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Síndrome Marden-Walker
ORPHA:2461CID-10 · Q87.0CID-11 · LD26.41OMIM 248700DOENÇA RARA

A síndrome de Marden-Walker (SMW) é uma síndrome de malformação caracterizada por múltiplas articulações com movimentos restritos e enrijecidos (artrogripose), um rosto com aparência de máscara, abertura dos olhos pequena, mandíbula pequena, céu da boca muito arqueado ou com fenda, orelhas posicionadas mais para baixo, pouca massa muscular, curvatura da coluna (cifoscoliose) e dedos das mãos e dos pés longos e finos.

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Introdução

O que você precisa saber de cara

📋

A síndrome de Marden-Walker (SMW) é uma síndrome de malformação caracterizada por múltiplas articulações com movimentos restritos e enrijecidos (artrogripose), um rosto com aparência de máscara, abertura dos olhos pequena, mandíbula pequena, céu da boca muito arqueado ou com fenda, orelhas posicionadas mais para baixo, pouca massa muscular, curvatura da coluna (cifoscoliose) e dedos das mãos e dos pés longos e finos.

Publicações científicas
61 artigos
Último publicado: 2026 Feb 21

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
50
pacientes catalogados
Início
Antenatal
+ infancy, 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
12 sintomas
🦴
Ossos e articulações
12 sintomas
🧠
Neurológico
10 sintomas
🫘
Rins
8 sintomas
💪
Músculos
6 sintomas
📏
Crescimento
5 sintomas

+ 29 sintomas em outras categorias

Características mais comuns

100%prev.
HP:0003577
Obrigatório (100%)
100%prev.
Malformação de Dandy-Walker
Obrigatório (100%)
100%prev.
Fissura palatina
Obrigatório (100%)
100%prev.
Deficiência intelectual
Obrigatório (100%)
100%prev.
Escoliose
Obrigatório (100%)
100%prev.
Micrognatia
Obrigatório (100%)
93sintomas
Muito frequente (31)
Frequente (6)
Ocasional (26)
Sem dados (30)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 93 características clínicas mais associadas, ordenadas por frequência.

HP:0003577
Obrigatório (100%)100%
Malformação de Dandy-WalkerDandy-Walker malformation
Obrigatório (100%)100%
Fissura palatinaCleft palate
Obrigatório (100%)100%
Deficiência intelectualIntellectual disability
Obrigatório (100%)100%
EscolioseScoliosis
Obrigatório (100%)100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico61PubMed
Últimos 10 anos14publicações
Pico20162 papers
Linha do tempo
2026Hoje · 2026
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.

PIEZO2Piezo-type mechanosensitive ion channel component 2Disease-causing germline mutation(s) inRestrito
FUNÇÃO

Pore-forming subunit of the mechanosensitive non-specific cation Piezo channel required for rapidly adapting mechanically activated (MA) currents and has a key role in sensing touch and tactile pain (PubMed:37590348). Piezo channels are homotrimeric three-blade propeller-shaped structures that utilize a cap-motion and plug-and-latch mechanism to gate their ion-conducting pathways (PubMed:37590348). Expressed in sensory neurons, is essential for diverse physiological processes, including respirat

LOCALIZAÇÃO

Cell membrane

VIAS BIOLÓGICAS (1)
Turbulent (oscillatory, disturbed) flow shear stress activates signaling by PIEZO1 and integrins in endothelial cells
MECANISMO DE DOENÇA

Arthrogryposis, distal, 5

A form of distal arthrogryposis, a disease characterized by congenital joint contractures that mainly involve two or more distal parts of the limbs, in the absence of a primary neurological or muscle disease. DA5 features include ocular abnormalities, typically ptosis, ophthalmoplegia and/or strabismus, in addition to contractures of the skeletal muscles. Some patients have pulmonary hypertension as a result of restrictive lung disease.

EXPRESSÃO TECIDUAL(Tecido-específico)
Pulmão
8.0 TPM
Brain Spinal cord cervical c-1
7.6 TPM
Nervo tibial
5.2 TPM
Cólon sigmoide
5.0 TPM
Próstata
3.4 TPM
OUTRAS DOENÇAS (4)
Gordon syndromearthrogryposis- oculomotor limitation-electroretinal anomalies syndromearthrogryposis, distal, with impaired proprioception and touchMarden-Walker syndrome
HGNC:26270UniProt:Q9H5I5

Variantes genéticas (ClinVar)

405 variantes patogênicas registradas no ClinVar.

🧬 PIEZO2: GRCh38/hg38 18p11.32-11.21(chr18:136227-15181209)x4 ()
🧬 PIEZO2: NM_001378183.1(PIEZO2):c.1609A>G (p.Arg537Gly) ()
🧬 PIEZO2: NM_001378183.1(PIEZO2):c.7891A>G (p.Ile2631Val) ()
🧬 PIEZO2: NM_001378183.1(PIEZO2):c.2695_2696del (p.Ala899fs) ()
🧬 PIEZO2: NM_001378183.1(PIEZO2):c.1498A>C (p.Ser500Arg) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 63 variantes classificadas pelo ClinVar.

16
44
3
Patogênica (25.4%)
VUS (69.8%)
Benigna (4.8%)
VARIANTES MAIS SIGNIFICATIVAS
PIEZO2: NM_001378183.1(PIEZO2):c.4588C>T (p.Pro1530Ser) [Conflicting classifications of pathogenicity]
PIEZO2: NM_001378183.1(PIEZO2):c.1379-1G>A [Likely pathogenic]
PIEZO2: NM_001378183.1(PIEZO2):c.7880dup (p.Gln2628fs) [Likely pathogenic]
PIEZO2: NM_001378183.1(PIEZO2):c.3529G>A (p.Ala1177Thr) [Conflicting classifications of pathogenicity]
PIEZO2: NM_001378183.1(PIEZO2):c.172C>T (p.Arg58Trp) [Conflicting classifications of pathogenicity]

Vias biológicas (Reactome)

1 via biológica associada 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 Marden-Walker

🗺️

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
14 papers (10 anos)
#1

Distal arthrogryposis with impaired proprioception and touch: description of 9 additional cases harbouring novel PIEZO2 variants and literature review.

European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society2026 Feb 21

Mechanosensation is the ability to detect dynamic mechanical stimuli and is essential for many processes, including sense of touch on the skin. PIEZO2 is a functional ion channel assembled by three monomers and is an essential mechanotransducer for touch, proprioception, and interoception. Heterozygous pathogenic variants in PIEZO2 gene are associated with distal arthrogryposis type 3 (MIM:114300) and type 5 (MIM:108145), and with Marden-Walker Syndrome (MIM:248700). Recessive pathogenic variants in PIEZO2 are associated with distal arthrogryposis with impaired proprioception and touch (DAIPT) (MIM:617146). Papers describing patient cohorts in literature are few. Here we described 9 patients from 8 families with a very similar clinical picture characterized by neonatal respiratory distress, hypotonia, delayed motor development, sensory ataxia, foot deformities, hyperlaxity, progressive scoliosis, and skeletal contractures. We also carried out a review of patients reported in literature with recessive PIEZO2 variants. We retrospectively analyzed clinical and genetic results of 5 patients followed at Bambino Gesù Children Hospital and 4 patients followed at Neuropediatric Unit, Clinica Meds, Santiago, Chile. In our cohort, we identified nine patients harbouring PIEZO2 variants. Among them, eight patients carried single nucleotide variants (SNVs): three were compound heterozygous, two were homozygous, and two harboured two heterozygous variants of unknown allelic phase. Additionally, one other patient, who presented with a highly suggestive clinical phenotype, was found to harbour only a single heterozygous maternally inherited, frameshift variant. Only one patient was found to have a large homozygous copy number variant (CNV). Our cohort clinical phenotype, even though of variable severity, is highly concordant between the patients and literature data. To our knowledge this is one of the largest cohort of patients with recessive PIEZO2 variants so far.

#2

Expanding the Genotype-Phenotype Correlation of Marden-Walker Syndrome due to PIEZO2 Gene Variants: A Case Report From Brazil.

American journal of medical genetics. Part A2026 Jan 22

Marden-Walker syndrome (MWS; OMIM 248700) is an extremely rare congenital disorder characterized by multiple joint contractures, craniofacial dysmorphism, neurological abnormalities, and multisystem involvement. Although historically diagnosed on clinical grounds, only a few cases have been molecularly confirmed. Here, we describe a Brazilian female infant with classic manifestations of MWS, carrying a heterozygous pathogenic variant in the PIEZO2 gene not previously reported in MWS. To our knowledge, this is the first molecularly confirmed MWS case from Brazil, thus expanding both the genotype-phenotype spectrum and geographic distribution of PIEZO2-related disorders. Comparative analysis of previously reported molecularly confirmed cases reveals shared core features and highlights the prominent neurological involvement observed in our patient. A review of individuals with the same PIEZO2 variant demonstrates marked phenotypic variability-from Gordon syndrome to distal arthrogryposis type 5-underscoring allelic heterogeneity and variable expressivity. This case refines the phenotypic spectrum of PIEZO2-related disorders and illustrates how allelic heterogeneity contributes to wide clinical variability, while also underscoring the importance of including underrepresented populations in variant interpretation.

#3

Genetic Etiology of Developmental and Epileptic Encephalopathy in a Turkish Cohort: A Single-Center Study with Targeted Gene Panel and Whole Exome Sequencing.

Genes2025 Sep 28

Developmental and Epileptic Encephalopathy (DEE) is a severe and heterogeneous neurological disorder in infancy/early childhood. DEE's genetic and phenotypic variability complicates diagnosis and treatment. This retrospective study aimed to identify genetic variants and explore genotype-phenotype correlations in children with DEE using a targeted epilepsy gene panel (TGP) and Whole Exome Sequencing (WES). Medical records of children who underwent custom-designed 55-gene TGP and WES were reviewed. The diagnostic yield of each method was determined based on the detection of pathogenic (P) and likely pathogenic (LP) variants. A total of 129 patients (66 males, 63 females) underwent TGP, which identified P/LP variants in 29 cases (22.48%). Variants were detected in SCN1A, KCNQ2, STXBP1, CDKL5, PCDH19, PLCB1, WWOX, SCN2A, FGF12, HCN1, SCN8A, and SLC35A2. WES further identified several variants in children with West syndrome. A TSC1 variant was detected in a patient without cutaneous stigmata of tuberous sclerosis complex. The NALCN variant in a patient was linked to Infantile Hypotonia with Psychomotor Retardation and Characteristic Facies 1. A CTBP1 variant associated with extremely rare Hypotonia, Ataxia, Developmental Delay, and Tooth Enamel Defect Syndrome was detected in another patient. A PIEZO2 variant-associated with Marden-Walker syndrome-was found in a child with Early Infantile Developmental and Epileptic Encephalopathy. These findings highlight the extensive genetic heterogeneity and phenotypic variability of DEE. WES demonstrates substantial value in identifying novel gene-disease associations and may be considered as a first-tier diagnostic tool in epilepsy and DEE.

#4

A 24-year-Old Male with Marden-Walker Syndrome and Epilepsy: Case Report.

Neurology India2023

We report a 24-year-old male with blepharophimosis, psychomotor retardation, brachycephaly, microstomia, immobile face, high arched palate, single palmar crease, kyphoscoliosis, talipes equinovarus, inguinal hernia, pyloric stenosis, recurrent infections, bilateral camptodactyly, wide-set eyes, decreased muscle mass, hypotonia, exotropia, and ptosis in the left eye, growth retardation, multiple congenital contractures, and hyporreflexia. Contractures improved with aging, but intellectual disability and blepharophimosis remained. He also presented epilepsy, outbursts of laughter, and predisposition to drug adverse effects (skin lesions with carbamazepine and secondary parkinsonism).

#5

Lethal respiratory course and additional features expand the phenotypic spectrum of PIEZO2-related distal arthrogryposis type 5.

American journal of medical genetics. Part A2023 Feb

Distal arthrogryposes (DA) are a group of conditions presenting with multiple congenital contractures in the distal joints. The 10 types of DA are distinguished by different extra-articular manifestations. Heterozygous gain-of-function variants in PIEZO2 are known to cause a spectrum of DA conditions including DA type 3, DA type 5, and possibly Marden Walker syndrome, which are usually distinguished by the presence of cleft palate (DA3), ptosis and restriction in eye movements (DA5), and specific facial abnormalities and central nervous system involvement, respectively. We report on a boy with a recurrent de novo heterozygous PIEZO2 variant in exon 20 (NM_022068.3: c.2994G > A, p.(Met998Ile); NM_001378183.1: c.3069G > A, p.(Met1023Ile)), who presented at birth with DA and later developed respiratory insufficiency. His phenotype broadly fits the PIEZO2 phenotypic spectrum and potentially extends it with novel phenotypic features of pretibial linear vertical crease, immobile skin, immobile tongue, and lipid myopathy.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC43 artigos no totalmostrando 14

2026

Distal arthrogryposis with impaired proprioception and touch: description of 9 additional cases harbouring novel PIEZO2 variants and literature review.

European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
2026

Expanding the Genotype-Phenotype Correlation of Marden-Walker Syndrome due to PIEZO2 Gene Variants: A Case Report From Brazil.

American journal of medical genetics. Part A
2025

Genetic Etiology of Developmental and Epileptic Encephalopathy in a Turkish Cohort: A Single-Center Study with Targeted Gene Panel and Whole Exome Sequencing.

Genes
2023

A 24-year-Old Male with Marden-Walker Syndrome and Epilepsy: Case Report.

Neurology India
2022

Further Evidence of a Continuum in the Clinical Spectrum of Dominant PIEZO2-Related Disorders and Implications in Cerebellar Anomalies.

Molecular syndromology
2023

Lethal respiratory course and additional features expand the phenotypic spectrum of PIEZO2-related distal arthrogryposis type 5.

American journal of medical genetics. Part A
2021

Confirming the involvement of PIEZO2 in the etiology of Marden-Walker syndrome.

American journal of medical genetics. Part A
2020

First transcatheter leadless pacemaker implantation in a pediatric patient with a genetic disease.

Herzschrittmachertherapie &amp; Elektrophysiologie
2019

Mutations in PIEZO2 contribute to Gordon syndrome, Marden-Walker syndrome and distal arthrogryposis: A bioinformatics analysis of mechanisms.

Experimental and therapeutic medicine
2019

Distal arthrogryposis type 5 and PIEZO2 novel variant in a Canadian family.

American journal of medical genetics. Part A
2017

Recessive PIEZO2 stop mutation causes distal arthrogryposis with distal muscle weakness, scoliosis and proprioception defects.

Journal of human genetics
2016

Biallelic Loss of Proprioception-Related PIEZO2 Causes Muscular Atrophy with Perinatal Respiratory Distress, Arthrogryposis, and Scoliosis.

American journal of human genetics
2017

Familial Gordon syndrome associated with a PIEZO2 mutation.

American journal of medical genetics. Part A
2016

Diagnosis of Van den Ende-Gupta syndrome: Approach to the Marden-Walker-like spectrum of disorders.

American journal of medical genetics. Part A
Ver todos os 43 no EuropePMC

Associações

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Comunidades

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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. Distal arthrogryposis with impaired proprioception and touch: description of 9 additional cases harbouring novel PIEZO2 variants and literature review.
    European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society· 2026· PMID 41780226mais citado
  2. Expanding the Genotype-Phenotype Correlation of Marden-Walker Syndrome due to PIEZO2 Gene Variants: A Case Report From Brazil.
    American journal of medical genetics. Part A· 2026· PMID 41572728mais citado
  3. Genetic Etiology of Developmental and Epileptic Encephalopathy in a Turkish Cohort: A Single-Center Study with Targeted Gene Panel and Whole Exome Sequencing.
    Genes· 2025· PMID 41153369mais citado
  4. A 24-year-Old Male with Marden-Walker Syndrome and Epilepsy: Case Report.
    Neurology India· 2023· PMID 37635513mais citado
  5. Lethal respiratory course and additional features expand the phenotypic spectrum of PIEZO2-related distal arthrogryposis type 5.
    American journal of medical genetics. Part A· 2023· PMID 36317804mais citado
  6. Further Evidence of a Continuum in the Clinical Spectrum of Dominant PIEZO2-Related Disorders and Implications in Cerebellar Anomalies.
    Mol Syndromol· 2022· PMID 36588752recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:2461(Orphanet)
  2. OMIM OMIM:248700(OMIM)
  3. MONDO:0009564(MONDO)
  4. GARD:6973(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q6758640(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 Marden-Walker
Compêndio · Raras BR

Síndrome Marden-Walker

ORPHA:2461 · MONDO:0009564
Prevalência
<1 / 1 000 000
Casos
50 casos conhecidos
Herança
Autosomal recessive
CID-10
Q87.0 · Síndromes com malformações congênitas afetando predominantemente o aspecto da face
CID-11
Início
Antenatal, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0796033
EuropePMC
Wikidata
Papers 10a
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