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Ictiose ligada ao X recessiva
ORPHA:461CID-10 · Q80.1CID-11 · EC20.01OMIM 308100PCDT · SUSDOENÇA RARA

É uma condição de pele de origem genética que faz parte do grupo chamado Doenças Mendelianas de Cornificação (MeDOC). Ela se caracteriza por um espessamento excessivo e generalizado da pele, além de descamação.

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Introdução

O que você precisa saber de cara

📋

É uma condição de pele de origem genética que faz parte do grupo chamado Doenças Mendelianas de Cornificação (MeDOC). Ela se caracteriza por um espessamento excessivo e generalizado da pele, além de descamação.

Publicações científicas
88 artigos
Último publicado: 2023

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
1-5 / 10 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
16.6
Europe
Início
Neonatal
🏥
SUS: Cobertura parcialScore: 45%
PCDT disponívelCID-10: Q80.1
🇧🇷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

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Sinais e sintomas

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

Partes do corpo afetadas

🧬
Pele e cabelo
5 sintomas
🧠
Neurológico
2 sintomas
👁️
Olhos
1 sintomas
👂
Ouvidos
1 sintomas

+ 12 sintomas em outras categorias

Características mais comuns

100%prev.
Ictiose
Muito frequente (99-80%)
90%prev.
Pele seca
Muito frequente (99-80%)
90%prev.
Hiperceratose
Muito frequente (99-80%)
55%prev.
Transtorno do déficit de atenção com hiperatividade
Frequente (79-30%)
43%prev.
HP:0003577
Frequência: 15/35
34%prev.
Hipo-hidrose
Muito frequente (99-80%)
21sintomas
Muito frequente (3)
Frequente (3)
Ocasional (11)
Muito raro (2)
Sem dados (2)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 21 características clínicas mais associadas, ordenadas por frequência.

IctioseIchthyosis
Muito frequente (99-80%)100%
Pele secaDry skin
Muito frequente (99-80%)90%
HiperceratoseHyperkeratosis
Muito frequente (99-80%)90%
Transtorno do déficit de atenção com hiperatividadeAttention deficit hyperactivity disorder
Frequente (79-30%)55%
HP:0003577
Frequência: 15/3543%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa3desde 2023
Total histórico88PubMed
Últimos 10 anos11publicações
Pico20233 papers
Linha do tempo
2023Hoje · 2026
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

2 genes identificados com associação a esta condição. Padrão de herança: X-linked recessive.

FLGFibroblast growth factor receptor 1Modifying germline mutation inTolerante
FUNÇÃO

Tyrosine-protein kinase that acts as a cell-surface receptor for fibroblast growth factors and plays an essential role in the regulation of embryonic development, cell proliferation, differentiation and migration. Required for normal mesoderm patterning and correct axial organization during embryonic development, normal skeletogenesis and normal development of the gonadotropin-releasing hormone (GnRH) neuronal system. Phosphorylates PLCG1, FRS2, GAB1 and SHB. Ligand binding leads to the activati

LOCALIZAÇÃO

Cell membraneNucleusCytoplasm, cytosolCytoplasmic vesicle

VIAS BIOLÓGICAS (1)
Formation of the cornified envelope
MECANISMO DE DOENÇA

Pfeiffer syndrome

A syndrome characterized by the association of craniosynostosis, broad and deviated thumbs and big toes, and partial syndactyly of the fingers and toes. Three subtypes are known: mild autosomal dominant form (type 1); cloverleaf skull, elbow ankylosis, early death, sporadic (type 2); craniosynostosis, early demise, sporadic (type 3).

EXPRESSÃO TECIDUAL(Tecido-específico)
Skin Sun Exposed Lower leg
431.7 TPM
Skin Not Sun Exposed Suprapubic
229.7 TPM
Esôfago - Mucosa
3.2 TPM
Vagina
1.1 TPM
Ovário
1.0 TPM
OUTRAS DOENÇAS (3)
autosomal dominant ichthyosis vulgarisrecessive X-linked ichthyosisdermatitis, atopic, 2
HGNC:3748UniProt:P11362
STSSteryl-sulfataseDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Catalyzes the conversion of sulfated steroid precursors, such as dehydroepiandrosterone sulfate (DHEA-S) and estrone sulfate to the free steroid

LOCALIZAÇÃO

Cytoplasmic vesicle, secretory vesicle, microneme membraneEndoplasmic reticulum membrane

VIAS BIOLÓGICAS (2)
The activation of arylsulfatasesGlycosphingolipid catabolism
MECANISMO DE DOENÇA

Ichthyosis, X-linked

A keratinization disorder manifesting with mild erythroderma and generalized exfoliation of the skin within a few weeks after birth. Affected boys later develop large, polygonal, dark brown scales, especially on the neck, extremities, trunk, and buttocks.

EXPRESSÃO TECIDUAL(Ubíquo)
Artéria tibial
26.2 TPM
Fibroblastos
18.9 TPM
Artéria coronária
17.0 TPM
Tecido adiposo
16.7 TPM
Linfócitos
16.3 TPM
OUTRAS DOENÇAS (2)
recessive X-linked ichthyosissyndromic recessive X-linked ichthyosis
HGNC:11425UniProt:P08842

Variantes genéticas (ClinVar)

643 variantes patogênicas registradas no ClinVar.

🧬 STS: GRCh38/hg38 Xp22.31(chrX:6537236-8167012)x0 ()
🧬 STS: GRCh38/hg38 Xp22.31(chrX:6537236-8167012)x0 ()
🧬 STS: GRCh38/hg38 Xp22.31(chrX:6851856-7987439)x0 ()
🧬 STS: GRCh38/hg38 Xp22.33-11.4(chrX:251888-42476276)x2 ()
🧬 STS: GRCh38/hg38 Xp22.31(chrX:6537109-8167604)x0 ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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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 — Ictiose ligada ao X recessiva

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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

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Publicações mais relevantes

Timeline de publicações
11 papers (10 anos)
#1

RNA sequencing and lipidomics uncovers novel pathomechanisms in recessive X-linked ichthyosis.

Frontiers in molecular biosciences2023

Recessive X-linked ichthyosis (RXLI), a genetic disorder caused by deletion or point mutations of the steroid sulfatase (STS) gene, is the second most common form of ichthyosis. It is a disorder of keratinocyte cholesterol sulfate retention and the mechanism of extracutaneous phenotypes such as corneal opacities and attention deficit hyperactivity disorder are poorly understood. To understand the pathomechanisms of RXLI, the transcriptome of differentiated primary keratinocytes with STS knockdown was sequenced. The results were validated in a stable knockdown model of STS, to confirm STS specificity, and in RXLI skin. The results show that there was significantly reduced expression of genes related to epidermal differentiation and lipid metabolism, including ceramide and sphingolipid synthesis. In addition, there was significant downregulation of aldehyde dehydrogenase family members and the oxytocin receptor which have been linked to corneal transparency and behavioural disorders respectively, both of which are extracutaneous phenotypes of RXLI. These data provide a greater understanding of the causative mechanisms of RXLI's cutaneous phenotype, and show that the keratinocyte transcriptome and lipidomics can give novel insights into the phenotype of patients with RXLI.

#2

Multiplex Proteomic Evaluation in Inborn Errors with Deregulated IgE Response.

Biomedicines2023 Jan 13

(1) Background: Atopic dermatitis constitutes one of the most common inflammatory skin manifestations of the pediatric population. The onset of many inborn errors occurs early in life with an AD-like picture associated with a deregulated IgE response. The availability of proteomic tests for the simultaneous evaluation of hundreds of molecules allows for more precise diagnosis in these cases. (2) Methods: Comparative genomic hybridization microarray (Array-CGH) analysis and specific IgE evaluation by using allergenic microarray (ISAC) and microarray (ALEX2) systems were performed. (3) Results: Proteomic investigations that use multiplex methods have proven to be extremely useful to diagnose the sensitization profile in inborn errors with deregulated IgE synthesis. Four patients with rare diseases, such as recessive X-linked ichthyosis (RXLI, OMIM 308100), Comel-Netherton syndrome (NS, OMIM256500), monosomy 1p36 syndrome (OMIM: 607872), and a microduplication of Xp11.4 associated with extremely high levels of IgE: 7.710 kU/L, 5.300 kU/L, 1.826 kU/L, and 10.430 kU/L, respectively, were evaluated by micro- and macroarray multiplex methods. Polyreactivity to both environmental and food allergens was observed in all cases, including the first described case of association of X-chromosome microduplication and HIE. (4) Conclusions: Extensive use of proteomic diagnostics should be included among the procedures to be implemented in inborn errors with hyper-IgE.

#3

Sulfotransferase 2B1b, Sterol Sulfonation, and Disease.

Pharmacological reviews2023 May

The primary function of human sulfotransferase 2B1b (SULT2B1b) is to sulfonate cholesterol and closely related sterols. SULT2B1b sterols perform a number of essential cellular functions. Many are signaling molecules whose activities are redefined by sulfonation-allosteric properties are switched "on" or "off," agonists are transformed into antagonists, and vice versa. Sterol sulfonation is tightly coupled to cholesterol homeostasis, and sulfonation imbalances are causally linked to cholesterol-related diseases including certain cancers, Alzheimer disease, and recessive X-linked ichthyosis-an orphan skin disease. Numerous studies link SULT2B1b activity to disease-relevant molecular processes. Here, these multifaceted processes are integrated into metabolic maps that highlight their interdependence and how their actions are regulated and coordinated by SULT2B1b oxysterol sulfonation. The maps help explain why SULT2B1b inhibition arrests the growth of certain cancers and make the novel prediction that SULT2B1b inhibition will suppress production of amyloid β (Aβ) plaques and tau fibrils while simultaneously stimulating Aβ plaque phagocytosis. SULT2B1b harbors a sterol-selective allosteric site whose structure is discussed as a template for creating inhibitors to regulate SULT2B1b and its associated biology. SIGNIFICANCE STATEMENT: Human sulfotransferase 2B1b (SULT2B1b) produces sterol-sulfate signaling molecules that maintain the homeostasis of otherwise pro-disease processes in cancer, Alzheimer disease, and X-linked ichthyosis-an orphan skin disease. The functions of sterol sulfates in each disease are considered and codified into metabolic maps that explain the interdependencies of the sterol-regulated networks and their coordinate regulation by SULT2B1b. The structure of the SULT2B1b sterol-sensing allosteric site is discussed as a means of controlling sterol sulfate biology.

#4

Clinical features and genetic analysis of two Chinese families with X-linked ichthyosis.

The Journal of international medical research2020 Oct

Recessive X-linked ichthyosis (RXLI) caused by deficiency of the steroid sulfatase gene (STS) has a reported prevalence of 1/2000 to 1/6000. The present study aimed to characterize the phenotypes and genotypes of two Chinese families with RXLI. The patients were referred to the Family Planning Research Institute of Hunan Province for genetic counseling. Their skin phenotypes were photographed, and venous blood was drawn and used for chromosomal microarray analysis (CMA). The skin phenotype of the proband from the first family was characterized by generalized skin dryness and scaling, with noticeable dark brown, polygonal scales on his trunk and extensor surfaces of his extremities. The proband from the second family had an atypical phenotype showing mild skin dryness over his entire body, slight scaling on his abdomen, and small skin fissures on his arms and legs. No mental disability or developmental anomaly was noted in either proband. CMA revealed that both probands carried a 1.4-Mb deletion on chromosome Xp22.31 involving four Online Mendelian Inheritance in Man-listed genes including STS. Our findings add knowledge to the genotype and phenotype spectrum of RXLI, which may be helpful in genetic counseling and prenatal diagnosis.

#5

Long and very long lamellar phases in model stratum corneum lipid membranes.

Journal of lipid research2019 May

Membrane models of the stratum corneum (SC) lipid barrier, either healthy or affected by recessive X-linked ichthyosis, constructed from ceramide [Cer; nonhydroxyacyl sphingosine N-tetracosanoyl-d-erythro-sphingosine (CerNS24) alone or with omega-O-acylceramide N-(32-linoleyloxy)dotriacontanoyl-d-erythro-sphingosine (CerEOS)], FFAs(C16-24), cholesterol (Chol), and sodium cholesteryl sulfate (CholS) were investigated. X-ray diffraction (XRD) revealed a previously unreported polymorphism of the membranes. In the absence of CerEOS, the membranes formed a short lamellar phase (SLP; the repeat distance d = 5.3 nm), a medium lamellar phase (MLP; d = 10.6 nm), or very long lamellar phases (VLLP; d = 15.9 and 21.2 nm). An increased CholS-to-Chol ratio modulated the membrane polymorphism, although the CholS phase separated at ≥ 7 weight% (of total lipids). The presence of CerEOS led to the stable long lamellar phase (LLP) with d = 12.2 nm and prevented VLLP formation. Our XRD results agree well with recently published cryo-electron microscopy data for vitreous skin sections, while also revealing new structures. Thus, lamellar phases with long repeat distances (MLP and VLLP) may be formed in the absence of omega-O-acylceramide, whereas these ultralong Cer species likely stabilize the final SC lipid architecture of LLP by riveting the adjacent lipid layers.

Publicações recentes

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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. RNA sequencing and lipidomics uncovers novel pathomechanisms in recessive X-linked ichthyosis.
    Frontiers in molecular biosciences· 2023· PMID 37363400mais citado
  2. Multiplex Proteomic Evaluation in Inborn Errors with Deregulated IgE Response.
    Biomedicines· 2023· PMID 36672710mais citado
  3. Sulfotransferase 2B1b, Sterol Sulfonation, and Disease.
    Pharmacological reviews· 2023· PMID 36549865mais citado
  4. Clinical features and genetic analysis of two Chinese families with X-linked ichthyosis.
    The Journal of international medical research· 2020· PMID 33026262mais citado
  5. Long and very long lamellar phases in model stratum corneum lipid membranes.
    Journal of lipid research· 2019· PMID 30885924mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:461(Orphanet)
  2. OMIM OMIM:308100(OMIM)
  3. MONDO:0010622(MONDO)
  4. Ictiose Hereditaria(PCDT · Ministério da Saúde)
  5. GARD:7904(GARD (NIH))
  6. Variantes catalogadas(ClinVar)
  7. Busca completa no PubMed(PubMed)
  8. Q3804555(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

Ictiose ligada ao X recessiva
Compêndio · Raras BR

Ictiose ligada ao X recessiva

ORPHA:461 · MONDO:0010622
🇧🇷 Brasil SUS
Geral
Prevalência
1-5 / 10 000
Herança
X-linked recessive
CID-10
Q80.1 · Ictiose ligada ao cromossomo X
CID-11
Início
Neonatal
Prevalência
16.6 (Europe)
MedGen
UMLS
C0079588
EuropePMC
Wikidata
Papers 10a
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