This case series deals with a detailed illustration of a few syndromes of the APDs and highlights their clinical presentation and genetic background.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC19 artigos no totalmostrando 19

2025

Discovery of oligodendrocyte enhancers that regulate Sox10 expression.

PLoS genetics
2024

Waardenburg-Shah syndrome: A case of neonatal palliative care.

Pediatric discovery
2025

Pathology Seen in Myenteric Plexus in Two Subjects With Waardenburg Syndrome.

Neurogastroenterology and motility
2025

Placode and neural crest origins of congenital deafness in mouse models of Waardenburg-Shah syndrome.

iScience
2024

Syndromic Association of Depigmentation With Congenital Hearing Loss: A Review of Three Children With Auditory Pigmentary Disorders.

Ear, nose, &amp; throat journal
2024

Clinical Insights Into Waardenburg-Shah Syndrome: A Case Series and Literature Review.

Cureus
2023

Clinical Significance of SOX10 Expression in Human Pathology.

Current issues in molecular biology
2022

Neurological Waardenburg-Shah syndrome: a diagnostic challenge in a child with skin hypopigmentation and neurological manifestation.

BMJ case reports
2022

Waardenburg-Shah syndrome rare and challenging case report from Somalia.

International journal of surgery case reports
2020

Waardenburg-Shah syndrome (WS type IV): a rare case from Pakistan.

Perioperative medicine (London, England)
2019

The SOXE transcription factors-SOX8, SOX9 and SOX10-share a bi-partite transactivation mechanism.

Nucleic acids research
2019

The additional genetic diagnosis of homozygous sickle cell disease in a patient with Waardenburg-Shah syndrome: a case report.

Journal of medical case reports
2018

Case of Waardenburg Shah syndrome in a family with review of literature.

Journal of otology
2018

A Case of Waardenburg-Shah Syndrome Type 4 Presenting with Bilateral Homochromatic Blue Irises from Pakistan.

Cureus
2018

A recalcitrant case of Jacquet erosive diaper dermatitis after surgery for Hirschsprung disease in a boy with Waardenburg-Shah syndrome.

Dermatology online journal
2017

22q11.2q13 duplication including SOX10 causes sex-reversal and peripheral demyelinating neuropathy, central dysmyelinating leukodystrophy, Waardenburg syndrome, and Hirschsprung disease.

American journal of medical genetics. Part A
2017

A de novo deletion mutation in SOX10 in a Chinese family with Waardenburg syndrome type 4.

Scientific reports
2016

Waardenburg-Shah Syndrome: a rare case in an Indian child.

BMJ case reports
2015

Waardenburg Shah syndrome: A rare case from India.

Oman journal of ophthalmology

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

Ainda não temos associações cadastradas para Síndrome Waardenburg-Shah.

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

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. Discovery of oligodendrocyte enhancers that regulate Sox10 expression.
    PLoS genetics· 2025· PMID 40644525mais citado
  2. Pathology Seen in Myenteric Plexus in Two Subjects With Waardenburg Syndrome.
    Neurogastroenterology and motility· 2025· PMID 40364458mais citado
  3. Erratum: Placode and neural crest origins of congenital deafness in mouse models of Waardenburg-Shah syndrome.
    iScience· 2025· PMID 40276772mais citado
  4. Placode and neural crest origins of congenital deafness in mouse models of Waardenburg-Shah syndrome.
    iScience· 2025· PMID 39868048mais citado
  5. Syndromic Association of Depigmentation With Congenital Hearing Loss: A Review of Three Children With Auditory Pigmentary Disorders.
    Ear, nose, &amp; throat journal· 2024· PMID 39641445mais citado
  6. Waardenburg-Shah Syndrome: Diagnostic and Surgical Challenges in a Resource-Limited Setting - A Rare Case Report.
    Int Med Case Rep J· 2026· PMID 41940241recente
  7. Waardenburg-Shah syndrome: A case of neonatal palliative care.
    Pediatr Discov· 2024· PMID 40626131recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:897(Orphanet)
  2. MONDO:0019518(MONDO)
  3. GARD:5524(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q56014317(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 Waardenburg-Shah
Compêndio · Raras BR

Síndrome Waardenburg-Shah

ORPHA:897 · MONDO:0019518
Prevalência
<1 / 1 000 000
Casos
100 casos conhecidos
Herança
Autosomal dominant, Autosomal recessive
CID-10
Q87.8 · Outras síndromes com malformações congênitas especificadas, não classificadas em outra parte
CID-11
OMIM
OMIM:277580
Início
Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C3266898
EuropePMC
Wikidata
Papers 10a
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