Raras
Buscar doenças, sintomas, genes...
Deficiência de esfingomielinase ácida neurovisceral da infância
ORPHA:77292CID-10 · E75.2CID-11 · 5C56.0YOMIM 257200DOENÇA RARA

A doença de Niemann-Pick tipo A é um tipo muito grave da doença de Niemann-Pick. É uma doença genética rara, passada de pais para filhos, que afeta os lisossomos (pequenas estruturas dentro das células). Os sintomas geralmente surgem em bebês ou crianças pequenas e incluem dificuldade para crescer e ganhar peso, aumento do fígado e do baço, e problemas neurológicos que pioram rapidamente.

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Introdução

O que você precisa saber de cara

📋

A doença de Niemann-Pick tipo A é um tipo muito grave da doença de Niemann-Pick. É uma doença genética rara, passada de pais para filhos, que afeta os lisossomos (pequenas estruturas dentro das células). Os sintomas geralmente surgem em bebês ou crianças pequenas e incluem dificuldade para crescer e ganhar peso, aumento do fígado e do baço, e problemas neurológicos que pioram rapidamente.

Publicações científicas
1.340 artigos
Último publicado: 2026 May

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
Europe
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 20%
1 medicamentos CEAFCID-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

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Sinais e sintomas

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

Partes do corpo afetadas

🧠
Neurológico
6 sintomas
🫃
Digestivo
5 sintomas
🦴
Ossos e articulações
3 sintomas
📏
Crescimento
2 sintomas
🩸
Sangue
2 sintomas
💪
Músculos
2 sintomas

+ 18 sintomas em outras categorias

Características mais comuns

100%prev.
Regressão do desenvolvimento
Frequência: 10/10
100%prev.
Mancha vermelho-cereja da mácula
Frequência: 10/10
100%prev.
Concentração elevada de aspartato aminotransferase circulante
Frequência: 10/10
100%prev.
Irritabilidade
Frequência: 10/10
100%prev.
Dificuldades alimentares na infância
Frequência: 10/10
100%prev.
Déficit de crescimento
Frequência: 10/10
39sintomas
Muito frequente (13)
Ocasional (3)
Sem dados (23)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 39 características clínicas mais associadas, ordenadas por frequência.

Regressão do desenvolvimentoDevelopmental regression
Frequência: 10/10100%
Mancha vermelho-cereja da máculaCherry red spot of the macula
Frequência: 10/10100%
Concentração elevada de aspartato aminotransferase circulanteElevated circulating aspartate aminotransferase concentration
Frequência: 10/10100%
IrritabilidadeIrritability
Frequência: 10/10100%
Dificuldades alimentares na infânciaFeeding difficulties in infancy
Frequência: 10/10100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico1.340PubMed
Últimos 10 anos109publicações
Pico202320 papers
Linha do tempo
2026Hoje · 2026📈 2023Ano 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 recessive.

SMPD1Sphingomyelin phosphodiesteraseDisease-causing germline mutation(s) (loss of function) inTolerante
FUNÇÃO

Converts sphingomyelin to ceramide (PubMed:12563314, PubMed:1840600, PubMed:18815062, PubMed:25339683, PubMed:25920558, PubMed:27659707, PubMed:33163980). Exists as two enzymatic forms that arise from alternative trafficking of a single protein precursor, one that is targeted to the endolysosomal compartment, whereas the other is released extracellularly (PubMed:20807762, PubMed:21098024, PubMed:9660788). However, in response to various forms of stress, lysosomal exocytosis may represent a major

LOCALIZAÇÃO

LysosomeLipid dropletSecretedSecreted, extracellular space

VIAS BIOLÓGICAS (1)
Glycosphingolipid catabolism
MECANISMO DE DOENÇA

Niemann-Pick disease A

An early-onset lysosomal storage disorder caused by failure to hydrolyze sphingomyelin to ceramide. It results in the accumulation of sphingomyelin and other metabolically related lipids in reticuloendothelial and other cell types throughout the body, leading to cell death. Niemann-Pick disease type A is a primarily neurodegenerative disorder characterized by onset within the first year of life, intellectual disability, digestive disorders, failure to thrive, major hepatosplenomegaly, and severe neurologic symptoms. The severe neurological disorders and pulmonary infections lead to an early death, often around the age of four. Clinical features are variable. A phenotypic continuum exists between type A (basic neurovisceral) and type B (purely visceral) forms of Niemann-Pick disease, and the intermediate types encompass a cluster of variants combining clinical features of both types A and B.

EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
79.4 TPM
Tireoide
67.2 TPM
Pituitária
65.9 TPM
Aorta
63.0 TPM
Cerebelo
61.4 TPM
OUTRAS DOENÇAS (2)
Niemann-Pick disease type BNiemann-Pick disease type A
HGNC:11120UniProt:P17405

Variantes genéticas (ClinVar)

486 variantes patogênicas registradas no ClinVar.

🧬 SMPD1: NM_000543.5(SMPD1):c.1604G>T (p.Trp535Leu) ()
🧬 SMPD1: NM_000543.5(SMPD1):c.415C>T (p.Leu139Phe) ()
🧬 SMPD1: NM_000543.5(SMPD1):c.1712C>A (p.Thr571Asn) ()
🧬 SMPD1: NM_000543.5(SMPD1):c.395T>C (p.Val132Ala) ()
🧬 SMPD1: NM_000543.5(SMPD1):c.1302del (p.Lys435fs) ()
Ver todas no ClinVar

Vias biológicas (Reactome)

1 via biológica associada aos genes desta condição.

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.
3Fase 33
2Fase 21
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 5 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Deficiência de esfingomielinase ácida neurovisceral da infância

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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

4 pesquisas recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

0 ensaios clínicos encontrados.

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

Timeline de publicações
729 papers (10 anos)

Mostrando amostra de 109 publicações de um total de 729

#1

Pathogenic Variants and Olipudase Alfa Treatment of Patients With Acid Sphingomyelinase Deficiency in Taiwan.

Molecular genetics &amp; genomic medicine2026 Feb

Acid sphingomyelinase deficiency (ASMD) is a rare lysosomal disorder with diverse clinical presentations and often delayed diagnosis. This study investigates the clinical features, genetic variants, and treatment outcomes in Taiwanese patients. We retrospectively reviewed nine ASMD cases in Taiwan, including genetic data and responses to olipudase alfa. Newborn screening data using the NeoLSD MS/MS kit for dried blood spot enzyme activity, followed by lyso-sphingomyelin and molecular testing, were also analysed. The SMPD1 c.1497_1498inv variant was found in 62.5% of alleles among chronic neurovisceral ASMD cases, while c.995C > G appeared in 37.5% of chronic visceral ASMD cases and was also frequent in partial ASMD from newborn screening. Four patients received olipudase alfa; Patient 1, treated for 3 years starting at age 41, showed improved pulmonary function despite persistent thrombocytopenia and splenomegaly. Patients 2, 6, and 7, treated from early childhood, exhibited marked improvements in hepatosplenomegaly, interstitial lung disease, and growth within 1 year of therapy. This study highlights distinct genotype-phenotype correlations in ASMD and supports the clinical benefits of olipudase alfa. Increased awareness and early diagnosis, potentially through newborn screening, are essential for optimizing outcomes in ASMD.

#2

Long-Term Safety and Clinical Outcomes With Olipudase Alfa Enzyme Replacement Therapy in Children and Adolescents With Acid Sphingomyelinase Deficiency.

Journal of inherited metabolic disease2025 Sep

Acid sphingomyelinase deficiency (ASMD) is a rare lysosomal storage disease characterized by hepatosplenomegaly, pulmonary dysfunction, dyslipidemia, and growth deficits. Olipudase alfa (recombinant-human ASM) is the only treatment for non-central-nervous-system ASMD manifestations in children and adults. An open-label long-term study followed 4 to 8 years of olipudase alfa treatment in 20 children and adolescents with ASMD (baseline age (years) 1.5-17.5). At final assessments, splenomegaly and hepatomegaly were reduced relative to baseline (mean percent decrease in spleen and liver volumes 78% ± 1.2% and 59.8% ± 1.5%, respectively). Baseline splenomegaly was severe (spleen volume > 15 MN [multiples of normal]) or moderate (5-15 MN) (n = 12 and n = 8, respectively) versus mild/absent (< 5 MN) (n = 12) or moderate (n = 8) at final assessment. Baseline hepatomegaly was severe (liver volume > 2.5 MN) (n = 10) or moderate (1.25-2.5 MN) (n = 10) versus mild/absent (< 1.25 MN) (n = 19) or moderate (n = 1) at final assessment. Among nine individuals able to perform assessments, diffusing capacity of the lung for carbon monoxide (DLCO) impairment was severe (< 40%) (n = 1), moderate (40%-60%) (n = 4), or mild (60%-80%) (n = 4) at baseline versus absent (n = 4), mild (n = 4) or moderate (n = 1) at final assessment. Mean percent increase in DLCO was 53.7% ± 6.5%. At baseline, 10/20 children had clinical short stature (height Z-scores ≤ - 2) at baseline versus 0/20 at the final assessment. Atherogenic lipid profiles and liver function tests normalized within 2 years and remained stable. Adverse events were mostly mild or moderate, with 4 individuals experiencing 7 serious adverse events, all recovered/resolved. Interpretation: Enzyme replacement therapy with olipudase alfa in children and adolescents with chronic ASMD was well-tolerated with clinically meaningful improvements in multiple disease parameters. Trial Registration: NCT02004704.

#3

Natural disease course of chronic visceral acid sphingomyelinase deficiency in adults: A first step toward treatment criteria.

Journal of inherited metabolic disease2025 Jan

Acid sphingomyelinase deficiency (ASMD) is an ultra-rare lysosomal storage disease with a broad spectrum of manifestations ranging from severe neuropathic forms to attenuated, chronic visceral forms. Manifestations of the chronic visceral subtype are variable and encompass different degrees of hepatosplenomegaly, pulmonary disease and dyslipidemia. The aim of this study was to provide insights into the natural course of adult patients with the chronic visceral subtype. Based on these insights, we proposed tentative criteria for initiation and follow-up of enzyme replacement therapy (ERT). The data of 23 adult patients were collected in a prospective study. Clinical, genetic and demographic data, plasma measurements, abdominal imaging, pulmonary imaging, pulmonary function tests and quality of life questionnaires were collected. Stability of disease based on several clinical, biochemical and radiological markers (i.e., spleen volume, platelet levels, liver volume, alanine aminotransferase [ALT] levels, diffusion capacity of the lungs for carbon monoxide [DLCO] chitotriosidase activity and lysosphingomyelin [LSM]) was assessed. Cardiovascular risk was estimated based on sex, age, smoking, systolic blood pressure and lipid profile. Quality of life was evaluated with the 36-Item Short Form Health Survey and the Health Assessment Questionnaire. Median follow-up was 6.1 years (range 1.3-19.5 years). The most common manifestations were splenomegaly (100%), decreased high-density lipoprotein cholesterol (HDL-C) plasma levels (83%), (signs of) steatosis measured with transient elastography (82%), thrombocytopenia (64%), hepatomegaly (52%) and decreased diffusion capacity (45%). The majority of markers remained stable during follow-up. Twelve patients showed progression of disease: four for spleen volume, two for liver volume, three for DLCO, seven for chitotriosidase activity and three for LSM. One patient showed progression of disease based on four markers, although this patient did not report any problems at the last visit. Cardiovascular risk was estimated and was increased in half of the patients older than 40 years. Patient-reported quality of life did not differ from the general population, but differences in median 36-Item Short Form Health Survey (SF-36) scores of patients with severe pulmonary involvement and those of patients without pulmonary involvement were observed. Tentative criteria for initiation and effect of therapy were proposed. In conclusion, the chronic visceral subtype of ASMD showed a predominantly stable disease course in this cohort. We propose that ERT should be initiated on an individual basis and only in case of progression or symptomatic disease. Collection and analysis of real world data are necessary to refine start, stop and follow-up criteria in the future.

#4

Retention of lysosomal acid sphingomyelinase protects from Niemann-Pick Disease.

Neurobiology of disease2025 Nov

Niemann-Pick Disease (NPD) types A and B are lysosomal storage disorders resulting from dysfunction or loss of acid sphingomyelinase (aSMase), which hydrolyzes sphingomyelin (SM) to ceramide and phosphocholine. Patients with NPD-A develop severe neurologic and visceral pathology and rarely live beyond the age of 3 years, while patients with NPD-B typically live to adolescence/early adulthood without neurologic involvement. There are currently no therapies for NPD-A. SMPD1, the gene that encodes aSMase, gives rise to two distinct enzymes - lysosomal sphingomyelinase (L-SMase) and secretory sphingomyelinase (S-SMase), with the latter being associated with inflammation and chemokine amplification. This study sought to define the role of secretory-deficient aSMase variants in NPD. Human NPD fibroblasts transfected with wildtype or two aSMase variants demonstrated that serine residues at either position 507 or 508 in human aSMase retained L-SMase yet lacked S-SMase activity, basally and in response to inflammatory stimuli. We next generated a novel mouse model harboring the S505A variant (aSMaseS505A), corresponding to S507A in humans, in the endogenous Smpd1 gene. Mice expressing the S505A variant of aSMase retained L-SMase activity and tissue SM levels in the brain but lacked S-SMase activity in serum. ASMaseS505A mice were protected from NPD physiology and pathophysiology including accumulation of foam cells in the spleen, liver and cerebellum, as well as loss of Purkinje cells. Moreover, aSMase-/- mice demonstrated significantly decreased locomotor control and this was prevented in aSMaseS505A mice. Together, these studies suggest a retention of L-SMase may serve to pave the way for ERT in NPD.

#5

Current and Emerging Treatments for Acid Sphingomyelinase Deficiency.

Drugs2025 Dec

Acid sphingomyelinase deficiency is an ultra-rare disease characterised by generalised storage of sphingomyelin, caused by deficiency of the lysosomal enzyme acid sphingomyelinase, owing to the presence of biallelic pathogenic variants in the SMPD1 gene. The main disease manifestations are in the liver, spleen, lung and bone - with some patients having also involvement of the central nervous system. Patients show variable degrees of anaemia, thrombocytopenia and lipid abnormalities, among other findings. Clinically, acid sphingomyelinase deficiency spans from an acute neurovisceral form, with neurological involvement and early death (type A), to a chronic visceral disease, with no or minimal neurological manifestations (type B). An intermediate form, with chronic neurovisceral involvement, is presented by some patients (type A/B). Diagnosis involves the measurement of biomarkers, an assay of enzyme activity and genetic testing. Until a few years ago, treatment was mainly dependent on symptomatic management and bone marrow or solid organ (liver and/or lung) transplantation. In 2022, a specific enzyme replacement therapy with olipudase alfa was approved, and the results available indicate that it changed the therapeutic landscape for patients with acid sphingomyelinase deficiency type B and A/B. Research is being developed to address the needs of patients with acid sphingomyelinase deficiency type A, with gene therapy remaining as a promising approach.

Publicações recentes

Ver todas no PubMed

📚 EuropePMCmostrando 107

2026

Pathogenic Variants and Olipudase Alfa Treatment of Patients With Acid Sphingomyelinase Deficiency in Taiwan.

Molecular genetics &amp; genomic medicine
2025

Retention of lysosomal acid sphingomyelinase protects from Niemann-Pick Disease.

Neurobiology of disease
2025

Current and Emerging Treatments for Acid Sphingomyelinase Deficiency.

Drugs
2025

Long-Term Safety and Clinical Outcomes With Olipudase Alfa Enzyme Replacement Therapy in Children and Adolescents With Acid Sphingomyelinase Deficiency.

Journal of inherited metabolic disease
2025

[Acid sphingomyelinase deficiency: A review].

La Revue de medecine interne
2025

Acid sphingomyelinase deficiency: Laboratory diagnosis, genetic and epidemiologic aspects of a 50-year French cohort.

Molecular genetics and metabolism
2025

Natural disease course of chronic visceral acid sphingomyelinase deficiency in adults: A first step toward treatment criteria.

Journal of inherited metabolic disease
2024

A retrospective study of morbidity and mortality of chronic acid sphingomyelinase deficiency in Germany.

Orphanet journal of rare diseases
2024

Alkaline sphingomyelinase deficiency impairs intestinal mucosal barrier integrity and reduces antioxidant capacity in dextran sulfate sodium-induced colitis.

World journal of gastroenterology
2024

The Genetic Basis, Lung Involvement, and Therapeutic Options in Niemann-Pick Disease: A Comprehensive Review.

Biomolecules
2024

The Long-term Lung and Respiratory Outcomes of Acid Sphingomyelinase Deficiency: A 10- and 20-year Follow-up Study.

In vivo (Athens, Greece)
2023

Continued improvement in disease manifestations of acid sphingomyelinase deficiency for adults with up to 2 years of olipudase alfa treatment: open-label extension of the ASCEND trial.

Orphanet journal of rare diseases
2024

Neurons regulate the esterification of bioactive lipid mediators in the brain of acid sphingomyelinase deficient mice.

Progress in neuro-psychopharmacology &amp; biological psychiatry
2024

Adenotonsillar pathology in mucopolysaccharidoses - lysosomal storage predominates in paracortical CD63+ cells.

Virchows Archiv : an international journal of pathology
2023

Apolipoprotein-mimetic nanodiscs reduce lipid accumulation and improve liver function in acid sphingomyelinase deficiency.

Nanomedicine : nanotechnology, biology, and medicine
2023

Acid Sphingomyelinase Deficiency Type B Patient-Derived Liver Organoids Reveals Altered Lysosomal Gene Expression and Lipid Homeostasis.

International journal of molecular sciences
2023

Screening for lysosomal diseases in a selected pediatric population: the case of Gaucher disease and acid sphingomyelinase deficiency.

Orphanet journal of rare diseases
2023

Glycoprotein non-metastatic protein B (GPNMB) plasma values in patients with chronic visceral acid sphingomyelinase deficiency.

Molecular genetics and metabolism
2023

Effect of acid sphingomyelinase deficiency in type A Niemann-Pick disease on the transport of therapeutic nanocarriers across the blood-brain barrier.

Drug delivery and translational research
2023

Modulation of Dietary Choline Uptake in a Mouse Model of Acid Sphingomyelinase Deficiency.

International journal of molecular sciences
2023

Olipudase Alfa in Non-CNS Manifestations of Acid Sphingomyelinase Deficiency: A Profile of Its Use.

Clinical drug investigation
2023

Ellagic acid and its metabolites urolithins A/B ameliorate most common disease phenotypes in cellular and mouse models for lysosomal storage disorders by enhancing extracellular vesicle secretion.

Neurobiology of disease
2023

Olipudase alfa enzyme replacement therapy for acid sphingomyelinase deficiency (ASMD): sustained improvements in clinical outcomes after 6.5 years of treatment in adults.

Orphanet journal of rare diseases
2023

Importance to include differential diagnostics for acid sphingomyelinase deficiency (ASMD) in patients suspected to have to Gaucher disease.

Molecular genetics and metabolism
2023

Consensus clinical management guidelines for acid sphingomyelinase deficiency (Niemann-Pick disease types A, B and A/B).

Orphanet journal of rare diseases
2023

Sphingomyelin 16:0 is a therapeutic target for neuronal death in acid sphingomyelinase deficiency.

Cell death &amp; disease
2023

Unexpected phenotypic and molecular changes of combined glucocerebrosidase and acid sphingomyelinase deficiency.

Disease models &amp; mechanisms
2023

SMPD1 expression profile and mutation landscape help decipher genotype-phenotype association and precision diagnosis for acid sphingomyelinase deficiency.

Hereditas
2023

Healthcare Service Use Patterns Among Patients with Acid Sphingomyelinase Deficiency Type B: A Retrospective US Claims Analysis.

Advances in therapy
2023

Acid sphingomyelinase deficiency (ASMD): addressing knowledge gaps in unmet needs and patient journey in Italy-a Delphi consensus.

Internal and emergency medicine
2023

Novel breakthrough in the treatment of sphingomyelinase deficiency.

International journal of surgery (London, England)
2022

Long-term safety and clinical outcomes of olipudase alfa enzyme replacement therapy in pediatric patients with acid sphingomyelinase deficiency: two-year results.

Orphanet journal of rare diseases
2023

Neurofilament light chain in cerebrospinal fluid as a novel biomarker in evaluating both clinical severity and therapeutic response in Niemann-Pick disease type C1.

Genetics in medicine : official journal of the American College of Medical Genetics
2023

Similarities and differences between Gaucher disease and acid sphingomyelinase deficiency: An algorithm to support the diagnosis.

European journal of internal medicine
2022

Quantification of lysosphingomyelin and lysosphingomyelin-509 for the screening of acid sphingomyelinase deficiency.

Orphanet journal of rare diseases
2022

Compound Heterozygote Mutation in the SMPD1 Gene Leading to Nieman-Pick Disease Type A.

The American journal of case reports
2022

Intravenous 2-hydroxypropyl-β-cyclodextrin (Trappsol® Cyclo™) demonstrates biological activity and impacts cholesterol metabolism in the central nervous system and peripheral tissues in adult subjects with Niemann-Pick Disease Type C1: Results of a phase 1 trial.

Molecular genetics and metabolism
2022

Phenotypic expression of swallowing function in Niemann-Pick disease type C1.

Orphanet journal of rare diseases
2022

Health insurance literacy and health services access barriers in Niemann-Pick disease: the patient and caregiver voice.

Orphanet journal of rare diseases
2022

Massive Accumulation of Sphingomyelin Affects the Lysosomal and Mitochondria Compartments and Promotes Apoptosis in Niemann-Pick Disease Type A.

Journal of molecular neuroscience : MN
2022

Olipudase Alfa: First Approval.

Drugs
2022

A 2-bp deletion mutation in SMPD1 gene leading to lysosomal acid sphingomyelinase deficiency in a Chinese consanguineous pedigree.

Journal of pediatric endocrinology &amp; metabolism : JPEM
2022

Neonatal cholestasis is an early liver manifestation of children with acid sphingomyelinase deficiency.

BMC gastroenterology
2022

A randomized, placebo-controlled clinical trial evaluating olipudase alfa enzyme replacement therapy for chronic acid sphingomyelinase deficiency (ASMD) in adults: One-year results.

Genetics in medicine : official journal of the American College of Medical Genetics
2022

Acid Sphingomyelinase Deficiency: Sharing Experience of Disease Monitoring and Severity in France.

Journal of clinical medicine
2022

Atherogenic lipid profile in patients with Niemann-Pick disease type B: What treatment strategies?

Journal of clinical lipidology
2022

Severely impaired CTL killing is a feature of the neurological disorder Niemann-Pick disease type C1.

Blood
2022

Peripheral neuropathy as a very rare symptom in a patient with Niemann-Pick type C with negative enzymatic evaluation: a case report.

Journal of medical case reports
2021

Importance of Disease Recognition and Proper Disease Nomenclature for Patients With Acid Sphingomyelinase Deficiency (Historically Known as Niemann-Pick Types A or B) With a Disease-Specific Treatment on the Horizon.

Clinical pediatrics
2021

Acid Sphingomyelinase, a Lysosomal and Secretory Phospholipase C, Is Key for Cellular Phospholipid Catabolism.

International journal of molecular sciences
2021

Plasma lyso-sphingomyelin levels are positively associated with clinical severity in acid sphingomyelinase deficiency.

Molecular genetics and metabolism reports
2021

Functional characterization of novel variants in SMPD1 in Indian patients with acid sphingomyelinase deficiency.

Human mutation
2021

Prospective study of the natural history of chronic acid sphingomyelinase deficiency in children and adults: eleven years of observation.

Orphanet journal of rare diseases
2021

Interstitial lung disease in lysosomal storage disorders.

European respiratory review : an official journal of the European Respiratory Society
2021

One-year results of a clinical trial of olipudase alfa enzyme replacement therapy in pediatric patients with acid sphingomyelinase deficiency.

Genetics in medicine : official journal of the American College of Medical Genetics
2021

Clinical, biochemical, and genotype-phenotype correlations of 118 patients with Niemann-Pick disease Types A/B.

Human mutation
2021

Altered Macrophage Function Associated with Crystalline Lung Inflammation in Acid Sphingomyelinase Deficiency.

American journal of respiratory cell and molecular biology
2021

Changes in PCSK 9 and apolipoprotein B100 in Niemann-Pick disease after enzyme replacement therapy with olipudase alfa.

Orphanet journal of rare diseases
2021

Periodontal condition and treatment in a patient with rare systemic condition: A case report for acid sphingomyelinase deficiency.

Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry
2020

Inhibition of fatty acid amide hydrolase prevents pathology in neurovisceral acid sphingomyelinase deficiency by rescuing defective endocannabinoid signaling.

EMBO molecular medicine
2020

Apolipoprotein D-mediated preservation of lysosomal function promotes cell survival and delays motor impairment in Niemann-Pick type A disease.

Neurobiology of disease
2020

Combined Emphysema and Interstitial Lung Disease as a Rare Presentation of Pulmonary Involvement in a Patient with Chronic Visceral Acid Sphingomyelinase Deficiency (Niemann-Pick Disease Type B).

The American journal of case reports
2020

Autopsy pathology of infantile neurovisceral ASMD (Niemann-Pick Disease type A): Clinicopathologic correlations of a case report.

Molecular genetics and metabolism reports
2020

Clinical relevance of endpoints in clinical trials for acid sphingomyelinase deficiency enzyme replacement therapy.

Molecular genetics and metabolism
2020

Finding pathogenic commonalities between Niemann-Pick type C and other lysosomal storage disorders: Opportunities for shared therapeutic interventions.

Biochimica et biophysica acta. Molecular basis of disease
2020

Novel mutations in the SMPD1 gene in Jordanian children with Acid sphingomyelinase deficiency (Niemann-Pick types A and B).

Gene
2020

An induced pluripotent stem cell line (TRNDi001-D) from a Niemann-Pick disease type C1 (NPC1) patient carrying a homozygous p. I1061T (c. 3182T>C) mutation in the NPC1 gene.

Stem cell research
2020

Biochemical and imaging parameters in acid sphingomyelinase deficiency: Potential utility as biomarkers.

Molecular genetics and metabolism
2020

An Early-Onset Neuronopathic Form of Acid Sphingomyelinase Deficiency: A SMPD1 p.C133Y Mutation in the Saposin Domain of Acid Sphingomyelinase.

The Tohoku journal of experimental medicine
2020

Acid sphingomyelinase deficiency exacerbates LPS-induced experimental periodontitis.

Oral diseases
2019

A novel association between angiokeratoma corporis diffusum and acid sphingomyelinase deficiency.

Pediatric dermatology
2019

Adeno-associated viral vector serotype 9-based gene therapy for Niemann-Pick disease type A.

Science translational medicine
2019

Solving the secretory acid sphingomyelinase puzzle: Insights from lysosome-mediated parasite invasion and plasma membrane repair.

Cellular microbiology
2019

An induced pluripotent stem cell line (TRNDi009-C) from a Niemann-Pick disease type A patient carrying a heterozygous p.L302P (c.905 T>C) mutation in the SMPD1 gene.

Stem cell research
2019

Niemann-Pick disease A or B in four pediatric patients and SMPD1 mutation carrier frequency in the Mexican population.

Annals of hepatology
2019

δ-Tocopherol Effect on Endocytosis and Its Combination with Enzyme Replacement Therapy for Lysosomal Disorders: A New Type of Drug Interaction?

The Journal of pharmacology and experimental therapeutics
2019

Niemann-Pick Type A Disease: Behavior of Neutral Sphingomyelinase and Vitamin D Receptor.

International journal of molecular sciences
2019

Acid sphingomyelinase deficiency (Niemann‒Pick disease Type B) as an inflammatory disease.

The Journal of heart and lung transplantation : the official publication of the International Society for Heart Transplantation
2019

Chronic visceral acid sphingomyelinase deficiency (Niemann-Pick disease type B) in 16 Polish patients: long-term follow-up.

Orphanet journal of rare diseases
2019

Defects in sarcolemma repair and skeletal muscle function after injury in a mouse model of Niemann-Pick type A/B disease.

Skeletal muscle
2019

Lipid-induced lysosomal damage after demyelination corrupts microglia protective function in lysosomal storage disorders.

The EMBO journal
2019

Recommendations for clinical monitoring of patients with acid sphingomyelinase deficiency (ASMD).

Molecular genetics and metabolism
2018

Deep sequencing of SMPD1 gene revealed a heterozygous frameshift mutation (p.Ser192Alafs) in a Palestinian infant with Niemann-Pick disease type A: a case report.

Journal of medical case reports
2018

Utility of amniotic fluid chitotriosidase in the prenatal diagnosis of lysosomal storage disorders.

Clinical biochemistry
2018

The impact of biomarkers analysis in the diagnosis of Niemann-Pick C disease and acid sphingomyelinase deficiency.

Clinica chimica acta; international journal of clinical chemistry
2018

Burden of Illness in Acid Sphingomyelinase Deficiency: A Retrospective Chart Review of 100 Patients.

JIMD reports
2018

Olipudase alfa for treatment of acid sphingomyelinase deficiency (ASMD): safety and efficacy in adults treated for 30 months.

Journal of inherited metabolic disease
2017

Limited benefits of presymptomatic cord blood transplantation in neurovisceral acid sphingomyelinase deficiency (ASMD) intermediate type.

European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
2017

Consensus recommendation for a diagnostic guideline for acid sphingomyelinase deficiency.

Genetics in medicine : official journal of the American College of Medical Genetics
2017

Quantitation of plasmatic lysosphingomyelin and lysosphingomyelin-509 for differential screening of Niemann-Pick A/B and C diseases.

Analytical biochemistry
2017

[Acid sphingomyelinase deficiency (Niemann-Pick disease type B) in adulthood: A retrospective multicentric study of 28 adult cases].

La Revue de medecine interne
2016

Cathepsin S contributes to microglia-mediated olfactory dysfunction through the regulation of Cx3cl1-Cx3cr1 axis in a Niemann-Pick disease type C1 model.

Glia
2016

Morphology of Niemann-Pick type A metabolic storage disorder.

Blood
2017

Sphingomyelin-induced inhibition of the plasma membrane calcium ATPase causes neurodegeneration in type A Niemann-Pick disease.

Molecular psychiatry
2016

Types A and B Niemann-Pick Disease.

Pediatric endocrinology reviews : PER
2016

Induced Pluripotent Stem Cells for Disease Modeling and Evaluation of Therapeutics for Niemann-Pick Disease Type A.

Stem cells translational medicine
2016

Clearance of Hepatic Sphingomyelin by Olipudase Alfa Is Associated With Improvement in Lipid Profiles in Acid Sphingomyelinase Deficiency.

The American journal of surgical pathology
2016

Cause of death in patients with chronic visceral and chronic neurovisceral acid sphingomyelinase deficiency (Niemann-Pick disease type B and B variant): Literature review and report of new cases.

Molecular genetics and metabolism
2016

Excess sphingomyelin disturbs ATG9A trafficking and autophagosome closure.

Autophagy
2016

Seven novel mutations of the SMPD1 gene in four Chinese patients with Niemann-Pick disease type A and prenatal diagnosis for four fetuses.

European journal of medical genetics
2016

SMPD1 Mutation Update: Database and Comprehensive Analysis of Published and Novel Variants.

Human mutation
2015

Evaluation of Aminoglycoside and Non-Aminoglycoside Compounds for Stop-Codon Readthrough Therapy in Four Lysosomal Storage Diseases.

PloS one
2015

Alleged Detrimental Mutations in the SMPD1 Gene in Patients with Niemann-Pick Disease.

International journal of molecular sciences
2015

Successful within-patient dose escalation of olipudase alfa in acid sphingomyelinase deficiency.

Molecular genetics and metabolism
2015

Altered Clathrin-Independent Endocytosis in Type A Niemann-Pick Disease Cells and Rescue by ICAM-1-Targeted Enzyme Delivery.

Molecular pharmaceutics
2016

Novel first-dose adverse drug reactions during a phase I trial of olipudase alfa (recombinant human acid sphingomyelinase) in adults with Niemann-Pick disease type B (acid sphingomyelinase deficiency).

Genetics in medicine : official journal of the American College of Medical Genetics
2015

Four novel p.N385K, p.V36A, c.1033-1034insT and c.1417-1418delCT mutations in the sphingomyelin Phosphodiesterase 1 (SMPD1) gene in patients with types A and B Niemann-Pick disease (NPD).

International journal of molecular sciences

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Doenças relacionadas

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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.

  1. Pathogenic Variants and Olipudase Alfa Treatment of Patients With Acid Sphingomyelinase Deficiency in Taiwan.
    Molecular genetics &amp; genomic medicine· 2026· PMID 41692468mais citado
  2. Long-Term Safety and Clinical Outcomes With Olipudase Alfa Enzyme Replacement Therapy in Children and Adolescents With Acid Sphingomyelinase Deficiency.
    Journal of inherited metabolic disease· 2025· PMID 40937531mais citado
  3. Natural disease course of chronic visceral acid sphingomyelinase deficiency in adults: A first step toward treatment criteria.
    Journal of inherited metabolic disease· 2025· PMID 39177062mais citado
  4. Retention of lysosomal acid sphingomyelinase protects from Niemann-Pick Disease.
    Neurobiology of disease· 2025· PMID 41106691mais citado
  5. Current and Emerging Treatments for Acid Sphingomyelinase Deficiency.
    Drugs· 2025· PMID 41076598mais citado
  6. Differential Trafficking Phenotypes of NPC1 Mutant Proteins Reveal Distinct Cholesterol Accumulation Profiles.
    J Inherit Metab Dis· 2026· PMID 41982147recente
  7. A case of Joubert Syndrome and NPC1 mutation in a 7-year-old girl: presented with neuromotor developmental delay and ataxia.
    Neurocase· 2026· PMID 41979576recente
  8. Molecular and histological characterizations reveal two distinct senescent microglia populations in Niemann-Pick disease type C mouse model.
    Geroscience· 2026· PMID 41963705recente
  9. Zuclopenthixol inhibits residual activity of acid sphingomyelinase in Niemann pick disease type B: a case report with in vitro validation.
    Orphanet J Rare Dis· 2026· PMID 41957619recente
  10. A scalable human-zebrafish xenotransplantation model reveals gastrosome-mediated processing of dying neurons by human microglia.
    Commun Biol· 2026· PMID 41957412recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:77292(Orphanet)
  2. OMIM OMIM:257200(OMIM)
  3. MONDO:0009756(MONDO)
  4. GARD:7206(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q50349676(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

Deficiência de esfingomielinase ácida neurovisceral da infância
Compêndio · Raras BR

Deficiência de esfingomielinase ácida neurovisceral da infância

ORPHA:77292 · MONDO:0009756
🇧🇷 Brasil SUS
CEAF
1AOlipudase alfa
Internações
890/ano
Prevalência BR
1:60000
Custo SUS
R$ 45.670/internação
Dados
DATASUS 2024
Geral
Prevalência
<1 / 1 000 000
Herança
Autosomal recessive
CID-10
E75.2 · Outras esfingolipidoses
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Europe)
MedGen
UMLS
C0268242
Wikidata
Papers 10a
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