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Esclerose lateral amiotrófica, tipo 4
ORPHA:357043CID-10 · G12.2CID-11 · 8B60.0OMIM 602433PCDT · SUSDOENÇA RARA

Qualquer Esclerose Lateral Amiotrófica (ELA) em que a causa da doença é uma mutação no gene SETX.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Qualquer Esclerose Lateral Amiotrófica (ELA) em que a causa da doença é uma mutação no gene SETX.

Pesquisas ativas
1 ensaio
2 total registrados no ClinicalTrials.gov
Publicações científicas
15 artigos
Último publicado: 2025 Jul 10

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
70
pacientes catalogados
Início
Adolescent
+ childhood
🏥
SUS: Cobertura parcialScore: 65%
PCDT disponível2 medicamentos CEAFCID-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

Preparando trilha educativa...

Sinais e sintomas

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

Partes do corpo afetadas

💪
Músculos
4 sintomas
🧠
Neurológico
2 sintomas

+ 20 sintomas em outras categorias

Características mais comuns

100%prev.
Degeneração das células do corno anterior
Frequência: 2/2
100%prev.
Atrofia da medula espinhal
Frequência: 2/2
55%prev.
Atrofia do músculo esquelético
Frequente (79-30%)
55%prev.
Sinal de Babinski
Frequente (79-30%)
55%prev.
Sinal piramidal anormal
Frequente (79-30%)
55%prev.
Fraqueza muscular distal
Frequente (79-30%)
26sintomas
Muito frequente (2)
Frequente (4)
Ocasional (5)
Sem dados (15)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 26 características clínicas mais associadas, ordenadas por frequência.

Degeneração das células do corno anteriorDegeneration of anterior horn cells
Frequência: 2/2100%
Atrofia da medula espinhalAtrophy of the spinal cord
Frequência: 2/2100%
Atrofia do músculo esqueléticoSkeletal muscle atrophy
Frequente (79-30%)55%
Sinal de BabinskiBabinski sign
Frequente (79-30%)55%
Sinal piramidal anormalAbnormal pyramidal sign
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico15PubMed
Últimos 10 anos13publicações
Pico20214 papers
Linha do tempo
2025Hoje · 2026🧪 2020Primeiro ensaio clínico📈 2021Ano 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

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

SETXHelicase senataxinDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

ATP-dependent 5'->3' DNA/RNA helicase that preferentially unwinds RNA substrates over DNA, playing a crucial role in resolving R-loops and promoting transcription termination (PubMed:36864660). Plays a role in transcription regulation by its ability to modulate RNA Polymerase II (Pol II) binding to chromatin and through its interaction with proteins involved in transcription (PubMed:19515850, PubMed:21700224). Contributes to the mRNA splicing efficiency and splice site selection (PubMed:19515850

LOCALIZAÇÃO

NucleusNucleus, nucleoplasmNucleus, nucleolusCytoplasmChromosomeChromosome, telomereCell projection, axonCell projection, growth cone

MECANISMO DE DOENÇA

Spinocerebellar ataxia, autosomal recessive, with axonal neuropathy 2

A form of spinocerebellar ataxia, a clinically and genetically heterogeneous group of cerebellar disorders. Patients show progressive incoordination of gait and often poor coordination of hands, speech and eye movements, due to degeneration of the cerebellum with variable involvement of the brainstem and spinal cord. SCAN2 is an autosomal recessive form associated with peripheral neuropathy and elevated serum alpha-fetoprotein, immunoglobulins and, less commonly, creatine kinase levels. Some SCAN2 patients manifest oculomotor apraxia.

EXPRESSÃO TECIDUAL(Ubíquo)
Testículo
50.4 TPM
Linfócitos
39.4 TPM
Tireoide
36.1 TPM
Baço
32.8 TPM
Pulmão
25.9 TPM
OUTRAS DOENÇAS (2)
spinocerebellar ataxia, autosomal recessive, with axonal neuropathy 2amyotrophic lateral sclerosis type 4
HGNC:445UniProt:Q7Z333

Medicamentos aprovados (FDA)

1 medicamento encontrado nos registros da FDA americana.

💊 RADICAVA (EDARAVONE)
Ver no DailyMed/FDA

Variantes genéticas (ClinVar)

375 variantes patogênicas registradas no ClinVar.

🧬 SETX: NM_015046.7(SETX):c.22A>G (p.Thr8Ala) ()
🧬 SETX: NM_015046.7(SETX):c.4174_4214dup (p.Ala1406fs) ()
🧬 SETX: NM_015046.7(SETX):c.4633_4636del (p.Ser1545fs) ()
🧬 SETX: NM_015046.7(SETX):c.1312T>C (p.Ser438Pro) ()
🧬 SETX: NM_015046.7(SETX):c.3199A>G (p.Thr1067Ala) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 1,502 variantes classificadas pelo ClinVar.

676
826
VUS (45.0%)
Benigna (55.0%)
VARIANTES MAIS SIGNIFICATIVAS
SETX: NM_015046.7(SETX):c.3296A>T (p.Asp1099Val) [Uncertain significance]
SETX: NM_015046.7(SETX):c.5371G>A (p.Ala1791Thr) [Uncertain significance]
SETX: NM_015046.7(SETX):c.2002AAT[1] (p.Asn669del) [Uncertain significance]
SETX: NM_015046.7(SETX):c.2218ATA[1] (p.Ile741del) [Uncertain significance]
SETX: NM_015046.7(SETX):c.7930_7932del (p.Glu2644del) [Uncertain significance]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

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.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Esclerose lateral amiotrófica, tipo 4

🗺️

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

🟢 Recrutando agora

1 pesquisa recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

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Publicações mais relevantes

Timeline de publicações
13 papers (10 anos)
#1

Allele-specific silencing of a dominant SETX mutation in familial amyotrophic lateral sclerosis type 4.

HGG advances2025 Jul 10

Amyotrophic lateral sclerosis 4 (ALS4) is an autosomal dominant motor neuron disease that is molecularly characterized by reduced R-loop levels and caused by pathogenic variants in senataxin (SETX). SETX encodes an RNA/DNA helicase that resolves three-stranded nucleic acid structures called R-loops. Currently, there are no disease-modifying therapies available for ALS4. Given that SETX is haplosufficient, removing the product of the mutated allele presents a potential therapeutic strategy. We designed a series of siRNAs to selectively target the RNA transcript from the ALS4 allele containing the c.1166T>C mutation (p.Leu389Ser). Transfection of HEK293 cells with siRNA and plasmids encoding either wild-type or mutant (Leu389Ser) epitope-tagged SETX revealed that three siRNAs specifically reduced mutant SETX protein levels while having minimal effect on the wild-type SETX protein. In ALS4 primary fibroblasts, siRNA treatment silenced the endogenous mutant SETX allele while sparing the wild-type allele and restored R-loop levels in patient cells. Our findings demonstrate that mutant SETX, differing from wild-type by a single nucleotide, can be effectively and specifically silenced by RNA interference.

#2

Role of senataxin in R-loop-mediated neurodegeneration.

Brain communications2024

Senataxin is an RNA:DNA helicase that plays an important role in the resolution of RNA:DNA hybrids (R-loops) formed during transcription. R-loops are involved in the regulation of biological processes such as immunoglobulin class switching, gene expression and DNA repair. Excessive accumulation of R-loops results in DNA damage and loss of genomic integrity. Senataxin is critical for maintaining optimal levels of R-loops to prevent DNA damage and acts as a genome guardian. Within the nucleus, senataxin interacts with various RNA processing factors and DNA damage response and repair proteins. Senataxin interactors include survival motor neuron and zinc finger protein 1, with whom it co-localizes in sub-nuclear bodies. Despite its ubiquitous expression, mutations in senataxin specifically affect neurons and result in distinct neurodegenerative diseases such as amyotrophic lateral sclerosis type 4 and ataxia with oculomotor apraxia type 2, which are attributed to the gain-of-function and the loss-of-function mutations in senataxin, respectively. In addition, low levels of senataxin (loss-of-function) in spinal muscular atrophy result in the accumulation of R-loops causing DNA damage and motor neuron degeneration. Senataxin may play multiple functions in diverse cellular processes; however, its emerging role in R-loop resolution and maintenance of genomic integrity is gaining attention in the field of neurodegenerative diseases. In this review, we highlight the role of senataxin in R-loop resolution and its potential as a therapeutic target to treat neurodegenerative diseases.

#3

Allele-specific silencing of a dominant SETX mutation in familial amyotrophic lateral sclerosis type 4.

bioRxiv : the preprint server for biology2024 Oct 12

Amyotrophic lateral sclerosis 4 (ALS4) is an autosomal dominant motor neuron disease that is molecularly characterized by reduced R-loop levels and caused by pathogenic variants in senataxin (SETX). SETX encodes an RNA/DNA helicase that resolves three-stranded nucleic acid structures called R-loops. Currently, there are no disease-modifying therapies available for ALS4. Given that SETX is haplosufficient, removing the product of the mutated allele presents a potential therapeutic strategy. We designed a series of siRNAs to selectively target the RNA transcript from the ALS4 allele containing the c.1166T>C mutation (p.Leu389Ser). Transfection of HEK293 cells with siRNA and plasmids encoding either wild-type or mutant (Leu389Ser) epitope tagged SETX revealed that three siRNAs specifically reduced mutant SETX protein levels without affecting the wild-type SETX protein. In ALS4 primary fibroblasts, siRNA treatment silenced the endogenous mutant SETX allele, while sparing the wild-type allele, and restored R-loop levels in patient cells. Our findings demonstrate that mutant SETX, differing from wild-type by a single nucleotide, can be effectively and specifically silenced by RNA interference, highlighting the potential of allele-specific siRNA as a therapeutic approach for ALS4.

#4

Altered SYNJ2BP-mediated mitochondrial-ER contacts in motor neuron disease.

Neurobiology of disease2022 Oct 01

Synaptojanin 2 binding protein (SYNJ2BP) is an outer mitochondrial membrane protein with a cytosolic PDZ domain that functions as a cellular signaling hub. Few studies have evaluated its role in disease. Here we use induced pluripotent stem cell (iPSC)-derived motor neurons and post-mortem tissue from patients with two hereditary motor neuron diseases, spinal and bulbar muscular atrophy (SBMA) and amyotrophic lateral sclerosis type 4 (ALS4), and show that SYNJ2BP expression is increased in diseased motor neurons. Similarly, we show that SYNJ2BP expression increases in iPSC-derived motor neurons undergoing stress. Using proteomic analysis, we found that elevated SYNJ2BP alters the cellular distribution of mitochondria and increases mitochondrial-ER membrane contact sites. Furthermore, decreasing SYNJ2BP levels improves mitochondrial oxidative function in the diseased motor neurons. Together, our observations offer new insight into the molecular pathology of motor neuron disease and the role of SYNJ2BP in mitochondrial dysfunction.

#5

Unusual electrophysiological findings in a Chinese ALS 4 family with SETX-L389S mutation: a three-year follow-up.

Journal of neurology2021 Mar

Amyotrophic lateral sclerosis type 4 (ALS4) is a familial form of ALS caused by mutations in the SETX gene. To date, there are seven unrelated ALS4 families with four missense mutations (L389S, T31I, R2136H, and M386T) in SETX. ALS4 is characterized by early onset, distal muscle weakness and atrophy, pyramidal signs, and the absence of sensory deficits. Motor conduction studies often present normality or reduced amplitudes of compound muscle action potential (CMAP). The conduction blocks (CBs) are rare and only observed in one male of an Italian ALS4 family. Our study showed that seven symptomatic patients presented the classical ALS4 phenotype with two asymptomatic females in a Chinese family spanning three generations. Sequencing analysis revealed a heterozygous c.1166T > C/p.L389S mutation in SETX that co-segregated with disease phenotype in the family. The same mutation has been identified previously in three ALS4 families from the United States and Italy, respectively. Specifically, three young males presented multiple CBs and abnormal temporal dispersions (TD) in the median, ulnar and tibial nerves over the three-year follow-up period. Moreover, for the first time, we found that senataxin was also expressed in the myelin sheath of peripheral nerves besides axons. The study indicates that CBs and abnormal TD are the characteristics in the ALS4 family, providing pivotal familial evidence of CBs and TD of motor nerves in ALS4. The unusual electrophysiological features may be associated with the expression of senataxin in peripheral nerves.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC17.515 artigos no totalmostrando 12

2025

Allele-specific silencing of a dominant SETX mutation in familial amyotrophic lateral sclerosis type 4.

HGG advances
2024

Role of senataxin in R-loop-mediated neurodegeneration.

Brain communications
2022

Altered SYNJ2BP-mediated mitochondrial-ER contacts in motor neuron disease.

Neurobiology of disease
2021

De novo pathogenic variant in SETX causes a rapidly progressive neurodegenerative disorder of early childhood-onset with severe axonal polyneuropathy.

Acta neuropathologica communications
2021

SUMOylated Senataxin functions in genome stability, RNA degradation, and stress granule disassembly, and is linked with inherited ataxia and motor neuron disease.

Molecular genetics &amp; genomic medicine
2021

Unusual electrophysiological findings in a Chinese ALS 4 family with SETX-L389S mutation: a three-year follow-up.

Journal of neurology
2021

SETX (senataxin), the helicase mutated in AOA2 and ALS4, functions in autophagy regulation.

Autophagy
2020

Tight expression regulation of senataxin, linked to motor neuron disease and ataxia, is required to avert cell-cycle block and nucleolus disassembly.

Heliyon
2020

[A case of motor and sensory polyneuropathy and respiratory failure with novel heterozygous mutation of the senataxin gene].

Rinsho shinkeigaku = Clinical neurology
2018

Senataxin mutations elicit motor neuron degeneration phenotypes and yield TDP-43 mislocalization in ALS4 mice and human patients.

Acta neuropathologica
2017

Senataxin: Genome Guardian at the Interface of Transcription and Neurodegeneration.

Journal of molecular biology
2016

Human Senataxin Modulates Structural Plasticity of the Neuromuscular Junction in Drosophila through a Neuronally Conserved TGFβ Signalling Pathway.

Neuro-degenerative diseases
Ver todos os 17.515 no EuropePMC

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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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. Allele-specific silencing of a dominant SETX mutation in familial amyotrophic lateral sclerosis type 4.
    HGG advances· 2025· PMID 40200577mais citado
  2. Role of senataxin in R-loop-mediated neurodegeneration.
    Brain communications· 2024· PMID 39070547mais citado
  3. Allele-specific silencing of a dominant SETX mutation in familial amyotrophic lateral sclerosis type 4.
    bioRxiv : the preprint server for biology· 2024· PMID 39416141mais citado
  4. Altered SYNJ2BP-mediated mitochondrial-ER contacts in motor neuron disease.
    Neurobiology of disease· 2022· PMID 35907632mais citado
  5. Unusual electrophysiological findings in a Chinese ALS 4 family with SETX-L389S mutation: a three-year follow-up.
    Journal of neurology· 2021· PMID 32997296mais citado
  6. De novo pathogenic variant in SETX causes a rapidly progressive neurodegenerative disorder of early childhood-onset with severe axonal polyneuropathy.
    Acta Neuropathol Commun· 2021· PMID 34922620recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:357043(Orphanet)
  2. OMIM OMIM:602433(OMIM)
  3. MONDO:0011223(MONDO)
  4. Esclerose Lateral Amiotrofica(PCDT · Ministério da Saúde)
  5. GARD:10502(GARD (NIH))
  6. Variantes catalogadas(ClinVar)
  7. Busca completa no PubMed(PubMed)
  8. Q18553715(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

Esclerose lateral amiotrófica, tipo 4
Compêndio · Raras BR

Esclerose lateral amiotrófica, tipo 4

ORPHA:357043 · MONDO:0011223
🇧🇷 Brasil SUS
CEAF
1ARiluzolEdaravona
Geral
Prevalência
<1 / 1 000 000
Casos
70 casos conhecidos
Herança
Autosomal dominant
CID-10
G12.2 · Doença do neurônio motor
CID-11
Ensaios
1 ativos
Início
Adolescent, Childhood
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1865409
Wikidata
Papers 10a
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