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Neuropatia motora distal hereditária tipo 5
ORPHA:139536CID-10 · G12.2CID-11 · 8B61.4DOENÇA RARA

Doença neuropática motora hereditária distal autossómica dominante rara caracterizada por fraqueza e atrofia muscular com envolvimento predominante das mãos, em particular os músculos tenar e o primeiro interósseo dorsal, e/ou deformidade acentuada do pé e distúrbio da marcha. A sensibilidade é normal, embora tenha sido descrita uma resposta reduzida à vibração. A doença apresenta uma progressão lenta com idade de início nas primeiras décadas de vida.

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Introdução

O que você precisa saber de cara

📋

Doença neuropática motora hereditária distal autossômica dominante rara características de fraqueza e atrofia muscular com envolvimento predominante das mãos, em particular os músculos tenar e o primeiro interósseo dorsal, e/ou deformidade acentuada do pé e distúrbio da marcha. A sensibilidade é normal, embora tenha sido descrita uma resposta reduzida à vibração. A doença apresenta uma progressão lenta com idade de início nas primeiras décadas de vida.

Publicações científicas
330 artigos
Último publicado: 2026 Jun
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: G12.2
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (2)
0202010694
Sequenciamento completo do exoma (WES)genetic_test
0301070040
Atendimento em reabilitação — doenças rarasrehabilitation
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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

💪
Músculos
11 sintomas
🦴
Ossos e articulações
4 sintomas
🧠
Neurológico
2 sintomas
🫃
Digestivo
1 sintomas

+ 13 sintomas em outras categorias

Características mais comuns

55%prev.
Marcha instável
Frequente (79-30%)
55%prev.
Câimbras nas mãos induzidas pelo frio
Frequente (79-30%)
55%prev.
Amiotrofia distal
Frequente (79-30%)
55%prev.
Sensação vibratória prejudicada
Frequente (79-30%)
55%prev.
Atrofia do primeiro músculo interósseo dorsal
Frequente (79-30%)
55%prev.
Fraqueza do músculo tenar
Frequente (79-30%)
31sintomas
Frequente (11)
Ocasional (4)
Muito raro (1)
Sem dados (15)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 31 características clínicas mais associadas, ordenadas por frequência.

Marcha instávelUnsteady gait
Frequente (79-30%)55%
Câimbras nas mãos induzidas pelo frioCold-induced hand cramps
Frequente (79-30%)55%
Amiotrofia distalDistal amyotrophy
Frequente (79-30%)55%
Sensação vibratória prejudicadaImpaired vibratory sensation
Frequente (79-30%)55%
Atrofia do primeiro músculo interósseo dorsalFirst dorsal interossei muscle atrophy
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa4desde 2022
Total histórico330PubMed
Últimos 10 anos4publicações
Pico20202 papers
Linha do tempo
2022Hoje · 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

3 genes identificados com associação a esta condição.

Autosomal dominant
GARS1Glycine--tRNA ligaseDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the ATP-dependent ligation of glycine to the 3'-end of its cognate tRNA, via the formation of an aminoacyl-adenylate intermediate (Gly-AMP) (PubMed:17544401, PubMed:24898252, PubMed:28675565). Also produces diadenosine tetraphosphate (Ap4A), a universal pleiotropic signaling molecule needed for cell regulation pathways, by direct condensation of 2 ATPs. Thereby, may play a special role in Ap4A homeostasis (PubMed:19710017)

LOCALIZAÇÃO

CytoplasmCell projection, axonSecretedSecreted, extracellular exosomeMitochondrion

VIAS BIOLÓGICAS (1)
Cytosolic tRNA aminoacylation
MECANISMO DE DOENÇA

Charcot-Marie-Tooth disease, axonal, type 2D

A dominant axonal form of Charcot-Marie-Tooth disease, a disorder of the peripheral nervous system, characterized by progressive weakness and atrophy, initially of the peroneal muscles and later of the distal muscles of the arms. Charcot-Marie-Tooth disease is classified in two main groups on the basis of electrophysiologic properties and histopathology: primary peripheral demyelinating neuropathies (designated CMT1 when they are dominantly inherited) and primary peripheral axonal neuropathies (CMT2). Neuropathies of the CMT2 group are characterized by signs of axonal degeneration in the absence of obvious myelin alterations, normal or slightly reduced nerve conduction velocities, and progressive distal muscle weakness and atrophy.

OUTRAS DOENÇAS (4)
neuronopathy, distal hereditary motor, type 5ACharcot-Marie-Tooth disease type 2Dspinal muscular atrophy, infantile, James typeneuronopathy, distal hereditary motor, type 5
HGNC:4162UniProt:P41250
REEP1Receptor expression-enhancing protein 1Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Required for endoplasmic reticulum (ER) network formation, shaping and remodeling; it links ER tubules to the cytoskeleton. May also enhance the cell surface expression of odorant receptors (PubMed:20200447). May play a role in long-term axonal maintenance (PubMed:24478229)

LOCALIZAÇÃO

MembraneMitochondrion membraneEndoplasmic reticulum

VIAS BIOLÓGICAS (1)
Expression and translocation of olfactory receptors
MECANISMO DE DOENÇA

Spastic paraplegia 31, autosomal dominant

A form of spastic paraplegia, a neurodegenerative disorder characterized by a slow, gradual, progressive weakness and spasticity of the lower limbs. Rate of progression and the severity of symptoms are quite variable. Initial symptoms may include difficulty with balance, weakness and stiffness in the legs, muscle spasms, and dragging the toes when walking. In some forms of the disorder, bladder symptoms (such as incontinence) may appear, or the weakness and stiffness may spread to other parts of the body.

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
67.0 TPM
Cólon sigmoide
61.1 TPM
Esôfago - Muscular
51.8 TPM
Esôfago - Junção
44.2 TPM
Artéria tibial
35.6 TPM
OUTRAS DOENÇAS (4)
hereditary spastic paraplegia 31spinal muscular atrophy, distal, autosomal recessive, 6neuronopathy, distal hereditary motor, type 5Bneuronopathy, distal hereditary motor, type 5
HGNC:25786UniProt:Q9H902
BSCL2SeipinDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Plays a crucial role in the formation of lipid droplets (LDs) which are storage organelles at the center of lipid and energy homeostasis (PubMed:19278620, PubMed:21533227, PubMed:30293840, PubMed:31708432). In association with LDAF1, defines the sites of LD formation in the ER (PubMed:31708432). Also required for growth and maturation of small nascent LDs into larger mature LDs (PubMed:27564575). Mediates the formation and/or stabilization of endoplasmic reticulum-lipid droplets (ER-LD) contacts

LOCALIZAÇÃO

Endoplasmic reticulum membraneLipid droplet

MECANISMO DE DOENÇA

Lipodystrophy, congenital generalized, 2

A form of congenital generalized lipodystrophy, a metabolic disorder characterized by a near complete absence of adipose tissue, extreme insulin resistance, hypertriglyceridemia, hepatic steatosis and early onset of diabetes. Inheritance is autosomal recessive.

OUTRAS DOENÇAS (5)
hereditary spastic paraplegia 17severe neurodegenerative syndrome with lipodystrophyneuronopathy, distal hereditary motor, type 5Ccongenital generalized lipodystrophy type 2
HGNC:15832UniProt:Q96G97

Variantes genéticas (ClinVar)

475 variantes patogênicas registradas no ClinVar.

🧬 BSCL2: NM_001122955.4(BSCL2):c.1006-2A>T ()
🧬 BSCL2: NM_001122955.4(BSCL2):c.1026_1027del (p.Asp342fs) ()
🧬 BSCL2: NM_001122955.4(BSCL2):c.324_325del (p.Ser109fs) ()
🧬 BSCL2: NM_001122955.4(BSCL2):c.878A>G (p.Asn293Ser) ()
🧬 BSCL2: NM_001122955.4(BSCL2):c.630+1G>T ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 714 variantes classificadas pelo ClinVar.

214
500
VUS (30.0%)
Benigna (70.0%)
VARIANTES MAIS SIGNIFICATIVAS
FBXO38: NM_205836.3(FBXO38):c.1617C>G (p.Asp539Glu) [Uncertain significance]
FBXO38: NM_205836.3(FBXO38):c.426+6T>G [Uncertain significance]
FBXO38: NM_205836.3(FBXO38):c.1553A>G (p.Asp518Gly) [Uncertain significance]
FBXO38: NM_205836.3(FBXO38):c.2279C>T (p.Ser760Phe) [Uncertain significance]
FBXO38: NM_205836.3(FBXO38):c.1282C>T (p.Arg428Ter) [Uncertain significance]

Vias biológicas (Reactome)

3 vias biológicas associadas aos genes desta condição.

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

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Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Neuropatia motora distal hereditária tipo 5

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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
173 papers (10 anos)

Mostrando amostra de 4 publicações de um total de 173

#1

In Vitro Toxicity of Chinese Russell's Viper (Daboia siamensis) Venom and Neutralisation by Antivenoms.

Toxins2022 Jul 20

Daboia siamensis (Russell's viper) is a highly venomous and medically important snake in China, as well as much of Asia. There is minimal information on the pharmacological activity of the venom of the Chinese species, and currently no commercially available specific antivenom in China. This has led to the use of non-specific antivenoms to treat D. siamensis envenomation. In this study, the in vitro neurotoxicity and myotoxicity of D. siamensis venom was examined and the efficacy of four antivenoms was investigated, including the recently developed Chinese D. siamensis monovalent antivenom (C-DsMAV) and three commercially available antivenoms (Thai D. siamensis (Thai-DsMAV) monovalent antivenom, Deinagkistrodon acutus monovalent antivenom (DaAV), and Gloydius brevicaudus monovalent antivenom (GbAV). D. siamensis venom (10-30 µg/mL) caused the concentration-dependent inhibition of indirect twitches in the chick biventer cervicis nerve muscle preparation, without abolishing contractile responses to exogenous agonists ACh or CCh, indicating pre-synaptic neurotoxicity. Myotoxicity was also evident at these concentrations with inhibition of direct twitches, an increase in baseline tension, and the partial inhibition of ACh, CCh, and KCl responses. The prior addition of C-DsMAV or Thai-DsMAV prevented the neurotoxic and myotoxic activity of D. siamensis venom (10 µg/mL). The addition of non-specific antivenoms (GbAV and DaAV) partially prevented the neurotoxic activity of venom (10 µg/mL) but failed to neutralize the myotoxic effects. We have shown that D. siamensis venom exhibits in vitro weak presynaptic neurotoxicity and myotoxicity, which can be prevented by the pre-addition of the Chinese and Thai Russell's viper antivenoms. Non-specific antivenoms were poorly efficacious. There should be further development of a monospecific antivenom against D. siamensis envenomation in China.

#2

GARS-related disease in infantile spinal muscular atrophy: Implications for diagnosis and treatment.

American journal of medical genetics. Part A2020 May

The majority of patients with spinal muscular atrophy (SMA) identified to date harbor a biallelic exonic deletion of SMN1. However, there have been reports of SMA-like disorders that are independent of SMN1, including those due to pathogenic variants in the glycyl-tRNA synthetase gene (GARS1). We report three unrelated patients with de novo variants in GARS1 that are associated with infantile-onset SMA (iSMA). Patients were ascertained during inpatient hospital evaluations for complications of neuropathy. Evaluations were completed as indicated for clinical care and management and informed consent for publication was obtained. One newly identified, disease-associated GARS1 variant, identified in two out of three patients, was analyzed by functional studies in yeast complementation assays. Genomic analyses by exome and/or gene panel and SMN1 copy number analysis of three patients identified two previously undescribed de novo missense variants in GARS1 and excluded SMN1 as the causative gene. Functional studies in yeast revealed that one of the de novo GARS1 variants results in a loss-of-function effect, consistent with other pathogenic GARS1 alleles. In sum, the patients' clinical presentation, assessments of previously identified GARS1 variants and functional assays in yeast suggest that the GARS1 variants described here cause iSMA. GARS1 variants have been previously associated with Charcot-Marie-Tooth disease (CMT2D) and distal SMA type V (dSMAV). Our findings expand the allelic heterogeneity of GARS-associated disease and support that severe early-onset SMA can be caused by variants in this gene. Distinguishing the SMA phenotype caused by SMN1 variants from that due to pathogenic variants in other genes such as GARS1 significantly alters approaches to treatment.

#3

Clinical and Genetic Features in a Series of Eight Unrelated Patients with Neuropathy Due to Glycyl-tRNA Synthetase (GARS) Variants.

Journal of neuromuscular diseases2020

Pathogenic variants in the Glycyl-tRNA synthetase gene cause the allelic disorders Charcot-Marie-Tooth disease type 2D and distal hereditary motor neuropathy type V. We describe clinical features in 8 unrelated patients found to have Glycyl-tRNA synthetase variants by Next Generation Sequencing. In addition to upper limb predominant symptoms, other presentations included failure to thrive, feeding difficulties and lower limb dominant symptoms. Variability in the age at testing ranged from 14 months to 59 years. The youngest being symptomatic from 3 months and ventilator-dependent. Sequence variants were reported as pathogenic, p.(Glu125Lys), p.(His472Arg); likely pathogenic, p.(His216Arg), p.(Gly327Arg), p.(Lys510Gln), p.(Met555Val); and of uncertain significance, p.(Arg27Pro). Our case series describes novel Glycyl-tRNA synthetase variants and demonstrates the clinical utility of Next Generation Sequencing testing for patients with hereditary neuropathy. Identification of novel variants by Next Generation Sequencing illustrates that there exists a wide spectrum of clinical features and supports the newer simplified classification of neuropathies.

#4

Clinical and Molecular Characterization of BSCL2 Mutations in a Taiwanese Cohort with Hereditary Neuropathy.

PloS one2016

A small group of patients with inherited neuropathy that has been shown to be caused by mutations in the BSCL2 gene. However, little information is available about the role of BSCL2 mutations in inherited neuropathies in Taiwan. Utilizing targeted sequencing, 76 patients with molecularly unassigned Charcot-Marie-Tooth disease type 2 (CMT2) and 8 with distal hereditary motor neuropathy (dHMN), who were selected from 348 unrelated patients with inherited neuropathies, were screened for mutations in the coding regions of BSCL2. Two heterozygous BSCL2 mutations, p.S90L and p.R96H, were identified, of which the p.R96H mutation is novel. The p.S90L was identified in a pedigree with CMT2 while the p.R96H was identified in a patient with apparently sporadic dHMN. In vitro studies demonstrated that the p.R96H mutation results in a remarkably low seipin expression and reduced cell viability. BSCL2 mutations account for a small number of patients with inherited neuropathies in Taiwan. The p.R96H mutation is associated with dHMN. This study expands the molecular spectrum of BSCL2 mutations and also emphasizes the pathogenic role of BSCL2 mutations in molecularly unassigned hereditary neuropathies.

Publicações recentes

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Comunidades

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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. In Vitro Toxicity of Chinese Russell's Viper (Daboia siamensis) Venom and Neutralisation by Antivenoms.
    Toxins· 2022· PMID 35878244mais citado
  2. GARS-related disease in infantile spinal muscular atrophy: Implications for diagnosis and treatment.
    American journal of medical genetics. Part A· 2020· PMID 32181591mais citado
  3. Clinical and Genetic Features in a Series of Eight Unrelated Patients with Neuropathy Due to Glycyl-tRNA Synthetase (GARS) Variants.
    Journal of neuromuscular diseases· 2020· PMID 31985473mais citado
  4. Clinical and Molecular Characterization of BSCL2 Mutations in a Taiwanese Cohort with Hereditary Neuropathy.
    PloS one· 2016· PMID 26815532mais citado
  5. Novel VRK1 Variants and a Founder Effect in Axonal Polyneuropathy.
    Neurol Genet· 2026· PMID 41994224recente
  6. Molecular, cellular, and clinical aspects of myofibrillar myopathy caused by HSPB8 frameshift mutations.
    Biochim Biophys Acta Mol Basis Dis· 2026· PMID 41951012recente
  7. Novel Biallelic PLEKHG5 Variant Associated With Intermediate Charcot-Marie-Tooth Disease: Case Report From South America.
    J Peripher Nerv Syst· 2026· PMID 41562385recente
  8. Muscle MRI Contributes to the Differential Diagnosis Between Distal Myopathies and Distal Hereditary Motor Neuropathies.
    Eur J Neurol· 2026· PMID 41503725recente
  9. SIGMAR1 gene-related neuromuscular disorders - what do we know?
    Neurol Neurochir Pol· 2026· PMID 41334667recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:139536(Orphanet)
  2. MONDO:0100350(MONDO)
  3. GARD:16955(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q66084899(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

Neuropatia motora distal hereditária tipo 5
Compêndio · Raras BR

Neuropatia motora distal hereditária tipo 5

ORPHA:139536 · MONDO:0100350
CID-10
G12.2 · Doença do neurônio motor
CID-11
Início
Adolescent, Adult, Childhood
MedGen
UMLS
C1833308
EuropePMC
Wikidata
Papers 10a
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