Forma de hipoplasia pontocerebelosa caracterizada por microcefalia, atraso global do desenvolvimento e perturbação do desenvolvimento intelectual grave, características ósseas dismórficas, síndrome cerebelosa e hipoplasia pontocerebelosa na imagem cerebral. São frequentemente observadas alterações comportamentais. Outras manifestações reportadas incluem convulsões, anomalias oculares, infecções respiratórias recorrentes e corpo caloso fino ou ausente, entre outras.
Introdução
O que você precisa saber de cara
Visão geral
A hipoplasia pontocerebelar tipo 11 é uma condição genética ultrarrara, com prevalência estimada em menos de 1 indivíduo a cada 1.000.000. O início dos sinais clínicos ocorre precocemente, com manifestações identificáveis nos períodos antenatal e neonatal. A transmissão se dá por padrão de herança autossômico recessivo.[1][2]
Sinais e sintomas
No neurodesenvolvimento e sistema nervoso, a condição é caracterizada por hipoplasia da ponte, hipoplasia ou agenesia do corpo caloso, hipotonia generalizada, espasticidade, hiporreflexia, convulsões, incoordenação e incapacidade de andar. Alterações comportamentais e cognitivas podem incluir comportamento autista, comportamento autolesivo, maneirismos repetitivos anormais, transtorno do déficit de atenção com hiperatividade, comportamento alegre e contato visual reduzido.[1][2]
Outras manifestações físicas e oftalmológicas incluem atrofia do músculo esquelético, pé plano, baixa estatura e peso corporal diminuído, além de coloboma, estrabismo, esotropia e hipermetropia. Características anatômicas adicionais podem abranger macrotia e atresia anal.[1][2]
Causas genéticas
Diagnóstico
O diagnóstico envolve a identificação das manifestações clínicas e achados estruturais cerebrais, sendo confirmado por avaliação genética molecular voltada para o gene TBC1D23. No contexto de testes genéticos, há 123 testes genéticos descritos e 30 variantes catalogadas no banco de dados ClinVar para esta condição.[1][3][4]
Conteúdo informativo gerado e mantido automaticamente a partir de fontes oficiais (Orphanet, HPO, OMIM, SUS). Não substitui avaliação médica.
A hipoplasia pontocerebelar tipo 11 é uma condição genética rara que afeta o desenvolvimento do cérebro, especialmente do cerebelo e da ponte cerebral. Desde os primeiros meses de vida, as famílias costumam notar dificuldades motoras, músculos rígidos (espasticidade) ou muito frouxos (hipotonia), além de atrasos importantes na fala e no aprendizado. Causada por alterações no gene TBC1D23, a condição tem padrão recessivo e não possui um medicamento curativo no mundo. No Brasil, a doença não conta com um protocolo específico (PCDT), mas o SUS prevê atendimentos de reabilitação e exames diagnósticos voltados a condições raras.
Forma de hipoplasia pontocerebelosa caracterizada por microcefalia, atraso global do desenvolvimento e perturbação do desenvolvimento intelectual grave, características ósseas dismórficas, síndrome cerebelosa e hipoplasia pontocerebelosa na imagem cerebral. São frequentemente observadas alterações comportamentais. Outras manifestações reportadas incluem convulsões, anomalias oculares, infecções respiratórias recorrentes e corpo caloso fino ou ausente, entre outras.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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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
+ 19 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 42 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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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 recessive.
Curadoria gene-doença
fontes oficiaisPontocerebellar hypoplasia 11
A non-degenerative form of pontocerebellar hypoplasia, a disorder characterized by structural defects of the pons and cerebellum, evident upon brain imaging. PCH11 features include severely delayed psychomotor development with intellectual disability and poor speech, microcephaly, dysmorphic features, and pontocerebellar hypoplasia. PCH11 inheritance is autosomal recessive.
Variantes genéticas (ClinVar)
30 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 2.116 variantes classificadas pelo ClinVar.
Diagnóstico
Os sinais que médicos procuram e os exames que confirmam
Tratamento e manejo
Remédios, cuidados de apoio e o que precisa acompanhar
Onde tratar no SUS
Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)
🇧🇷 Atendimento SUS — Hipoplasia pontocerebelar tipo 11
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
Nenhum ensaio clínico registrado para esta condição.
Publicações mais relevantes
Mostrando amostra de 28 publicações de um total de 322
Biallelic Loss-of-Function Variant in MINPP1 Causes Pontocerebellar Hypoplasia with Characteristic Severe Neurodevelopmental Disorder.
Pontocerebellar hypoplasia (PCH) encompasses a group of autosomal recessive neurodegenerative disorders marked by cerebellar and pontine atrophy. Multiple subtypes of PCH have been identified, among which the rare subtype PCH type 16 is caused by MINPP1 genetic variants. MINPPI encodes an enzyme essential for inositol polyphosphate dephosphorylation, regulating calcium and iron homeostasis. We conducted genome sequencing on a proband from the consanguineous family, who presented with a severe neurodegenerative disorder, to identify the underlying cause of disease. A comprehensive clinical assessment in addition to neuroradiological findings are described. We performed the functional validation of the identified variant and conducted untargeted metabolomic analyses. The clinical and radiological assessment of the patient showed a congenital brain anomaly and neurodegenerative symptoms. Further genetic analysis identified a homozygous loss-of-function variant (c.1401del, p.Ser468Valfs10*) in MINPP1, providing molecular confirmation of a clinical PCH diagnosis. While real-time quantitative PCR (RT-qPCR) showed that MINPP1 gene expression was unaffected in the proband, Western blot analysis demonstrated reduced protein abundance, supporting a pathogenic role of the variant. Metabolomic profiling revealed elevated lipid levels and disrupted inositol metabolism, providing further insights into the disease mechanism. These findings establish the pathogenicity of the p.Ser468Valfs10* variant in MINPP1 and highlight inositol metabolism as a potential pathway involved in PCH16, advancing the understanding of the pathophysiology of the disease.
Identification and functional analysis of a novel TBC1D23 pathogenic variant in a Chinese family with pontocerebellar hypoplasia.
Pontocerebellar hypoplasia type 11 (PCH11) is an autosomal recessive disorder caused by variants in TBC1D23. The molecular basis for its clinical heterogeneity remains poorly understood. Here, we identified a novel TBC1D23 variant in a Chinese family, investigated its underlying pathogenic mechanisms, and systematically reviewed the clinical phenotypes of all reported cases of PCH11. We identified a novel homozygous frameshift variant, c.511_512delTT (p.F171Qfs*8), in TBC1D23. The patient exhibited a severe phenotype, including marked pontocerebellar hypoplasia, a thinned corpus callosum, global developmental delay, and severe language and motor impairments. Mechanistic studies in a zebrafish model revealed that the mutant transcript partially escaped nonsense-mediated decay (NMD), with expression levels at approximately 50% of the wild-type. In vitro, the resultant truncated protein showed enhanced stability and aberrant cytoplasmic distribution instead of its normal Golgi localization. Furthermore, its expression significantly inhibited cell proliferation. Our study identifies c.511_512delTT as a novel pathogenic variant in TBC1D23. We propose the severe phenotype stems from a primary loss-of-function (LoF), which is likely exacerbated by the cytotoxic effect of the truncated protein produced via partial NMD escape. Our findings suggest this mutant protein exhibits increased stability. This model provides a novel explanation for the phenotypic heterogeneity in PCH11 and expands the mutational spectrum of this disorder.
The phenotyping dilemma in VRK1-related motor neuron disease: a Turkish family with young-onset amyotrophic lateral sclerosis caused by a novel mutation.
Objective: Vaccinia-related kinase 1 (VRK1)-related disease is an extremely rare autosomal recessive disorder primarily affecting the peripheral and/or central nervous system. In this report, we describe the genetic and clinical features of two siblings from a Turkish family presenting with an amyotrophic lateral sclerosis (ALS) phenotype due to a novel homozygous VRK1 mutation, and discuss the broad phenotypic spectrum associated with pathogenic variants in this gene. Methods: We analyzed the demographic data, clinical histories, neurological examinations, laboratory findings, and genetic results of 53 patients, including our cases, derived from 27 different reports. Results: Whole-exome sequencing identified a novel homozygous missense mutation, c.700A > G (p.Asn234Asp), in the VRK1 gene in two affected siblings. The characteristic features of the ALS phenotype included a recessive inheritance pattern, motor deficits with onset in the lower limbs, pyramidal tract signs, and a muscle magnetic resonance imaging (MRI) pattern demonstrating preferential involvement of the posterior compartments of the leg and thigh. The most common phenotypes associated with VRK1 mutations were ALS (18/53, 34%) and distal hereditary motor neuropathy (dHMN) (14/53, 26.4%), followed by pontocerebellar hypoplasia type 1 (7/53, 13.2%), hereditary motor and sensory neuropathy (5/53, 9.4%), autosomal recessive primary microcephaly with brain malformations (4/53, 7.5%), and spastic paraplegia (2/53, 3.8%). The ALS phenotype exhibited a significantly earlier mean age of onset compared to the dHMN phenotype (p = 0.015; 15.3 ± 11.5 and 27 ± 15.5 years, respectively). Conclusion: Our findings highlight the importance of investigating VRK1 mutations in patients with young-onset familial ALS. Furthermore, this report provides a systematic classification of the phenotype definitions associated with VRK1 mutations.
Emerging variants, unique phenotypes, and transcriptomic signatures: an integrated study of COASY-associated diseases.
COASY, the gene encoding the bifunctional enzyme CoA synthase, which catalyzes the last two reactions of cellular de novo coenzyme A (CoA) biosynthesis, has been linked to two exceedingly rare autosomal recessive disorders, such as COASY protein-associated neurodegeneration (CoPAN), a form of neurodegeneration with brain iron accumulation (NBIA), and pontocerebellar hypoplasia type 12 (PCH12). We aimed to expand the phenotypic spectrum and gain insights into the pathogenesis of COASY-related disorders. Patients were identified through targeted or exome sequencing. To unravel the molecular mechanisms of disease, RNA sequencing, bioenergetic analysis, and quantification of critical proteins were performed on fibroblasts. We identified five new individuals harboring novel COASY variants. While one case exhibited classical CoPAN features, the others displayed atypical symptoms such as deafness, language and autism spectrum disorders, brain atrophy, and microcephaly. All patients experienced epilepsy, highlighting its potential frequency in COASY-related disorders. Fibroblast transcriptomic profiling unveiled dysregulated expression in genes associated with mitochondrial respiration, responses to oxidative stress, transmembrane transport, various cellular signaling pathways, and protein translation, modification, and trafficking. Bioenergetic analysis revealed impaired mitochondrial oxygen consumption in COASY fibroblasts. Despite comparable total CoA levels to control cells, the amounts of mitochondrial 4'-phosphopantetheinylated proteins were significantly reduced in COASY patients. These results not only extend the clinical phenotype associated with COASY variants but also suggest a continuum between CoPAN and PCH12. The intricate interplay of altered cellular processes and signaling pathways provides valuable insights for further research into the pathogenesis of COASY-associated diseases.
No, it is not mutually exclusive! A case report of a girl with two genetic diagnoses: Craniofrontonasal dysplasia and pontocerebellar hypoplasia type 1B.
Multiple genetic disorders can coexist in one patient. When the phenotype is not fully explained with one diagnosis, it is recommended to perform further genetic investigations in search for coexisting second diagnosis. Craniofrontonasal dysplasia (CFND) (MIM: 304110) is an X-linked dominant disorder that shows paradoxically greater severity in heterozygous females than in hemizygous males. It is caused by a pathogenic variant in EFNB1. Pontocerebellar hypoplasia type 1B (PCH1B) (MIM: 614678) is an extremely rare condition with over 100 individuals reported to date. It is caused by biallelic pathogenic variants in EXOSC3. This report presents the case of a girl who was diagnosed prenatally with CFND based on the findings on the prenatal imaging and the known diagnosis of CFND in her mother. She has severe global development delay that cannot be explained solely by the CFND diagnosis. Around the age of 2 years, she was diagnosed with PCH1B following whole exome sequencing (WES) testing. The objective of this study is to highlight the importance of pursuing genetic investigation if the available genetic diagnosis cannot fully explain the clinical picture. This is a case report of one patient and review of the literature. Informed consent was obtained from the parents. WES was performed by a private lab using next-generation sequencing (NGS), DNA was sequenced on the NovaSeq 6000 using 2 × 150 bp paired-end read. WES identified the following: homozygous pathogenic variant in EXOSC3: C.395A>C, p.ASp132Ala, maternally inherited, likely pathogenic duplication at Xq13.1 (includes EFNB1) and paternally inherited 16p11.2 duplication that is classified as a variant of uncertain significance. Perusing more extensive genetic testing like: WES is indicated if the current genetic diagnosis cannot fully explain the phenotype in a patient.
Publicações recentes
Pontocerebellar Hypoplasia Type 11 Case with a Novel Variant of TBC1D23 Gene: Case Report and Literature Review.
Diagnostic Clues and Pitfalls in Pontocerebellar Hypoplasia Type 2A.
46,XY differences of sex development in pontocerebellar hypoplasia type 7 (PCH7): two case reports and systematic review.
Genetic and clinical insights into pontocerebellar hypoplasia: Identification of novel variants in an Iranian cohort.
Connectome-seq: high-throughput mapping of neuronal connectivity at single-synapse resolution via barcode sequencing.
📚 EuropePMC251 artigos no totalmostrando 28
Identification and functional analysis of a novel TBC1D23 pathogenic variant in a Chinese family with pontocerebellar hypoplasia.
Human genomicsBiallelic Loss-of-Function Variant in MINPP1 Causes Pontocerebellar Hypoplasia with Characteristic Severe Neurodevelopmental Disorder.
International journal of molecular sciencesThe phenotyping dilemma in VRK1-related motor neuron disease: a Turkish family with young-onset amyotrophic lateral sclerosis caused by a novel mutation.
Amyotrophic lateral sclerosis & frontotemporal degenerationEmerging variants, unique phenotypes, and transcriptomic signatures: an integrated study of COASY-associated diseases.
Annals of clinical and translational neurologyNo, it is not mutually exclusive! A case report of a girl with two genetic diagnoses: Craniofrontonasal dysplasia and pontocerebellar hypoplasia type 1B.
Clinical case reportsAnalysis of the Clinical Features and Imaging Findings of Pontocerebellar Hypoplasia Type 2D Caused by Mutations in SEPSECS Gene.
Cerebellum (London, England)Clinical, radiological, and genetic variation in pontocerebellar hypoplasia disorder and our clinical experience.
Italian journal of pediatricsA Rare Case of Pontocerebellar Hypoplasia Type 1B With Literature Review.
CureusPontocerebellar Hypoplasia Type 1D: A Case Report and Comprehensive Literature Review.
Journal of clinical medicineAtypical hemolytic uremic syndrome induced by SARS-CoV2 infection in infants with EXOSC3 mutation.
Pediatric nephrology (Berlin, Germany)[Autosomal recessive heterocygote mutation of the RARS2 gene in a colombian patient with non- consanguineous parents].
Archivos argentinos de pediatriaNovel compound heterozygous variant of TOE1 results in a mild type of pontocerebellar hypoplasia type 7: an expansion of the clinical phenotype.
NeurogeneticsMINPP1 prevents intracellular accumulation of the chelator inositol hexakisphosphate and is mutated in Pontocerebellar Hypoplasia.
Nature communications[Early onset epileptic encephalopathy caused by mitochondrial arginyl-tRNA synthetase gene deficiency: report of two cases and literature review].
Zhonghua er ke za zhi = Chinese journal of pediatricsRetrospective Diagnosis of Pontocerebellar Hypoplasia Type 1B in a Family with Two Deceased Newborn Children.
Journal of pediatric geneticsSevere intellectual disability, absence of language, epilepsy, microcephaly and progressive cerebellar atrophy related to the recurrent de novo variant p.(P139L) of the CAMK2B gene: A case report and brief review.
American journal of medical genetics. Part APontocerebellar hypoplasia type 11: Does the genetic defect determine timing of cerebellar pathology?
European journal of medical genetics[Clinical and genetic characteristics of 62 children with mitochondrial epilepsy].
Zhonghua er ke za zhi = Chinese journal of pediatricsTargeting ferroptosis: A novel therapeutic strategy for the treatment of mitochondrial disease-related epilepsy.
PloS oneConsequences of mutations and inborn errors of selenoprotein biosynthesis and functions.
Free radical biology & medicineIdentification of Genetic Disorders Causing Disruption of Selenoprotein Biosynthesis.
Methods in molecular biology (Clifton, N.J.)Novel homozygous RARS2 mutation in two siblings without pontocerebellar hypoplasia - further expansion of the phenotypic spectrum.
Orphanet journal of rare diseasesLoss of function of SLC25A46 causes lethal congenital pontocerebellar hypoplasia.
Brain : a journal of neurologyBrain morphometry in Pontocerebellar Hypoplasia type 2.
Orphanet journal of rare diseasesMilder progressive cerebellar atrophy caused by biallelic SEPSECS mutations.
Journal of human geneticsNeuropathologic Characterization of Pontocerebellar Hypoplasia Type 6 Associated With Cardiomyopathy and Hydrops Fetalis and Severe Multisystem Respiratory Chain Deficiency due to Novel RARS2 Mutations.
Journal of neuropathology and experimental neurologyA novel mutation in the promoter of RARS2 causes pontocerebellar hypoplasia in two siblings.
Journal of human geneticsTargeted carrier screening for four recessive disorders: high detection rate within a founder population.
European journal of medical geneticsAssociações
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Doença com base genética
Um médico geneticista pode ajudar no diagnóstico de Hipoplasia pontocerebelar tipo 11 e no aconselhamento genético da família.
Doenças relacionadas
Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico
Perguntas frequentes
O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu
A condição é causada por variantes no gene TBC1D23. Seu padrão de herança é autossômico recessivo, necessitando de uma alteração herdada de cada um dos genitores.
Referências
Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete
5 fontes citadas no texto · 10 publicações do grafo RarasNet (PubMed) · 5 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.
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.
Citar este verbete
Raras. (2026). Hipoplasia pontocerebelar tipo 11. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/hipoplasia-pontocerebelar-tipo-11
Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.
Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar
Hipoplasia pontocerebelar tipo 11
📋 Origem dos dados
Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.
- Doença rara (ontologia)
- fonte: Orphanet
- Identificador unificado
- fonte: MONDO
- Genética mendeliana
- fonte: OMIM
- Codificação WHO/SUS
- fonte: WHO ICD-10 / DATASUS
- CID-11 (futuro)
- fonte: WHO ICD-11
- NIH/GARD
- fonte: GARD (NIH)
- Dado público estruturado
- fonte: Wikidata