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Síndrome de microdeleção 17q11
ORPHA:97685CID-10 · Q85.0CID-11 · LD44.H0OMIM 613675DOENÇA RARA

Uma forma rara e grave de neurofibromatose tipo 1 (NF1), caracterizada por características faciais um pouco diferentes, atraso no desenvolvimento, deficiência intelectual, maior risco de câncer e um grande número de neurofibromas.

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Introdução

O que você precisa saber de cara

📋

Uma forma rara e grave de neurofibromatose tipo 1 (NF1), caracterizada por características faciais um pouco diferentes, atraso no desenvolvimento, deficiência intelectual, maior risco de câncer e um grande número de neurofibromas.

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
170
pacientes catalogados
Início
Antenatal
+ infancy, neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q85.0
🇧🇷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

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Sinais e sintomas

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

Partes do corpo afetadas

🧠
Neurológico
25 sintomas
🦴
Ossos e articulações
17 sintomas
😀
Face
10 sintomas
👁️
Olhos
9 sintomas
❤️
Coração
8 sintomas
📏
Crescimento
6 sintomas

+ 50 sintomas em outras categorias

Características mais comuns

97%prev.
Sardas axilares
Frequência: 28/29
93%prev.
Mancha café com leite
Frequência: 27/29
93%prev.
Comprometimento cognitivo
Frequência: 27/29
93%prev.
Nódulos de Lisch
Frequente (79-30%)
90%prev.
Múltiplas manchas café com leite
Muito frequente (99-80%)
90%prev.
Responsividade social reduzida
Muito frequente (99-80%)
137sintomas
Muito frequente (9)
Frequente (39)
Ocasional (54)
Muito raro (15)
Sem dados (20)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 137 características clínicas mais associadas, ordenadas por frequência.

Sardas axilaresAxillary freckling
Frequência: 28/2997%
Mancha café com leiteCafe-au-lait spot
Frequência: 27/2993%
Comprometimento cognitivoCognitive impairment
Frequência: 27/2993%
Nódulos de LischLisch nodules
Frequente (79-30%)93%
Múltiplas manchas café com leiteMultiple cafe-au-lait spots
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa2desde 2024
Últimos 10 anos18publicações
Pico20173 papers
Linha do tempo
2024Hoje · 2026📈 2017Ano 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

2 genes identificados com associação a esta condição. Padrão de herança: Not applicable.

NF1NeurofibrominRole in the phenotype ofAltamente restrito
FUNÇÃO

Stimulates the GTPase activity of Ras. NF1 shows greater affinity for Ras GAP, but lower specific activity. May be a regulator of Ras activity

LOCALIZAÇÃO

NucleusNucleus, nucleolusCell membrane

VIAS BIOLÓGICAS (1)
RAS signaling downstream of NF1 loss-of-function variants
MECANISMO DE DOENÇA

Neurofibromatosis 1

A disease characterized by patches of skin pigmentation (cafe-au-lait spots), Lisch nodules of the iris, tumors in the peripheral nervous system and fibromatous skin tumors. Individuals with the disorder have increased susceptibility to the development of benign and malignant tumors.

EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
17.9 TPM
Cérebro - Hemisfério cerebelar
17.1 TPM
Cerebelo
15.3 TPM
Nervo tibial
14.9 TPM
Tireoide
14.1 TPM
OUTRAS DOENÇAS (12)
neurofibromatosis, familial spinalneurofibromatosis type 1juvenile myelomonocytic leukemiaWatson syndrome
HGNC:7765UniProt:P21359
RNF135E3 ubiquitin-protein ligase RNF135Candidate gene tested inTolerante
FUNÇÃO

E2-dependent E3 ubiquitin-protein ligase that functions as a RIGI coreceptor in the sensing of viral RNAs in cell cytoplasm and the activation of the antiviral innate immune response (PubMed:19017631, PubMed:19484123, PubMed:21147464, PubMed:23950712, PubMed:28469175, PubMed:31006531). Together with the UBE2D3, UBE2N and UB2V1 E2 ligases, catalyzes the 'Lys-63'-linked polyubiquitination of RIGI oligomerized on viral RNAs, an essential step in the activation of the RIG-I signaling pathway (PubMed

LOCALIZAÇÃO

CytoplasmCytoplasm, Stress granule

VIAS BIOLÓGICAS (8)
DDX58/IFIH1-mediated induction of interferon-alpha/betaSARS-CoV-2 activates/modulates innate and adaptive immune responsesNegative regulators of DDX58/IFIH1 signalingTRAF3-dependent IRF activation pathwayOvarian tumor domain proteases
EXPRESSÃO TECIDUAL(Ubíquo)
Baço
28.9 TPM
Skin Sun Exposed Lower leg
27.5 TPM
Skin Not Sun Exposed Suprapubic
26.2 TPM
Tecido adiposo
23.9 TPM
Cervix Endocervix
22.4 TPM
OUTRAS DOENÇAS (1)
chromosome 17q11.2 deletion syndrome, 1.4Mb
HGNC:21158UniProt:Q8IUD6

Variantes genéticas (ClinVar)

7,251 variantes patogênicas registradas no ClinVar.

🧬 NF1: NM_001042492.3(NF1):c.1932del (p.Met645fs) ()
🧬 NF1: NM_001042492.3(NF1):c.388C>A (p.His130Asn) ()
🧬 NF1: NM_001042492.3(NF1):c.1541dup (p.Pro516fs) ()
🧬 NF1: NM_001042492.3(NF1):c.5533A>G (p.Ile1845Val) ()
🧬 NF1: NM_001042492.3(NF1):c.2895A>G (p.Ile965Met) ()
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 de microdeleção 17q11

🗺️

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.

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Ensaios clínicos abertos e novidades científicas recentes

Pesquisa e ensaios clínicos

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Publicações mais relevantes

Timeline de publicações
0 papers (10 anos)
#1

Genetic/epigenetic effects in NF1 microdeletion syndrome: beyond the haploinsufficiency, looking at the contribution of not deleted genes.

Human genetics2024 Jun

NF1 microdeletion syndrome, accounting for 5-11% of NF1 patients, is caused by a deletion in the NF1 region and it is generally characterized by a severe phenotype. Although 70% of NF1 microdeletion patients presents the same 1.4 Mb type-I deletion, some patients may show additional clinical features. Therefore, the contribution of several pathogenic mechanisms, besides haploinsufficiency of some genes within the deletion interval, is expected and needs to be defined. We investigated an altered expression of deletion flanking genes by qPCR in patients with type-1 NF1 deletion, compared to healthy donors, possibly contributing to the clinical traits of NF1 microdeletion syndrome. In addition, the 1.4-Mb deletion leads to changes in the 3D chromatin structure in the 17q11.2 region. Specifically, this deletion alters DNA-DNA interactions in the regions flanking the breakpoints, as demonstrated by our 4C-seq analysis. This alteration likely causes position effect on the expression of deletion flanking genes.Interestingly, 4C-seq analysis revealed that in microdeletion patients, an interaction was established between the RHOT1 promoter and the SLC6A4 gene, which showed increased expression. We performed NGS on putative modifier genes, and identified two "likely pathogenic" rare variants in RAS pathway, possibly contributing to incidental phenotypic features.This study provides new insights into understanding the pathogenesis of NF1 microdeletion syndrome and suggests a novel pathomechanism that contributes to the expression phenotype in addition to haploinsufficiency of genes located within the deletion.This is a pivotal approach that can be applied to unravel microdeletion syndromes, improving precision medicine, prognosis and patients' follow-up.

#2

Deregulated expression of polycomb repressive complex 2 target genes in a NF1 patient with microdeletion generating the RNF135-SUZ12 chimeric gene.

Neurogenetics2023 Jul

Neurofibromatosis type I (NF1) microdeletion syndrome, accounting for 5-11% of NF1 patients, is caused by the heterozygous deletion of NF1 and a variable number of flanking genes in the 17q11.2 region. This syndrome is characterized by more severe symptoms than those shown by patients with intragenic NF1 mutation and by variable expressivity, which is not fully explained by the haploinsufficiency of the genes included in the deletions. We here reevaluate an 8-year-old NF1 patient, who carries an atypical deletion generating the RNF135-SUZ12 chimeric gene, previously described when he was 3 years old. As the patient has developed multiple cutaneous/subcutaneous neurofibromas over the past 5 years, we hypothesized a role of RNF135-SUZ12 chimeric gene in the onset of the patient's tumor phenotype. Interestingly, SUZ12 is generally lost or disrupted in NF1 microdeletion syndrome and frequently associated to cancer as RNF135. Expression analysis confirmed the presence of the chimeric gene transcript and revealed hypo-expression of five out of the seven analyzed target genes of the polycomb repressive complex 2 (PRC2), to which SUZ12 belongs, in the patient's peripheral blood, indicating a higher transcriptional repression activity mediated by PRC2. Furthermore, decreased expression of tumor suppressor gene TP53, which is targeted by RNF135, was detected. These results suggest that RNF135-SUZ12 chimera may acquire a gain of function, compared with SUZ12 wild type in the PRC2 complex, and a loss of function relative to RNF135 wild type. Both events may have a role in the early onset of the patient's neurofibromas.

#3

Concomitance of 47,XXY, a balanced reciprocal translocation of t(4;17)(q12;q11.2) encompassing SPINK2 at 4q12 and NOS at 17q11.2 and an AZFa sY86 deletion in an infertile male.

Taiwanese journal of obstetrics &amp; gynecology2023 Mar

We present an infertile male who was incidentally detected to have Klinefelter syndrome, a balanced reciprocal translocation of t(4; 17) (q12; q11.2) and an AZFa sY86 deletion. We review the literature and discuss the significance of 47,XXY, t(4; 17) (q12; q11.2) and AZFa sY86 deletion in this case. A 37-year-old married infertile male was referred for genetic studies of azoospermia. His height was 195 cm and his weight was 85 kg. He had been married for more than one year without any pregnancy in his wife. He was referred for genetic counseling. Cytogenetic analysis revealed a karyotype of 47,XXY,t(4; 17) (q12; q11.2). In addition to Klinefelter syndrome, a balanced reciprocal translocation and an AZFa microdeletion were found. Sequence analysis of SPINK2 and NOS was also performed. These two fertile related genes were located at the breakpoints of translocation respectively. Heterozygosity of single-nucleotide polymorphisms (SNPs) evidenced the presence of two alleles as well as no deletions occurred at the breakpoint regions. An AZF gene analysis revealed a microdeletion at the region of AZFa sY86 region. Genetic analysis of an infertile male may detect multiple factors associated with azoospermia such as translocation, an AZF deletion and Klinefelter syndrome. This case emphasized the importance of tests for chromosomes and AZF deletions among patients with azoospermia. Complete genetic counseling of the consequence of a familial inheritance is also necessary to detect more family carrier members for the prevention of unbalanced chromosome in the offspring.

#4

[Neurofibromatosis-1 microdeletion syndrome.].

Orvosi hetilap2022 Dec 18

Neurofibromatosis type 1 is a clinically extremely heterogeneous neurocutaneous disorder, inherited in autosomal dominant manner. It is primarily caused by intragenic loss-of-function mutations in the NF1 gene, however, as a result of improvements in molecular diagnostics, copy number variants affecting the NF1 gene and its flanking regions are increasingly being detected. Based on genotype-phenotype analyses, two groups can be distinguished: neurofibromatosis type 1 caused by point mutations and the so-called 17q11.2 microdeletion syndrome caused by microdeletions. Microdeletions are observed in 5-10% of cases and can be divided into four different types (type 1, 2, 3 and atypical) according to the size of the deletion, the genomic location of the breakpoints and the affected gene content. Patients with microdeletions often have a more severe course of the disease, with an increased risk of malignancies. With this review, which summarizes the main characteristics and molecular genetic background of neurofibromatosis-1 microdeletion syndrome, we would like to emphasize the importance of early diagnosis of patients with microdeletion syndrome and draw attention to the importance of close follow-up. Orv Hetil. 2022; 163(51): 2041-2051. Az 1-es típusú neurofibromatosis autoszomális domináns öröklésmenetet mutató, klinikailag rendkívül heterogén neurocutan kórkép, amelynek kialakulásában elsődlegesen az NF1-gén intragenikus funkcióvesztéses mutációi játszanak szerepet. Ugyanakkor a molekuláris diagnosztika fejlődésének köszönhetően egyre több esetben sikerül kimutatni az NF1-gént és az azzal szomszédos régiókat érintő kópiaszámbeli variánsokat. Genotípus-fenotípus elemzések alapján a pontmutációs eltérések okozta 1-es típusú neurofibromatosis, illetve a microdeletiós eltérések okozta, ún. 17q11.2 microdeletiós szindróma elkülöníthetők egymástól. Microdeletiók az esetek 5–10%-ában figyelhetők meg, melyek méretük, töréspontjaik genomi lokalizációja és érintett géntartalmuk alapján négy különböző típusba (1-es, 2-es, 3-as és atípusos) sorolhatók. A microdeletiós betegek gyakran súlyosabb kórlefolyást mutatnak, melyből kiemelendő a malignitások emelkedett kockázata. Az összefoglaló közleménnyel, mely a neurofibromatosis-1 microdeletiós szindróma főbb jellemzőit, molekuláris genetikai hátterét és vizsgálati módszereit tárgyalja, a microdeletiós szindrómás betegek korai diagnózishoz jutásának fontosságát szeretnénk hangsúlyozni és felhívni a figyelmet a szoros nyomon követés jelentőségére. Orv Hetil. 2022; 163(51): 2041–2051.

#5

Co-existing bipolar disease and 17q12 deletion: a rare case report.

Psychiatric genetics2022 Feb 01

17q12 microdeletion syndrome is a rare autosomal dominant chromosomal anomaly, caused by the deletion of a 1.4 Mb-spanning DNA sequence on the long arm of chromosome 17. Herein, we report the first bipolar disease (BPD) case with a 1.6-Mb deletion in the 17q11.2-17q12 chromosome region. Physical examination of the case was performed. Karyotype and microarray analyses were performed for the case and the parents. Physical examination revealed mild dysmorphic features such as high and forehead, full cheeks, slightly depressed nasal bridge and arched eyebrow. Chromosomal analysis of the patient revealed 46, XX, del(17)(q12) karyotype, and parents' karyotype were normal. In the microarray analysis of patient, 1.6 megabases deletion was detected in the 17q12 region [arr(hg19) 17q12 (34,611,352-36,248,918) ×1]. The microarray analysis of the mother was normal. The father's microarray showed 473 kilobases duplication in the 11p11.12 region. Although 17q12 deletion syndrome has been associated with bipolar disorder, very few such cases have been described in the literature. Genetic counseling should be considered in patients with remarkable phenotype, complex symptomatology, neurodevelopmental disorder and additional conspicuous medical conditions.

Publicações recentes

Ver todas no PubMed

📚 EuropePMCmostrando 18

2024

Genetic/epigenetic effects in NF1 microdeletion syndrome: beyond the haploinsufficiency, looking at the contribution of not deleted genes.

Human genetics
2023

Deregulated expression of polycomb repressive complex 2 target genes in a NF1 patient with microdeletion generating the RNF135-SUZ12 chimeric gene.

Neurogenetics
2023

Concomitance of 47,XXY, a balanced reciprocal translocation of t(4;17)(q12;q11.2) encompassing SPINK2 at 4q12 and NOS at 17q11.2 and an AZFa sY86 deletion in an infertile male.

Taiwanese journal of obstetrics &amp; gynecology
2022

[Neurofibromatosis-1 microdeletion syndrome.].

Orvosi hetilap
2022

Co-existing bipolar disease and 17q12 deletion: a rare case report.

Psychiatric genetics
2021

Patient-derived iPSC-cerebral organoid modeling of the 17q11.2 microdeletion syndrome establishes CRLF3 as a critical regulator of neurogenesis.

Cell reports
2021

Genotype-Phenotype Associations in Patients With Type-1, Type-2, and Atypical NF1 Microdeletions.

Frontiers in genetics
2021

A novel MEIS2 mutation explains the complex phenotype in a boy with a typical NF1 microdeletion syndrome.

European journal of medical genetics
2020

[A genetic case study of neurofibromatosis type 1-microdeletion syndrome caused by atypical 17q11.2 microdeletion].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2019

NF1 microdeletion syndrome: case report of two new patients.

Italian journal of pediatrics
2018

Rare NF1 microdeletion syndrome in an Omani patient.

Clinical case reports
2018

An estimation of the prevalence of genomic disorders using chromosomal microarray data.

Journal of human genetics
2018

Interstitial microdeletion of 17q11.2 is associated with hypotonia, fatigue, intellectual disability, and a subtle facial phenotype in three unrelated patients.

American journal of medical genetics. Part A
2017

[Phenotypic and genetic analysis of a child carrying a 17q11.2 microdeletion].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics
2017

Identification of an atypical microdeletion generating the RNF135-SUZ12 chimeric gene and causing a position effect in an NF1 patient with overgrowth.

Human genetics
2017

Characterization of the Phenotype Associated with Microduplication Reciprocal to NF1 Microdeletion Syndrome.

Cytogenetic and genome research
2016

A novel de novo microdeletion at 17q11.2 adjacent to NF1 gene associated with developmental delay, short stature, microcephaly and dysmorphic features.

Molecular cytogenetics
2016

[Prenatal genetic diagnosis for a fetus with atypical neurofibromatosis type 1 microdeletion].

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

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

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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. Genetic/epigenetic effects in NF1 microdeletion syndrome: beyond the haploinsufficiency, looking at the contribution of not deleted genes.
    Human genetics· 2024· PMID 38874808mais citado
  2. Deregulated expression of polycomb repressive complex 2 target genes in a NF1 patient with microdeletion generating the RNF135-SUZ12 chimeric gene.
    Neurogenetics· 2023· PMID 37145209mais citado
  3. Concomitance of 47,XXY, a balanced reciprocal translocation of t(4;17)(q12;q11.2) encompassing SPINK2 at 4q12 and NOS at 17q11.2 and an AZFa sY86 deletion in an infertile male.
    Taiwanese journal of obstetrics &amp; gynecology· 2023· PMID 36965905mais citado
  4. [Neurofibromatosis-1 microdeletion syndrome.].
    Orvosi hetilap· 2022· PMID 36528827mais citado
  5. Co-existing bipolar disease and 17q12 deletion: a rare case report.
    Psychiatric genetics· 2022· PMID 34629388mais citado
  6. SPAG7 is a candidate gene for the periodic fever, aphthous stomatitis, pharyngitis and adenopathy (PFAPA) syndrome.
    Genes Immun· 2014· PMID 24452265recente
  7. Positive regulation of apoptosis by HCA66, a new Apaf-1 interacting protein, and its putative role in the physiopathology of NF1 microdeletion syndrome patients.
    Cell Death Differ· 2007· PMID 17380155recente
  8. NF1 microdeletion syndrome: refined FISH characterization of sporadic and familial deletions with locus-specific probes.
    Am J Hum Genet· 2000· PMID 10631140recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:97685(Orphanet)
  2. OMIM OMIM:613675(OMIM)
  3. MONDO:0013357(MONDO)
  4. GARD:5408(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q21154063(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 de microdeleção 17q11
Compêndio · Raras BR

Síndrome de microdeleção 17q11

ORPHA:97685 · MONDO:0013357
Prevalência
Unknown
Casos
170 casos conhecidos
Herança
Not applicable
CID-10
Q85.0 · Neurofibromatose (não-maligna)
CID-11
Início
Antenatal, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C5401456
Wikidata
DiscussaoAtiva

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