Doença de armazenamento lisossômico caracterizada por características faciais grosseiras, “mancha vermelha cereja” macular e disostose múltipla. A apresentação clínica pode ser heterogênea, variando desde uma forma infantil grave, de início precoce e rapidamente progressiva, até uma forma juvenil/adulta de início tardio e lentamente progressiva.
Introdução
O que você precisa saber de cara
Doença de armazenamento lisossômico caracterizada por características faciais grosseiras, “mancha vermelha cereja” macular e disostose múltipla. A apresentação clínica pode ser heterogênea, variando desde uma forma infantil grave, de início precoce e rapidamente progressiva, até uma forma juvenil/adulta de início tardio e lentamente progressiva.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 6 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 19 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.
Protective protein appears to be essential for both the activity of beta-galactosidase and neuraminidase, it associates with these enzymes and exerts a protective function necessary for their stability and activity. This protein is also a carboxypeptidase and can deamidate tachykinins
Lysosome
Galactosialidosis
A lysosomal storage disease associated with a combined deficiency of beta-galactosidase and neuraminidase, secondary to a defect in cathepsin A. All patients have clinical manifestations typical of a lysosomal disorder, such as coarse facies, cherry red spots, vertebral changes, foam cells in the bone marrow, and vacuolated lymphocytes. Three phenotypic subtypes are recognized. The early infantile form is associated with fetal hydrops, edema, ascites, visceromegaly, skeletal dysplasia, and early death. The late infantile type is characterized by hepatosplenomegaly, growth retardation, cardiac involvement, and a normal or mildly affected mental state. The juvenile/adult form is characterized by myoclonus, ataxia, angiokeratoma, intellectual disability, neurologic deterioration, absence of visceromegaly, and long survival.
Variantes genéticas (ClinVar)
112 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 10 variantes classificadas pelo ClinVar.
Vias biológicas (Reactome)
5 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 — Galactosialidose
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
Ensaios em destaque
Pesquisa e ensaios clínicos
5 ensaios clínicos encontrados.
Publicações mais relevantes
Phenotypic Divergence in Siblings with the Same Genotype: Diffuse Dermal Melanocytosis in Infantile-Onset Galactosialidosis.
Galactosialidosis (GS) is an ultra-rare autosomal recessive lysosomal storage disorder caused by pathogenic variants in the CTSA gene. The resulting deficiency of protective protein/cathepsin A leads to reduced β-galactosidase and α-neuraminidase activity, causing multisystem involvement. While typical features include dysmorphic facies, organomegaly, skeletal dysplasia, and neurological impairment, dermatologic manifestations remain poorly characterized. We report a 9-month-old girl presenting with hepatosplenomegaly and diffuse dermal melanocytosis. Her history included nonimmune hydrops fetalis, congenital cataract, developmental delay, and recurrent respiratory infections. Clinical and radiological evaluation revealed coarse facial features, dysostosis multiplex, and periventricular white matter changes. Enzyme assay demonstrated markedly reduced β-galactosidase activity. Genetic testing identified a homozygous CTSA c.359T>C (p.Ile120Thr) variant, classified as likely pathogenic. Family screening revealed her 10-year-old brother carried the same variant in homozygosity. He exhibited milder features, including developmental delay, hearing loss, and skeletal abnormalities without cutaneous involvement or organomegaly. Enzymatic deficiency was confirmed in both siblings. This report highlights diffuse dermal melanocytosis as a possible novel cutaneous marker of GS, potentially aiding early recognition. It also illustrates intrafamilial phenotypic variability despite identical genotypes. Our findings underscore the importance of dermatologic clues in the diagnostic workup of lysosomal storage disorders and advocate for family-based genetic screening to identify asymptomatic or mildly affected individuals.
Juvenile/adult-type galactosialidosis with a homozygous CTSA variant without consanguinity.
Here we report a Japanese patient with juvenile/adult-type galactosialidosis carrying a homozygous c.692+3A>G CTSA variant. Comprehensive genetic analyses including exome sequencing, chromosomal microarray and homozygosity mapping supported biallelic inheritance of this variant and suggested a founder effect in the Japanese population. Clinically, the patient exhibited typical features of the juvenile/adult-type galactosialidosis, with growth impairment noted during adolescence as a less conspicuous but relevant observation.
Novel CTSA Variant Identified in a Thai Family With Late-Infantile Galactosialidosis.
Galactosialidosis (GS) is a rare lysosomal storage disease (LSD) with variable onset caused by a defect in protective protein/cathepsin A (PPCA) encoded by the CTSA gene. The late-infantile onset is characterized by developmental delay, visceromegaly, coarse facies, and cherry-red macula. We report cases of late-infantile GS in a Thai-Lahu family, with affected members initially presenting with recurrent infections due to T-cell defects. The clinical features of LSD and cherry-red macula led us to perform lysosomal enzyme assays, which showed undetectable activity of PPCA. A novel homozygous missense CTSA variant (NM_000308.4): c.1307A > G (p.Gln436Arg) was identified in affected individuals. In vitro functional analysis suggested that the variant may impair the dimerization process of PPCA, potentially disrupting proper protein maturation or function and leading to significantly reduced PPCA activity. Exome sequencing did not reveal any variants in other genes associated with primary immunodeficiencies. To date, our cases represent the first reported patients with GS and T-cell defects. Our study broadened the clinical and genotype spectrum of this rare disease.
Galactosialidosis: A Report of Three Cases Diagnosed With a Founder Genetic Mutation in the Bahraini Population.
Galactosialidosis (GS, OMIM #256540) is a rare metabolic disorder resulting from mutations in the protective protein/cathepsin A (PPCA) or CTSA gene, which is characterized by malfunction of the lysosomal glycoprotein degradation and subsequent intra-lysosomal accumulation of sialyloligosaccharides and glycopeptides. It follows an autosomal recessive inheritance pattern. This systemic disease is characterized by typical clinical features such as short stature, coarse facial features, vertebral deformities, gastrointestinal manifestations, particularly hepatosplenomegaly, cardiac abnormalities, hearing loss, and macular cherry-red spots. GS is classified into three subtypes based on the age of onset and presenting symptoms. The three types include the early infantile (EI) form, which is the most severe; the late infantile form; and the juvenile/adult form. Here, we present three newly diagnosed cases of late-infantile GS in Bahraini patients, all sharing the same previously reported homozygous mutation in the CTSA gene (c.607C>A, p.Pro203Thr), confirmed by targeted mutation analysis. This mutation has been identified in nine Bahraini patients, reflecting a founder effect in the Bahraini population. All three patients presented with coarse facial features, short stature, and poor vision, alongside skeletal deformities. Patient 1 had significant bilateral hip osteoarthritis, while Patient 2. showed lumbar lordosis and extensive bilateral hip avascular necrosis. Patient 3 presented with thoracolumbar levoscoliosis and kyphoscoliosis. Additionally, in Patient 1 and Patient 2 cardiac manifestations were noted, including valvular heart disease. Patient 3 had mild left ventricular hypertrophy (LVH), aortic regurgitation, and mitral regurgitation, along with diffuse angiokeratomas. All patients are currently receiving supportive care and management. This case report highlights the importance of early diagnosis and multidisciplinary care of patients with GS.
Galactosialidosis presenting as non-immune hydrops.
Hydrops fetalis is an abnormal accumulation of fluid in two or more foetal compartments which is easily detected using prenatal ultrasonography. It can be categorised into immune and non-immune. The non-immune hydrops can result from various aetiologies, including cardiovascular, respiratory, genitourinary infections, chromosomal anomalies and metabolic causes. The metabolic causes, including lysosomal storage disorders (LSD), are increasingly being recognised as the causes of non-immune hydrops. The hydrops fetalis associated with metabolic disorders is usually severe with huge ascites, hepatosplenomegaly, thick skin, renal abnormalities, increased nuchal translucency, renal abnormalities and skeletal deformities. In this report, we describe a case of LSD, that is, galactosialidosis presenting as non-immune hydrops and its diagnosis. In utero diagnosis of the disorder without an index case is challenging. The definitive diagnosis is important for planning and management of future conceptions.
Publicações recentes
Lysosomal Neuraminidase 1 (NEU1): Its Unique Molecular Characters and Therapeutic Approaches for Deficiencies.
Phenotypic Divergence in Siblings with the Same Genotype: Diffuse Dermal Melanocytosis in Infantile-Onset Galactosialidosis.
Juvenile/adult-type galactosialidosis with a homozygous CTSA variant without consanguinity.
Novel CTSA Variant Identified in a Thai Family With Late-Infantile Galactosialidosis.
Galactosialidosis: A Report of Three Cases Diagnosed With a Founder Genetic Mutation in the Bahraini Population.
📚 EuropePMC129 artigos no totalmostrando 54
Phenotypic Divergence in Siblings with the Same Genotype: Diffuse Dermal Melanocytosis in Infantile-Onset Galactosialidosis.
Molecular syndromologyJuvenile/adult-type galactosialidosis with a homozygous CTSA variant without consanguinity.
Human genome variationNovel CTSA Variant Identified in a Thai Family With Late-Infantile Galactosialidosis.
Annals of human geneticsGalactosialidosis: A Report of Three Cases Diagnosed With a Founder Genetic Mutation in the Bahraini Population.
CureusGalactosialidosis presenting as non-immune hydrops.
BMJ case reportsNeuraminidase-1 (NEU1): Biological Roles and Therapeutic Relevance in Human Disease.
Current issues in molecular biologyLysosomal sialidase NEU1, its intracellular properties, deficiency, and use as a therapeutic agent.
Glycoconjugate journalThe development of a broad-spectrum retaining β-exo-galactosidase activity-based probe.
Organic & biomolecular chemistryStructure of the immunoregulatory sialidase NEU1.
Science advancesAnalysis of urinary oligosaccharide excretion patterns by UHPLC/HRAM mass spectrometry for screening of lysosomal storage disorders.
Journal of inherited metabolic diseaseClinical spectrum and outcome of nine patients with a novel genetic variant of galactosialidosis in the Kingdom of Bahrain.
JIMD reportsReversal of neuroinflammation in novel GS model mice by single i.c.v. administration of CHO-derived rhCTSA precursor protein.
Molecular therapy. Methods & clinical developmentThe rare reason of pain in hip girdle: Mucolipidosis type 3 gamma.
The Turkish journal of pediatricsAAV-mediated gene therapy for galactosialidosis: A long-term safety and efficacy study.
Molecular therapy. Methods & clinical developmentInflammatory arthritis complicating galactosialidosis: a case report.
BMC rheumatologyInfantile Galactosialidosis with Novel Mutation: An Early Presentation.
Journal of pediatric geneticsLysosomal storage disorders as an etiology of nonimmune hydrops fetalis: A systematic review.
Clinical geneticsStructure of the murine lysosomal multienzyme complex core.
Science advancesGalactosialidosis: preclinical enzyme replacement therapy in a mouse model of the disease, a proof of concept.
Molecular therapy. Methods & clinical developmentGastrointestinal stromal tumor in perforated Meckel's diverticulum: a case report and literature review.
Surgical case reportsGalactosialidosis Type IIb with Bilateral Macular Cherry-Red Spots but Mild Dysfunction.
Case reports in ophthalmologyA sialidosis type I cohort and a quantitative approach to multimodal ophthalmic imaging of the macular cherry-red spot.
The British journal of ophthalmologyPlacental Findings in Lysosomal Storage Disease Diagnosis: A Case Report of Galactosialidosis.
Case reports in pathologyThe Role of Hematopoietic Cell Transplant in the Glycoprotein Diseases.
CellsPropionic acidemia: an extremely rare cause of hemophagocytic lymphohistiocytosis in an infant.
Archivos argentinos de pediatriaLoss of kidney function due to proteinuria, common problem with a rare cause: Answer.
Pediatric nephrology (Berlin, Germany)Lysosomal storage disease spectrum in nonimmune hydrops fetalis: a retrospective case control study.
Prenatal diagnosisPre-diagnosing and managing patients with GM1 gangliosidosis and related disorders by the evaluation of GM1 ganglioside content.
Scientific reportsA new heterozygous compound mutation in the CTSA gene in galactosialidosis.
Human genome variationQuantitative natural history characterization in a cohort of 142 published cases of patients with galactosialidosis-A cross-sectional study.
Journal of inherited metabolic diseaseClinical implementation of gene panel testing for lysosomal storage diseases.
Molecular genetics & genomic medicineUPLC-MS/MS Analysis of Urinary Free Oligosaccharides for Lysosomal Storage Diseases: Diagnosis and Potential Treatment Monitoring.
Clinical chemistryUse of modified U1 small nuclear RNA for rescue from exon 7 skipping caused by 5'-splice site mutation of human cathepsin A gene.
GeneNew CTSA mutation in early infantile galactosialidosis.
Pediatrics international : official journal of the Japan Pediatric Society[Development of Enzyme Drugs Derived from Transgenic Silkworms to Treat Lysosomal Diseases].
Yakugaku zasshi : Journal of the Pharmaceutical Society of JapanGalactosialidosis in a Newborn with a Novel Mutation in the CTSA Gene Presenting with Transient Hyperparathyroidism.
Balkan journal of medical genetics : BJMGDental Management of a Young Child Affected by Galactosialidosis and a Gigantic Abdominal Growth.
Case reports in dentistryTurning the backbone into an ankylosed concrete-like structure: Case report.
MedicineSecondary Hemophagocytic Syndrome Associated with COG6 Gene Defect: Report and Review.
JIMD reports[Galactosialidosis: a new "de novo" mutation in CTSA gene in a patient with late infantile galactosialidosis].
Archivos argentinos de pediatriaInborn errors of metabolism in a cohort of pregnancies with non-immune hydrops fetalis: a single center experience.
Journal of perinatal medicineLC-MS/MS multiplex analysis of lysosphingolipids in plasma and amniotic fluid: A novel tool for the screening of sphingolipidoses and Niemann-Pick type C disease.
PloS oneGalactosialidosis: historic aspects and overview of investigated and emerging treatment options.
Expert opinion on orphan drugsA Turkish case of galactosialidosis with a new homozygous mutation in CTSA gene.
Metabolic brain diseaseDevelopment of a new tandem mass spectrometry method for urine and amniotic fluid screening of oligosaccharidoses.
Rapid communications in mass spectrometry : RCMMice with Catalytically Inactive Cathepsin A Display Neurobehavioral Alterations.
Behavioural neurologyMultigene panel next generation sequencing in a patient with cherry red macular spot: Identification of two novel mutations in NEU1 gene causing sialidosis type I associated with mild to unspecific biochemical and enzymatic findings.
Molecular genetics and metabolism reportsInherited diseases caused by mutations in cathepsin protease genes.
The FEBS journalCathepsin A-related arteriopathy with strokes and leukoencephalopathy (CARASAL).
NeurologyAn Unusual Case of LCHAD Deficiency Presenting With a Clinical Picture of Hemophagocytic Lymphohistiocytosis: Secondary HLH or Coincidence?
Journal of pediatric hematology/oncologyMeasurement of Elevated Concentrations of Urine Keratan Sulfate by UPLC-MSMS in Lysosomal Storage Disorders (LSDs): Comparison of Urine Keratan Sulfate Levels in MPS IVA Versus Other LSDs.
JIMD reportsLysosomal localization of Japanese medaka (Oryzias latipes) Neu1 sialidase and its highly conserved enzymatic profiles with human.
GeneChemical chaperone treatment for galactosialidosis: Effect of NOEV on β-galactosidase activities in fibroblasts.
Brain & developmentPathogenesis, Emerging therapeutic targets and Treatment in Sialidosis.
Expert opinion on orphan drugsAssociações
Organizações que acompanham esta doença — pra ter apoio e orientação
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Comunidades
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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.
- Phenotypic Divergence in Siblings with the Same Genotype: Diffuse Dermal Melanocytosis in Infantile-Onset Galactosialidosis.
- Juvenile/adult-type galactosialidosis with a homozygous CTSA variant without consanguinity.
- Novel CTSA Variant Identified in a Thai Family With Late-Infantile Galactosialidosis.
- Galactosialidosis: A Report of Three Cases Diagnosed With a Founder Genetic Mutation in the Bahraini Population.
- Galactosialidosis presenting as non-immune hydrops.
- Lysosomal Neuraminidase 1 (NEU1): Its Unique Molecular Characters and Therapeutic Approaches for Deficiencies.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:351(Orphanet)
- OMIM OMIM:256540(OMIM)
- MONDO:0009737(MONDO)
- GARD:3953(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q1491661(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
