DDOST-CDG é uma doença genética que faz com que o corpo tenha problemas na forma como "cola" certas moléculas de açúcar em outras estruturas, o que é fundamental para o bom funcionamento das células e órgãos. Os sintomas incluem dificuldade para ganhar peso e crescer, atraso no desenvolvimento, fraqueza muscular, estrabismo e problemas no fígado. A doença é causada por alterações (mutações) no gene DDOST (1p36.1).
Introdução
O que você precisa saber de cara
DDOST-CDG é uma doença genética que faz com que o corpo tenha problemas na forma como "cola" certas moléculas de açúcar em outras estruturas, o que é fundamental para o bom funcionamento das células e órgãos. Os sintomas incluem dificuldade para ganhar peso e crescer, atraso no desenvolvimento, fraqueza muscular, estrabismo e problemas no fígado. A doença é causada por alterações (mutações) no gene DDOST (1p36.1).
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Entender a doença
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 8 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 31 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.
Subunit of the oligosaccharyl transferase (OST) complex that catalyzes the initial transfer of a defined glycan (Glc(3)Man(9)GlcNAc(2) in eukaryotes) from the lipid carrier dolichol-pyrophosphate to an asparagine residue within an Asn-X-Ser/Thr consensus motif in nascent polypeptide chains, the first step in protein N-glycosylation (PubMed:31831667). N-glycosylation occurs cotranslationally and the complex associates with the Sec61 complex at the channel-forming translocon complex that mediates
Endoplasmic reticulum membrane
Congenital disorder of glycosylation 1R
A form of congenital disorder of glycosylation, a multisystem disorder caused by a defect in glycoprotein biosynthesis and characterized by under-glycosylated serum glycoproteins. Congenital disorders of glycosylation result in a wide variety of clinical features, such as defects in the nervous system development, psychomotor retardation, dysmorphic features, hypotonia, coagulation disorders, and immunodeficiency. The broad spectrum of features reflects the critical role of N-glycoproteins during embryonic development, differentiation, and maintenance of cell functions.
Variantes genéticas (ClinVar)
27 variantes patogênicas registradas no ClinVar.
Vias biológicas (Reactome)
8 vias biológicas associadas aos genes desta condição.
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 — Síndrome CDG, tipo IR
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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
DDOST-Congenital Disorder of Glycosylation: Defining the Clinical Spectrum and First Report of a Structural Variant.
Congenital disorders of glycosylation (CDG) are a heterogeneous group of metabolic diseases caused by defects in glycan biosynthesis, predominantly affecting the N-glycosylation pathway. Pathogenic variants in the DDOST gene, encoding a non-catalytic subunit of the oligosaccharyltransferase (OST) complex, underlie an ultra-rare CDG subtype with only three patients reported to date, complicating diagnosis and genotype-phenotype correlations. We describe a female patient with developmental delay, hypotonia, and dysmorphic features. Genetic analyses included chromosomal microarray, FMR1 testing, and trio-based next-generation sequencing with a neurodevelopmental disorder panel. Variants were assessed using ACMG criteria, population databases, segregation, and in silico analysis. We also reviewed published DDOST-CDG cases to compare clinical and molecular findings. Compound heterozygous DDOST variants were identified: (i) a maternally inherited 413-kb deletion encompassing exons 3-11, predicted to abolish gene function, and (ii) a paternally inherited in-frame deletion (p.Lys435del), removing a highly conserved residue in the luminal C-terminal domain. Both were absent from population databases and classified as pathogenic or likely pathogenic, consistent with autosomal recessive inheritance. Metabolic testing confirmed a type I transferrin isoform pattern, supporting a congenital disorder of glycosylation. This report expands the genetic and phenotypic spectrum of DDOST-CDG by describing the first structural variant. Review of published cases highlights hypotonia and motor delay as consistent features, while other traits such as strabismus, feeding difficulties, or hepatic dysfunction appear variable. Our findings underscore the clinical heterogeneity of DDOST-CDG and the complementary role of metabolic and genomic testing.
Progress in research on DDOST dysregulation in related diseases.
DDOST is an important subunit of N-glycosylated oligosaccharyltransferase and is closely related to protein N-glycosylation. Some studies have reported that abnormal expression of DDOST is associated with congenital disorders of glycosylation, solid tumours and other diseases. To better understand the progress of research on DDOST in diseases, we herein provide a comprehensive review of the basic functions of DDOST, interactions molecules, DDOST-congenital disorders of glycosylation (DDOST-CDG) and solid tumours. Our review findings will lay a foundation for researchers to better understand the functions of DDOST and to investigate its specific mechanisms of action.
DDOST-CDG: Clinical and molecular characterization of a third patient with a milder and a predominantly movement disorder phenotype.
Congenital disorders of glycosylation (CDG) are a group of heterogeneous inherited metabolic disorders affecting posttranslational protein modification. DDOST-CDG, caused by biallelic pathogenic variants in DDOST which encodes dolichyl-diphospho-oligosaccharide-protein glycosyltransferase, a subunit of N-glycosylation oligosaccharyltransferase (OST) complex, is an ultra-rare condition that has been described in two patients only. The main clinical features in the two reported patients include profound developmental delay, failure to thrive, and hypotonia. In addition, both patients had abnormal transferrin glycosylation. Here, we report an 18-year-old male who presented with moderate developmental delay, progressive opsoclonus, myoclonus, ataxia, tremor, and dystonia. Biochemical studies by carbohydrate deficient transferrin analysis showed a type I CDG pattern. Exome sequencing identified compound heterozygous variants in DDOST: a maternally inherited variant, c.1142dupT (p.Leu381Phefs*11), and a paternally inherited variant, c.661 T > C (p.Ser221Pro). Plasma N-glycan profiling showed mildly increased small high mannose glycans including Man0-5 GlcNAc2, a pattern consistent with what was previously reported in DDOST-CDG or defects in other subunits of OST complex. Western blot analysis on patient's fibroblasts revealed decreased expression of DDOST and reduced intracellular N-glycosylation, as evident by the biomarkers ICAM-1 and LAMP2. Our study highlights the clinical variability, expands the clinical and biochemical phenotypes, and describes new genotype, which all are essential for diagnosing and managing patients with DDOST-CDG.
The second DDOST-CDG patient with lactose intolerance, developmental delay, and situs inversus totalis.
Congenital disorders of glycosylation (CDGs) are inherited metabolic diseases affecting protein and lipid glycosylation. DDOST-CDG is a rare, newly identified type of CDGs, with only one case reported so far. In this study, we report a Chinese patient with a homozygous pathogenic variant in DDOST (c.1187G>A) and who presented with feeding difficulty, lactose intolerance, facial dysmorphism, failure to thrive, strabismus, high myopia, astigmatism, hypotonia, developmental delay and situs inversus totalis. Serum transferrin isoelectrofocusing demonstrated defective glycosylation in our patient. This finding further identifies DDOST as a genetic cause of CDGs and expands the clinical phenotype of DDOST-CDG.
Publicações recentes
DDOST-Congenital Disorder of Glycosylation: Defining the Clinical Spectrum and First Report of a Structural Variant.
Progress in research on DDOST dysregulation in related diseases.
DDOST-CDG: Clinical and molecular characterization of a third patient with a milder and a predominantly movement disorder phenotype.
The second DDOST-CDG patient with lactose intolerance, developmental delay, and situs inversus totalis.
📚 EuropePMC2 artigos no totalmostrando 4
DDOST-Congenital Disorder of Glycosylation: Defining the Clinical Spectrum and First Report of a Structural Variant.
American journal of medical genetics. Part AProgress in research on DDOST dysregulation in related diseases.
Glycoconjugate journalDDOST-CDG: Clinical and molecular characterization of a third patient with a milder and a predominantly movement disorder phenotype.
Journal of inherited metabolic diseaseThe second DDOST-CDG patient with lactose intolerance, developmental delay, and situs inversus totalis.
Journal of human geneticsAssociações
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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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.
- DDOST-Congenital Disorder of Glycosylation: Defining the Clinical Spectrum and First Report of a Structural Variant.
- Progress in research on DDOST dysregulation in related diseases.
- DDOST-CDG: Clinical and molecular characterization of a third patient with a milder and a predominantly movement disorder phenotype.
- The second DDOST-CDG patient with lactose intolerance, developmental delay, and situs inversus totalis.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:300536(Orphanet)
- OMIM OMIM:614507(OMIM)
- MONDO:0013789(MONDO)
- GARD:12398(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q66299848(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