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Síndrome mão-pé-genital
ORPHA:2438CID-10 · Q51.2CID-11 · LD2F.1YOMIM 140000DOENÇA RARA

A Síndrome Mão-Pé-Genital (HFGS) é uma síndrome muito rara que se manifesta com múltiplas malformações presentes desde o nascimento. Ela é caracterizada por malformações nas extremidades dos braços e pernas, e também nos órgãos urinários e genitais.

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Introdução

O que você precisa saber de cara

📋

A Síndrome Mão-Pé-Genital (HFGS) é uma síndrome muito rara que se manifesta com múltiplas malformações presentes desde o nascimento. Ela é caracterizada por malformações nas extremidades dos braços e pernas, e também nos órgãos urinários e genitais.

Publicações científicas
50 artigos
Último publicado: 2023 Mar

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
33
pacientes catalogados
Início
Antenatal
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q51.2
🇧🇷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

🦴
Ossos e articulações
14 sintomas
🫘
Rins
2 sintomas
🧬
Pele e cabelo
2 sintomas
👁️
Olhos
1 sintomas
❤️
Coração
1 sintomas

+ 22 sintomas em outras categorias

Características mais comuns

100%prev.
Quinto dedo curto
Frequência: 20/20
90%prev.
Primeiro metatarso curto
Muito frequente (99-80%)
90%prev.
Hálux curto
Muito frequente (99-80%)
90%prev.
Polegar curto
Muito frequente (99-80%)
90%prev.
Primeiro metacarpo curto
Muito frequente (99-80%)
90%prev.
Útero bicorno
Muito frequente (99-80%)
42sintomas
Muito frequente (12)
Frequente (8)
Ocasional (6)
Sem dados (16)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 42 características clínicas mais associadas, ordenadas por frequência.

Quinto dedo curtoShort 5th finger
Frequência: 20/20100%
Primeiro metatarso curtoShort first metatarsal
Muito frequente (99-80%)90%
Hálux curtoShort hallux
Muito frequente (99-80%)90%
Polegar curtoShort thumb
Muito frequente (99-80%)90%
Primeiro metacarpo curtoShort 1st metacarpal
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa3desde 2023
Total histórico50PubMed
Últimos 10 anos13publicações
Pico20163 papers
Linha do tempo
2023Hoje · 2026🧪 2004Primeiro ensaio clínico📈 2016Ano de pico
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

1 gene identificado com associação a esta condição. Padrão de herança: Autosomal dominant.

HOXA13Homeobox protein Hox-A13Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Sequence-specific, AT-rich binding transcription factor which is part of a developmental regulatory system that provides cells with specific positional identities on the anterior-posterior axis Sequence-specific transcription factor which is part of a developmental regulatory system that provides cells with specific positional identities on the anterior-posterior axis

LOCALIZAÇÃO

Nucleus

MECANISMO DE DOENÇA

Hand-foot-genital syndrome

A disorder characterized by limb and genitourinary anomalies. Clinical features include small feet with unusually short great toes and abnormal thumbs. Females with the disorder have duplication of the genital tract.

EXPRESSÃO TECIDUAL(Tecido-específico)
Cervix Ectocervix
71.9 TPM
Cervix Endocervix
59.2 TPM
Vagina
30.5 TPM
Bladder
30.0 TPM
Próstata
26.0 TPM
INTERAÇÕES PROTEICAS (2)
OUTRAS DOENÇAS (2)
hand-foot-genital syndromeGuttmacher syndrome
HGNC:5102UniProt:P31271

Variantes genéticas (ClinVar)

59 variantes patogênicas registradas no ClinVar.

🧬 HOXA13: GRCh37/hg19 7p22.3-14.3(chr7:158725-29918785)x3 ()
🧬 HOXA13: GRCh37/hg19 7p21.2-15.2(chr7:16417575-27541028)x3 ()
🧬 HOXA13: NM_000522.5(HOXA13):c.423_424delinsA (p.Ala142fs) ()
🧬 HOXA13: NM_000522.5(HOXA13):c.837G>A (p.Trp279Ter) ()
🧬 HOXA13: NM_000522.5(HOXA13):c.730C>T (p.Gln244Ter) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 66 variantes classificadas pelo ClinVar.

7
59
Patogênica (10.6%)
VUS (89.4%)
VARIANTES MAIS SIGNIFICATIVAS
HOXA13: NM_000522.5(HOXA13):c.348_377del (p.Ala124_Ala133del) [Conflicting classifications of pathogenicity]
HOXA13: NM_000522.5(HOXA13):c.423_424delinsA (p.Ala142fs) [Likely pathogenic]
HOXA13: NM_000522.5(HOXA13):c.68G>C (p.Gly23Ala) [Uncertain significance]
HOXA13: NM_000522.5(HOXA13):c.88G>C (p.Glu30Gln) [Uncertain significance]
HOXA13: NM_000522.5(HOXA13):c.117_128dup (p.Ala51_Gly52insAlaAlaAlaAla) [Uncertain significance]

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

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
3Fase 31
2Fase 21
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 2 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)

🇧🇷 Atendimento SUS — Síndrome mão-pé-genital

🗺️

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

0 ensaios clínicos encontrados.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

Timeline de publicações
14 papers (10 anos)
#1

Genetic and phenotypic continuum of HOXA genes: A case with double HOXA9/HOXA13 mutations.

Molecular medicine reports2023 Mar

The HOXA genes cluster plays a key role in embryologic development. Mutations in HOXA genes have been linked to different human phenotypes, including developmental delay, limb anomalies, and urogenital malformations. The present study reported a clinical and genetic investigation of a female patient with polymalformative syndrome including left arm agenesis, bicornuate uterus and bicuspid aortic valve. Using whole exome sequencing, two heterozygous missense variants were identified. Of these, one was a novel variant in the HOXA13 gene [p.(Tyr290Ser)] and the second a heterozygous variant in the HOXA9 gene [p.(Ala102Pro)]. To the best of our knowledge, this is the first association of HOXA9/HOXA13 point mutations linked to a syndromic case. In conclusion, the present study suggested that the phenotypic spectrum of vertebral anomalies, anal atresia, cardiac defects, tracheo‑esophageal fistula, renal anomalies and limb abnormalities/hand‑foot‑genital syndrome may be attributable to the combination of different HOXA variants, particularly in patients with a severe clinical presentation. The current report contributed as well to the molecular understanding of HOXA genes‑related phenotypes via the identification of novel variant and genes associations.

#2

Hand-foot-genital syndrome due to a duplication variant in the GC-rich region of HOXA13.

European journal of medical genetics2023 Mar

Hand-Foot-Genital Syndrome (HFGS) is an autosomal dominant disorder characterized by a broad phenotypic spectrum. Variants in HOXA13 gene were associated with HFGS. To date, only twenty families with HFGS have been reported. However, the challenge in HFGS is the limited sample sizes and phenotypic heterogeneity. The advent of next-generation sequencing has permitted the identification of patients with HOXA13 variants who do not manifest with the full HFGS syndromic features. Trio (parents-proband) Whole-exome sequence(WES) and whole-genome sequencing(WGS) was carried out in this study to investigate the underlying pathogenic genetic factor of the neonate with a wide variety of clinical abnormalities. No possible pathogenetic variation was detected by trio-WES, and a duplication variant in HOXA13 (c.360_377dup, p.Ala128_Ala133dup), inherited from her mother, was identified by the subsequent WGS in the proband with malnutrition, feeding difficulties, electrolyte disorders, metabolic acidosis, recurrent urinary tract infections, hydronephrosis, nephrolithiasis, abnormal ureter morphology, cholelithiasis, uterus didelphys. Sequence analysis of the variant region (exon1) indicated a high GC content of 73.92%. In addition, further enquiry of the family history revealed that 5 members of the family in 4 generations had hand and foot anomalies. The neonate was diagnosed with HFGS by genetic analysis. GC content had less influence on sequence coverage in WGS than WES analysis. This was the first report of trio-WGS study for HFGS genetic diagnosis, revealed that subsequent WGS was necessary for identification of potentially pathogenic variants in unexplained genetic disorders.

#3

An unusual manifestation of Hand-Foot-Genital Syndrome: Embryonal Rhabdomyosarcoma - A case report.

Annals of medicine and surgery (2012)2021 Feb

Hand-Foot-Genital Syndrome (HFGS) is a dominantly inherited condition and one of the rarest cases encountered in clinical practice. It might be presented with a wide variety of limb malformations and urogenital defects manifestations. In this report, a unique and novel case of HFGS accompanied with Embryonal Rhabdomyosarcoma of the urinary bladder is described in a two-year-old male. The patient was admitted to the hospital in order to investigate a progressively enlarging mass in the lower abdomen. During hospitalization, oliguria was noted by resident physicians. However, hypospadias and dysmorphic abnormalities, demonstrated upon physical examination, were the cornerstone in the diagnosis of HFGS. An accurate visual examination of the abdomen showed dilated superficial veins, and abdominal rigidity appeared through palpation. Furthermore, the radiologic evaluation showed delayed ossification of carpal bones, and abdominal CT scan revealed a necrotic mass in the hypogastric region measuring 12 × 10 cm. A biopsy was performed through which the mass was confirmed as Embryonal Rhabdomyosarcoma of the urinary bladder. The kidney function follow-up showed normal results. Neoadjuvant chemotherapy was started to diminish the tumor size. However, the patient eventually passed away during the treatment phase. This report emphasizes the need for a high index of suspicion to establish early detection of Embryonal Rhabdomyosarcoma in each newborn diagnosed with Hand-Foot-Genital Syndrome (HFGS) to avoid potential fatal consequences.

#4

"Hand foot genital syndrome": Proposition of a new term, induced by Sunitinib in a patient of metastatic renal cell carcinoma.

Dermatologic therapy2021 Mar
#5

50 Years Ago in The Journal of Pediatrics: Hand-Foot-Genital Syndrome and Its Multiple Genetic Mechanisms.

The Journal of pediatrics2020 Jul

Hand-foot-genital syndrome (HFGS) is characterized by limb malformations and urogenital defects. Mild-to-severe bilateral shortening of the thumbs and great toes, caused primarily by shortening of the distal phalanx and/or the first metacarpal or metatarsal, is the most common limb malformation and results in impaired dexterity or apposition of the thumbs. Urogenital malformations include abnormalities of the ureters and urethra and various degrees of incomplete müllerian fusion in females, and hypospadias of variable severity with or without chordee in males. Vesicoureteral reflux, recurrent urinary tract infections, and chronic pyelonephritis may occur; fertility is normal. Diagnosis is based on physical examination including radiographs of the hands and feet and imaging studies of the kidneys, bladder, and female reproductive tract. Identification of a heterozygous HOXA13 pathogenic variant can establish the diagnosis if clinical and radiographic features are inconclusive. Approximately 50%-60% of pathogenic variants are polyalanine expansions. Treatment of manifestations: Hand or foot surgery is not usually necessary. Ureteric reimplantation and surgical correction of bladder outlet abnormalities are often necessary. Surgical removal of a longitudinal vaginal septum is rarely indicated. Surgery for removal of a uterine septum or reunification of a bicornuate uterus is exceptional in the absence of recurrent mid-trimester pregnancy loss. Hymenectomy may be necessary for tight constriction ring. Prevention of secondary complications: Prophylactic antibiotics or surgery as needed to prevent urinary tract infections or other complications of ureteral reflux or ureteropelvic junction obstruction; gynecologic examination prior to menstruation for small hymenal opening; pre-pregnancy evaluation of the vaginal and uterine anatomy because of the increased risk for premature labor and fetal loss associated with structural abnormalities of the uterus. Surveillance: Follow up with a urologist in the presence of vesicoureteral reflux and/or documented urinary tract infection. Hand-foot-genital syndrome is inherited in an autosomal dominant manner. The proportion of cases caused by a de novo pathogenic variant is unknown because of the small number of individuals described. If a parent of the proband is affected, the recurrence risk to the sibs is 50%. If the proband has a known HOXA13 pathogenic variant that cannot be detected in the leukocyte DNA of either parent, the recurrence risk to sibs is slightly greater than that of the general population because of the possibility of parental germline mosaicism. Each child of an individual with HFGS has a 50% chance of inheriting the pathogenic variant. Prenatal testing for a pregnancy at increased risk and preimplantation genetic testing are possible if the pathogenic variant in the family is known.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC30 artigos no totalmostrando 13

2023

Genetic and phenotypic continuum of HOXA genes: A case with double HOXA9/HOXA13 mutations.

Molecular medicine reports
2023

Hand-foot-genital syndrome due to a duplication variant in the GC-rich region of HOXA13.

European journal of medical genetics
2021

An unusual manifestation of Hand-Foot-Genital Syndrome: Embryonal Rhabdomyosarcoma - A case report.

Annals of medicine and surgery (2012)
2021

"Hand foot genital syndrome": Proposition of a new term, induced by Sunitinib in a patient of metastatic renal cell carcinoma.

Dermatologic therapy
2020

50 Years Ago in The Journal of Pediatrics: Hand-Foot-Genital Syndrome and Its Multiple Genetic Mechanisms.

The Journal of pediatrics
2019

Multifaceted Hoxa13 function in urogenital development underlies the Hand-Foot-Genital Syndrome.

Human molecular genetics
2018

Hand-foot-genital syndrome - analysis of two cases.

JBRA assisted reproduction
2017

7p15 deletion as the cause of hand-foot-genital syndrome: a case report, literature review and proposal of a minimum region for this phenotype.

Molecular cytogenetics
2017

A missense mutation of HOXA13 underlies hand-foot-genital syndrome in a Chinese family.

Journal of genetics
2017

Familial deletion of the HOXA gene cluster associated with Hand-Foot-Genital syndrome and phenotypic variability.

American journal of medical genetics. Part A
2016

A Chromosome 7 Pericentric Inversion Defined at Single-Nucleotide Resolution Using Diagnostic Whole Genome Sequencing in a Patient with Hand-Foot-Genital Syndrome.

PloS one
2016

[Whole-Exome Sequencing for monogenic disorders affecting the orthopaedic system].

Clinical calcium
2016

Dual genetic diagnoses: Atypical hand-foot-genital syndrome and developmental delay due to de novo mutations in HOXA13 and NRXN1.

American journal of medical genetics. Part A
Ver todos os 30 no EuropePMC

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

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 and phenotypic continuum of HOXA genes: A case with double HOXA9/HOXA13 mutations.
    Molecular medicine reports· 2023· PMID 36734258mais citado
  2. Hand-foot-genital syndrome due to a duplication variant in the GC-rich region of HOXA13.
    European journal of medical genetics· 2023· PMID 36702441mais citado
  3. An unusual manifestation of Hand-Foot-Genital Syndrome: Embryonal Rhabdomyosarcoma - A case report.
    Annals of medicine and surgery (2012)· 2021· PMID 33520218mais citado
  4. "Hand foot genital syndrome": Proposition of a new term, induced by Sunitinib in a patient of metastatic renal cell carcinoma.
    Dermatologic therapy· 2021· PMID 33480072mais citado
  5. 50 Years Ago in The Journal of Pediatrics: Hand-Foot-Genital Syndrome and Its Multiple Genetic Mechanisms.
    The Journal of pediatrics· 2020· PMID 32586521mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:2438(Orphanet)
  2. OMIM OMIM:140000(OMIM)
  3. MONDO:0007698(MONDO)
  4. GARD:2594(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q3508764(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 mão-pé-genital
Compêndio · Raras BR

Síndrome mão-pé-genital

ORPHA:2438 · MONDO:0007698
Prevalência
<1 / 1 000 000
Casos
33 casos conhecidos
Herança
Autosomal dominant
CID-10
Q51.2 · Outra duplicação do útero
CID-11
Início
Antenatal, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1841679
EuropePMC
Wikidata
Papers 10a
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