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Hipomielinização com atrofia dos gânglios basais e do cerebelo
ORPHA:139441CID-10 · E75.2CID-11 · 8A44.3OMIM 612438DOENÇA RARA

Uma leucodistrofia caracterizada por rigidez muscular (espasticidade) que avança lentamente, distúrbios de movimento que afetam músculos de forma involuntária (como distonia, que causa contrações musculares e posturas anormais; coreoatetose, com movimentos rápidos e bruscos ou lentos e contorcidos; e rigidez, que deixa os músculos duros), falta de coordenação motora (ataxia cerebelar), dificuldades cognitivas (para pensar, aprender e memorizar) de grau moderado a grave, e dificuldade para falar ou incapacidade total de articular as palavras (disartria/anartria).

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Uma leucodistrofia caracterizada por rigidez muscular (espasticidade) que avança lentamente, distúrbios de movimento que afetam músculos de forma involuntária (como distonia, que causa contrações musculares e posturas anormais; coreoatetose, com movimentos rápidos e bruscos ou lentos e contorcidos; e rigidez, que deixa os músculos duros), falta de coordenação motora (ataxia cerebelar), dificuldades cognitivas (para pensar, aprender e memorizar) de grau moderado a grave, e dificuldade para falar ou incapacidade total de articular as palavras (disartria/anartria).

Pesquisas ativas
1 ensaio
2 total registrados no ClinicalTrials.gov
Publicações científicas
10 artigos
Último publicado: 1993

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
216
pacientes catalogados
Início
Childhood
+ infancy, neonatal
🏥
SUS: Cobertura mínimaScore: 20%
CID-10: E75.2
🇧🇷Dados SUS / DATASUS2024
890
internações/ano
R$ 45.670
custo médio/internação
ESTADOS COM MAIS INTERNAÇÕES
SPRJMGRSPR
PROCEDIMENTOS SIGTAP (8)
0202010279
Dosagem de aminoácidos (erros inatos)metabolic_test
0202010295
Dosagem de ácidos orgânicos na urinagenetic_test
0202010490
Teste de triagem para erros inatos do metabolismonewborn_screening
0202010694
Sequenciamento completo do exoma (WES)enzyme_replacement
0202080013
Teste do pezinho (triagem neonatal)rehabilitation
0303050101
Infusão de imiglucerase (Gaucher)
+2 outros procedimentos
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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

🧠
Neurológico
12 sintomas
👁️
Olhos
3 sintomas
💪
Músculos
2 sintomas
🦴
Ossos e articulações
1 sintomas
👂
Ouvidos
1 sintomas

+ 12 sintomas em outras categorias

Características mais comuns

100%prev.
Disartria
Frequência: 11/11
100%prev.
Espasticidade
Frequência: 11/11
100%prev.
Leucodistrofia
Frequência: 11/11
100%prev.
Regressão do desenvolvimento
Frequência: 11/11
91%prev.
Distonia
Frequência: 10/11
82%prev.
Rigidez
Frequência: 9/11
31sintomas
Muito frequente (7)
Frequente (5)
Ocasional (7)
Sem dados (12)

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

DisartriaDysarthria
Frequência: 11/11100%
EspasticidadeSpasticity
Frequência: 11/11100%
LeucodistrofiaLeukodystrophy
Frequência: 11/11100%
Regressão do desenvolvimentoDevelopmental regression
Frequência: 11/11100%
DistoniaDystonia
Frequência: 10/1191%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico10PubMed
Últimos 10 anos7publicações
Pico20202 papers
Linha do tempo
2026Hoje · 2026🧪 2016Primeiro ensaio clínico
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: Autosomal dominant, Autosomal recessive.

UFM1Ubiquitin-fold modifier 1Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Ubiquitin-like modifier which can be covalently attached via an isopeptide bond to lysine residues of substrate proteins as a monomer or a lysine-linked polymer (PubMed:15071506, PubMed:20018847, PubMed:27653677, PubMed:29868776, PubMed:30626644, PubMed:38377992, PubMed:38383785). The so-called ufmylation, requires the UFM1-activating E1 enzyme UBA5, the UFM1-conjugating E2 enzyme UFC1, and the UFM1-ligase E3 enzyme UFL1 (PubMed:15071506, PubMed:20018847, PubMed:27653677, PubMed:29868776). Ufmyl

LOCALIZAÇÃO

NucleusCytoplasm

VIAS BIOLÓGICAS (1)
Antigen processing: Ubiquitination & Proteasome degradation
MECANISMO DE DOENÇA

Leukodystrophy, hypomyelinating, 14

An autosomal recessive, severe disorder characterized by atrophy of the basal ganglia and cerebellum, hypomyelination, severe developmental delay, typically without intentional movements and language development, and microcephaly. Almost all patients exhibit spasticity, extrapyramidal movement abnormalities, and severe drug-resistant epilepsy. Disease onset is early in infancy, and most patients die in the first years of life.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
90.1 TPM
Cervix Endocervix
74.8 TPM
Ovário
72.0 TPM
Cervix Ectocervix
67.2 TPM
Útero
63.0 TPM
OUTRAS DOENÇAS (2)
leukodystrophy, hypomyelinating, 14hypomyelinating leukodystrophy 6
HGNC:20597UniProt:P61960
TUBB4ATubulin beta-4A chainDisease-causing germline mutation(s) inRestrito
FUNÇÃO

Tubulin is the major constituent of microtubules, a cylinder consisting of laterally associated linear protofilaments composed of alpha- and beta-tubulin heterodimers. Microtubules grow by the addition of GTP-tubulin dimers to the microtubule end, where a stabilizing cap forms. Below the cap, tubulin dimers are in GDP-bound state, owing to GTPase activity of alpha-tubulin

LOCALIZAÇÃO

Cytoplasm, cytoskeleton

VIAS BIOLÓGICAS (10)
HCMV Early EventsPKR-mediated signalingGap junction assemblyAggrephagyAssembly and cell surface presentation of NMDA receptors
MECANISMO DE DOENÇA

Dystonia 4, torsion, autosomal dominant

A form of torsion dystonia, a disease defined by the presence of sustained involuntary muscle contractions, often leading to abnormal postures. 'Torsion' refers to the twisting nature of body movements, often affecting the trunk. DYT4 is characterized by onset in the second to third decade of progressive laryngeal dysphonia followed by the involvement of other muscles, such as the neck or limbs. Some patients develop an ataxic gait.

EXPRESSÃO TECIDUAL(Tecido-específico)
Cérebro - Hemisfério cerebelar
988.8 TPM
Cerebelo
895.3 TPM
Brain Spinal cord cervical c-1
446.2 TPM
Brain Frontal Cortex BA9
305.6 TPM
Córtex cerebral
258.5 TPM
OUTRAS DOENÇAS (2)
torsion dystonia 4hypomyelinating leukodystrophy 6
HGNC:20774UniProt:P04350

Variantes genéticas (ClinVar)

166 variantes patogênicas registradas no ClinVar.

🧬 TUBB4A: NM_006087.4(TUBB4A):c.685G>T (p.Val229Leu) ()
🧬 TUBB4A: NM_006087.4(TUBB4A):c.566_567del (p.Val189fs) ()
🧬 TUBB4A: NM_006087.4(TUBB4A):c.1229A>G (p.Glu410Gly) ()
🧬 TUBB4A: NM_006087.4(TUBB4A):c.1318G>A (p.Glu440Lys) ()
🧬 TUBB4A: NM_006087.4(TUBB4A):c.898A>G (p.Met300Val) ()
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

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
·Pré-clínico2
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 — Hipomielinização com atrofia dos gânglios basais e do cerebelo

🗺️

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

2 ensaios clínicos encontrados, 1 ativos.

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

Timeline de publicações
8 papers (10 anos)
#1

4-aminopyridine improves evoked potentials and ambulation in the taiep rat: A model of hypomyelination with atrophy of basal ganglia and cerebellum.

PloS one2024

The taiep rat is a tubulin mutant with an early hypomyelination followed by progressive demyelination of the central nervous system due to a point mutation in the Tubb4a gene. It shows clinical, radiological, and pathological signs like those of the human leukodystrophy hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC). Taiep rats had tremor, ataxia, immobility episodes, epilepsy, and paralysis; the acronym of these signs given the name to this autosomal recessive trait. The aim of this study was to analyze the characteristics of somatosensory evoked potentials (SSEPs) and motor evoked potentials (MEPs) in adult taiep rats and in a patient suffering from H-ABC. Additionally, we evaluated the effects of 4-aminopyridine (4-AP) on sensory responses and locomotion and finally, we compared myelin loss in the spinal cord of adult taiep and wild type (WT) rats using immunostaining. Our results showed delayed SSEPs in the upper and the absence of them in the lower extremities in a human patient. In taiep rats SSEPs had a delayed second negative evoked responses and were more susceptible to delayed responses with iterative stimulation with respect to WT. MEPs were produced by bipolar stimulation of the primary motor cortex generating a direct wave in WT rats followed by several indirect waves, but taiep rats had fused MEPs. Importantly, taiep SSEPs improved after systemic administration of 4-AP, a potassium channel blocker, and this drug induced an increase in the horizontal displacement measured in a novelty-induced locomotor test. In taiep subjects have a significant decrease in the immunostaining of myelin in the anterior and ventral funiculi of the lumbar spinal cord with respect to WT rats. In conclusion, evoked potentials are useful to evaluate myelin alterations in a leukodystrophy, which improved after systemic administration of 4-AP. Our results have a translational value because our findings have implications in future medical trials for H-ABC patients or with other leukodystrophies.

#2

Generation of three induced Pluripotent Stem Cell lines from individuals with Hypomyelination with Atrophy of Basal Ganglia and Cerebellum caused by a c.745G>A (p.D249N) autosomal dominant mutation in TUBB4A.

Stem cell research2023 Jun

Mutations in tubulin alpha 4a (TUBB4A) result in a spectrum of leukodystrophies, including Hypomyelination with atrophy of basal ganglia and cerebellum (H-ABC), resulting from a recurring mutation p.Asp249Asn (TUBB4AD249N). H-ABC presents with dystonia, motor and cognitive impairment and pathological features of hypomyelination and loss of cerebellar and striatal neurons. We have generated three induced pluripotent stem cell (iPSC) lines from fibroblast and peripheral blood mononuclear cells (PBMCs) of individuals with TUBB4AD249N mutation. The iPSCs were assessed to confirm a normal karyotype, pluripotency, and trilineage differentiation potential. The iPSCs will allow for disease modeling, understanding mechanisms and testing of therapeutic targets.

#3

Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (HABC) Due to UFM1 Mutation in Roma Patients - Severe Early Encephalopathy with Stridor and Severe Hearing and Visual Impairment. A Single Center Experience.

CNS &amp; neurological disorders drug targets2023

Hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC) is a neurodegenerative disease with neurodevelopmental delay, motor, and speech regression, pronounced extrapyramidal syndrome, and sensory deficits due to TUBB4A mutation. In 2017, a severe variant was described in 16 Roma infants due to mutation in UFM1. The objective of this study is to expand the clinical manifestations of H-ABC due to UFM1 mutation and suggest clues for clinical diagnosis. Retrospective analysis of all 9 cases with H-ABC due to c.-273_-271delTCA mutation in UFM1 treated during 2013-2020 in a Neuropediatric Ward in Plovdiv, Bulgaria. Presentation is no later than 2 months with inspiratory stridor, impaired sucking, swallowing, vision and hearing, and reduced active movements. By the age of 10 months, a monomorphic disease was observed: microcephaly (6/9), malnutrition (5/9), muscle hypertonia (9/9) and axial hypotonia (4/9), progressing to opisthotonus (6/9), dystonic posturing (5/9), nystagmoid ocular movements (6/9), epileptic seizures (4/9), non-epileptic spells (3/9). Dysphagia (7/9), inspiratory stridor (9/9), dyspnea (5/9), bradypnea (5/9), apnea (2/9) were major signs. Vision and hearing were never achieved or lost by 4-8 mo. Neurodevelopment was absent or minimal with subsequent regression after 2-5 mo. Brain imaging revealed cortical atrophy (7/9), atrophic ventricular dilatation (4/9), macrocisterna magna (5/9), reduced myelination (6/6), corpus callosum atrophy (3/6) and abnormal putamen and caput nuclei caudati. The age at death was between 8 and 18 mo. Roma patients with severe encephalopathy in early infancy with stridor, opisthotonus, bradypnea, severe hearing and visual impairment should be tested for the Roma founder mutation of H-ABC in UFM1.

#4

A new entity of hypomyelination with atrophy of basal ganglia and cerebellum-like syndrome with bilateral developmental cataract.

Indian journal of ophthalmology2022 Jul
#5

TUBB4A mutations result in both glial and neuronal degeneration in an H-ABC leukodystrophy mouse model.

eLife2020 May 28

Mutations in TUBB4A result in a spectrum of leukodystrophy including Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (H-ABC), a rare hypomyelinating leukodystrophy, often associated with a recurring variant p.Asp249Asn (D249N). We have developed a novel knock-in mouse model harboring heterozygous (Tubb4aD249N/+) and the homozygous (Tubb4aD249N/D249N) mutation that recapitulate the progressive motor dysfunction with tremor, dystonia and ataxia seen in H-ABC. Tubb4aD249N/D249N mice have myelination deficits along with dramatic decrease in mature oligodendrocytes and their progenitor cells. Additionally, a significant loss occurs in the cerebellar granular neurons and striatal neurons in Tubb4aD249N/D249N mice. In vitro studies show decreased survival and dysfunction in microtubule dynamics in neurons from Tubb4aD249N/D249N mice. Thus Tubb4aD249N/D249N mice demonstrate the complex cellular physiology of H-ABC, likely due to independent effects on oligodendrocytes, striatal neurons, and cerebellar granule cells in the context of altered microtubule dynamics, with profound neurodevelopmental deficits. Inside human and other animal cells, filaments known as microtubules help support the shape of the cell and move proteins to where they need to be. Defects in microtubules may lead to disease. For example, genetic mutations affecting a microtubule component called TUBB4A cause a rare brain disease in humans known as H-ABC. Individuals with H-ABC display many symptoms including abnormal walking, speech defects, impaired swallowing, and several cognitive defects. Abnormalities in several areas of the brain, including the cerebellum and striatum contribute to these defects. . In these structures, the neurons that carry messages around the brain and their supporting cells, known as oligodendrocytes, die, which causes these parts of the brain to gradually waste away. At this time, there are no therapies available to treat H-ABC. Furthermore, research into the disease has been hampered by the lack of a suitable “model” in mice or other laboratory animals. To address this issue, Sase, Almad et al. generated mice carrying a mutation in a gene which codes for the mouse equivalent of the human protein TUBB4A. Experiments showed that the mutant mice had similar physical symptoms to humans with H-ABC, including an abnormal walking gait, poor coordination and involuntary movements such as twitching and reduced reflexes. H-ABC mice had smaller cerebellums than normal mice, which was consistent with the wasting away of the cerebellum observed in individuals with H-ABC. The mice also lost neurons in the striatum and cerebellum, and oligodendrocytes in the brain and spinal cord. Furthermore, the mutant TUBB4A protein affected the behavior and formation of microtubules in H-ABC mice. The findings of Sase, Almad et al. provide the first mouse model that shares many features of H-ABC disease in humans. This model provides a useful tool to study the disease and develop potential new therapies.

Publicações recentes

Ver todas no PubMed

Associações

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Comunidades

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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. 4-aminopyridine improves evoked potentials and ambulation in the taiep rat: A model of hypomyelination with atrophy of basal ganglia and cerebellum.
    PloS one· 2024· PMID 38427650mais citado
  2. Generation of three induced Pluripotent Stem Cell lines from individuals with Hypomyelination with Atrophy of Basal Ganglia and Cerebellum caused by a c.745G&gt;A (p.D249N) autosomal dominant mutation in TUBB4A.
    Stem cell research· 2023· PMID 37003180mais citado
  3. Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (HABC) Due to UFM1 Mutation in Roma Patients - Severe Early Encephalopathy with Stridor and Severe Hearing and Visual Impairment. A Single Center Experience.
    CNS &amp; neurological disorders drug targets· 2023· PMID 35189806mais citado
  4. A new entity of hypomyelination with atrophy of basal ganglia and cerebellum-like syndrome with bilateral developmental cataract.
    Indian journal of ophthalmology· 2022· PMID 35791177mais citado
  5. TUBB4A mutations result in both glial and neuronal degeneration in an H-ABC leukodystrophy mouse model.
    eLife· 2020· PMID 32463361mais citado
  6. TUBB4A-Related Neurologic Disorders.
    · 1993· PMID 27809427recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:139441(Orphanet)
  2. OMIM OMIM:612438(OMIM)
  3. MONDO:0012905(MONDO)
  4. GARD:10917(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q21097782(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

Hipomielinização com atrofia dos gânglios basais e do cerebelo
Compêndio · Raras BR

Hipomielinização com atrofia dos gânglios basais e do cerebelo

ORPHA:139441 · MONDO:0012905
🇧🇷 Brasil SUS
Internações
890/ano
Prevalência BR
1:60000
Custo SUS
R$ 45.670/internação
Dados
DATASUS 2024
Geral
Prevalência
<1 / 1 000 000
Casos
216 casos conhecidos
Herança
Autosomal dominant, Autosomal recessive
CID-10
E75.2 · Outras esfingolipidoses
CID-11
Ensaios
1 ativos
Início
Childhood, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C2676244
EuropePMC
Wikidata
Papers 10a
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