Raras
Buscar doenças, sintomas, genes...
Deficiência de fosfoenolpiruvato carboxicinase
ORPHA:2880CID-10 · E74.4CID-11 · 5C53.0YDOENÇA RARA

A deficiência de fosfoenolpiruvato carboxiquinase (PEPCK) é um distúrbio da gliconeogênese que resulta do comprometimento da enzima PEPCK e compreende formas citosólicas (PEPCK1) e mitocondriais (PEPCK2) de deficiência enzimática. O início dos sintomas é neonatal ou alguns meses após o nascimento e inclui hipoglicemia associada a episódios agudos de acidose láctica grave, deterioração neurológica progressiva, insuficiência hepática grave, acidose tubular renal e síndrome de Fanconi. Os pacientes também apresentam danos multissistêmicos progressivos com retardo de crescimento, fraqueza muscular e hipotonia, atraso no desenvolvimento com convulsões, espasticidade, letargia, microcefalia e cardiomiopatia. Até o momento, não há evidências conclusivas da existência de uma forma isolada desse transtorno.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

A deficiência de fosfoenolpiruvato carboxiquinase (PEPCK) é um distúrbio da gliconeogênese que resulta do comprometimento da enzima PEPCK e compreende formas citosólicas (PEPCK1) e mitocondriais (PEPCK2) de deficiência enzimática. O início dos sintomas é neonatal ou alguns meses após o nascimento e inclui hipoglicemia associada a episódios agudos de acidose láctica grave, deterioração neurológica progressiva, insuficiência hepática grave, acidose tubular renal e síndrome de Fanconi. Os pacientes também apresentam danos multissistêmicos progressivos com retardo de crescimento, fraqueza muscular e hipotonia, atraso no desenvolvimento com convulsões, espasticidade, letargia, microcefalia e cardiomiopatia. Até o momento, não há evidências conclusivas da existência de uma forma isolada desse transtorno.

Publicações científicas
13 artigos
Último publicado: 2026 Jan

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
10
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: E74.4
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (6)
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)rehabilitation
0202080013
Teste do pezinho (triagem neonatal)
0301070040
Atendimento em reabilitação — doenças raras
Você se identifica com essa condição?
O Raras está aqui pra te apoiar — com ou sem diagnóstico

Encontrou um erro ou informação desatualizada? Sugira uma correção →

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
9 sintomas
🫃
Digestivo
6 sintomas
📏
Crescimento
5 sintomas
🫘
Rins
3 sintomas
🫁
Pulmão
1 sintomas
👁️
Olhos
1 sintomas

+ 15 sintomas em outras categorias

Características mais comuns

90%prev.
Hipoglicemia recorrente
Muito frequente (99-80%)
55%prev.
Concentração elevada de aspartato aminotransferase circulante
Frequente (79-30%)
55%prev.
Acidose láctica
Frequente (79-30%)
55%prev.
Aumento da concentração urinária de alfa-cetoglutarato
Frequente (79-30%)
55%prev.
Hiperglutaminemia
Frequente (79-30%)
55%prev.
Aumento da concentração circulante de lactato
Frequente (79-30%)
40sintomas
Muito frequente (1)
Frequente (9)
Ocasional (10)
Muito raro (2)
Sem dados (18)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 40 características clínicas mais associadas, ordenadas por frequência.

Hipoglicemia recorrenteRecurrent hypoglycemia
Muito frequente (99-80%)90%
Concentração elevada de aspartato aminotransferase circulanteElevated circulating aspartate aminotransferase concentration
Frequente (79-30%)55%
Acidose lácticaLactic acidosis
Frequente (79-30%)55%
Aumento da concentração urinária de alfa-cetoglutaratoIncreased urine alpha-ketoglutarate concentration
Frequente (79-30%)55%
HiperglutaminemiaHyperglutaminemia
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico13PubMed
Últimos 10 anos10publicações
Pico20223 papers
Linha do tempo
2026Hoje · 2026📈 2022Ano 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

2 genes identificados com associação a esta condição. Padrão de herança: Autosomal recessive, Mitochondrial inheritance.

PCK2Phosphoenolpyruvate carboxykinase [GTP], mitochondrialDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Mitochondrial phosphoenolpyruvate carboxykinase that catalyzes the conversion of oxaloacetate (OAA) to phosphoenolpyruvate (PEP), the rate-limiting step in the metabolic pathway that produces glucose from lactate and other precursors derived from the citric acid cycle (PubMed:28955899). Can play an active role in glyceroneogenesis and gluconeogenesis (PubMed:28955899). Also acts as a serine/threonine-protein kinase: phosphorylates and activates ACSL4, thereby promoting ferroptosis (PubMed:387201

LOCALIZAÇÃO

Mitochondrion

VIAS BIOLÓGICAS (1)
Gluconeogenesis
MECANISMO DE DOENÇA

Mitochondrial phosphoenolpyruvate carboxykinase deficiency

Metabolic disorder resulting from impaired gluconeogenesis. It is a rare disease with less than 10 cases reported in the literature. Clinical characteristics include hypotonia, hepatomegaly, failure to thrive, lactic acidosis and hypoglycemia. Autopsy reveals fatty infiltration of both the liver and kidneys. The disorder is transmitted as an autosomal recessive trait.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Fígado
126.5 TPM
Intestino delgado
62.5 TPM
Linfócitos
56.4 TPM
Fibroblastos
44.7 TPM
Cólon transverso
35.3 TPM
OUTRAS DOENÇAS (2)
phosphoenolpyruvate carboxykinase deficiencyphosphoenolpyruvate carboxykinase deficiency, mitochondrial
HGNC:8725UniProt:Q16822
PCK1Phosphoenolpyruvate carboxykinase, cytosolic [GTP]Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Cytosolic phosphoenolpyruvate carboxykinase that catalyzes the reversible decarboxylation and phosphorylation of oxaloacetate (OAA) and acts as the rate-limiting enzyme in gluconeogenesis (PubMed:24863970, PubMed:26971250, PubMed:28216384, PubMed:30193097). Regulates cataplerosis and anaplerosis, the processes that control the levels of metabolic intermediates in the citric acid cycle (PubMed:24863970, PubMed:26971250, PubMed:28216384, PubMed:30193097). At low glucose levels, it catalyzes the ca

LOCALIZAÇÃO

Cytoplasm, cytosolEndoplasmic reticulum

VIAS BIOLÓGICAS (5)
GluconeogenesisFOXO-mediated transcription of oxidative stress, metabolic and neuronal genesTranscriptional regulation of white adipocyte differentiationAbacavir metabolismNR1H2 & NR1H3 regulate gene expression linked to gluconeogenesis
MECANISMO DE DOENÇA

Phosphoenolpyruvate carboxykinase deficiency, cytosolic

An autosomal recessive metabolic disorder characterized by impaired gluconeogenesis, hypoglycemia, hypotonia, hepatomegaly, hepatic dysfunction, failure to thrive, lactic acidosis, and elevated tricarboxylic acid intermediates, particularly fumarate, in urine.

EXPRESSÃO TECIDUAL(Tecido-específico)
Fígado
530.0 TPM
Rim - Córtex
147.6 TPM
Adipose Visceral Omentum
71.4 TPM
Rim - Medula
63.5 TPM
Tecido adiposo
62.3 TPM
OUTRAS DOENÇAS (2)
phosphoenolpyruvate carboxykinase deficiency, cytosolicphosphoenolpyruvate carboxykinase deficiency
HGNC:8724UniProt:P35558

Variantes genéticas (ClinVar)

91 variantes patogênicas registradas no ClinVar.

🧬 PCK1: NM_002591.4(PCK1):c.453_462delinsACCTCTGTCG (p.Ser151_Ser154=) ()
🧬 PCK1: NM_002591.4(PCK1):c.1366G>A (p.Val456Met) ()
🧬 PCK1: NM_002591.4(PCK1):c.1833_1834del (p.Glu611fs) ()
🧬 PCK1: NC_000020.10:g.55906911_58646228del ()
🧬 PCK1: NM_002591.4(PCK1):c.705C>G (p.Tyr235Ter) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 97 variantes classificadas pelo ClinVar.

24
63
10
Patogênica (24.7%)
VUS (64.9%)
Benigna (10.3%)
VARIANTES MAIS SIGNIFICATIVAS
PCK1: NM_002591.4(PCK1):c.705C>G (p.Tyr235Ter) [Likely pathogenic]
PCK1: NM_002591.4(PCK1):c.574T>C (p.Cys192Arg) [Pathogenic]
PCK1: NM_002591.4(PCK1):c.961+1G>A [Likely pathogenic]
PCK1: NM_002591.4(PCK1):c.1320T>C (p.Gly440=) [Conflicting classifications of pathogenicity]
PCK1: NM_002591.4(PCK1):c.474C>T (p.Ile158=) [Conflicting classifications of pathogenicity]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Deficiência de fosfoenolpiruvato carboxicinase

🗺️

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.

🧪 Está conduzindo uma pesquisa?
Divulgue para pacientes e familiares que acompanham esta doença.
Divulgar pesquisa →

Publicações mais relevantes

📖Melhor nível de evidência: Revisão
Timeline de publicações
7 papers (10 anos)
#1

A Novel PCK1 Gene Variant Associated With Cytosolic Phosphoenolpyruvate Carboxykinase Deficiency: Two Siblings With Different Clinical Presentations.

JIMD reports2026 Jan

Cytosolic phosphoenolpyruvate carboxykinase (PEPCK-C) deficiency is a rare autosomal recessive gluconeogenesis disorder caused by variants in the PCK1 gene. Clinically, PEPCK-C deficiency is characterized by recurrent episodes of fasting-induced hypoglycemia, liver dysfunction, and seizures, with the first hypoglycemic episode typically occurring in the neonatal period or in early childhood. We report a case of PEPCK-C deficiency in an 8-year-old who presented with transient severe acute liver and kidney failure, accompanied by markedly elevated glutamine levels as the initial manifestation of the disease. The acute liver failure was reversible following continuous glucose infusion. Next-generation sequencing identified two variants in the PCK1 gene: one previously known pathogenic variant, c.925G>A p.(Gly309Arg), and a second previously unreported variant, c.1833_1834del p.(Glu611AspfsTer16). These variants were confirmed to be in a compound heterozygous state. Based on the patient's clinical presentation, the second variant was classified as likely pathogenic. Subsequent genetic testing of family members revealed that the patient's 12-year-old sister has the same PCK1 variants but remains asymptomatic to date. Given the clinical findings, we propose that the c.1833_1834del p.(Glu611AspfsTer16) variant in the PCK1 gene should be classified as likely pathogenic. We recommend considering molecular diagnostics for PEPCK-C deficiency in patients presenting with severe acute liver failure and elevated glutamine levels, as early diagnosis and intervention may lead to a reversible outcome.

#2

Expanding the clinical spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency: novel PCK1 variants in four Arabian Gulf families.

Orphanet journal of rare diseases2023 Nov 03

In metabolic stress, the cytosolic phosphoenolpyruvate carboxykinase (PEPCK-C) enzyme is involved in energy production through the gluconeogenesis pathway. PEPCK-C deficiency is a rare childhood-onset autosomal recessive metabolic disease caused by PCK1 genetic defects. Previous studies showed a broad clinical spectrum ranging from asymptomatic to recurrent hypoglycemia with/without lactic acidosis, encephalopathy, seizures, and liver failure. In this article, we discuss the occurrence of PEPCK-C deficiency in four families from the United Arab Emirates and Oman. All patients presented with unexplained hypoglycemia as a common feature. Two out of the seven patients presented with episodes of encephalopathy that resulted in seizures and neuroregression leading to global developmental delay and one patient had a neonatal presentation. Observed biochemical abnormalities include elevated lactate, transaminases, and tricarboxylic acid cycle metabolites in most patients. Elevated creatine kinase was documented in two patients. Whole exome sequencing revealed two novel (c.574T > C, and c.1268 C > T) and a previously reported splice site (c.961 + 1G > A) PCK1 variant in the affected families. Patients become vulnerable during intercurrent illness; thus, prevention and prompt reversal of a catabolic state are crucial to avoid irreversible brain damage. This report will help to expand the clinical understanding of this rare disease and recommends screening for PEPCK-C deficiency in unexplained hypoglycemia.

#3

Metformin can mitigate skeletal dysplasia caused by Pck2 deficiency.

International journal of oral science2022 Nov 15

As an important enzyme for gluconeogenesis, mitochondrial phosphoenolpyruvate carboxykinase (PCK2) has further complex functions beyond regulation of glucose metabolism. Here, we report that conditional knockout of Pck2 in osteoblasts results in a pathological phenotype manifested as craniofacial malformation, long bone loss, and marrow adipocyte accumulation. Ablation of Pck2 alters the metabolic pathways of developing bone, particularly fatty acid metabolism. However, metformin treatment can mitigate skeletal dysplasia of embryonic and postnatal heterozygous knockout mice, at least partly via the AMPK signaling pathway. Collectively, these data illustrate that PCK2 is pivotal for bone development and metabolic homeostasis, and suggest that regulation of metformin-mediated signaling could provide a novel and practical strategy for treating metabolic skeletal dysfunction.

#4

Cytosolic phosphoenolpyruvate carboxykinase deficiency: Expanding the clinical phenotype and novel laboratory findings.

Journal of inherited metabolic disease2022 Mar

Cytosolic phosphoenolpyruvate carboxykinase (PEPCK-C) deficiency due to the homozygous PCK1 variant has recently been associated with childhood-onset hypoglycemia with a recognizable pattern of abnormal urine organic acids. In this study, 21 children and 3 adult patients with genetically confirmed PEPCK-C deficiency were diagnosed during the years 2016 to 2019 and the available biochemical and clinical data were collected. All patients were ethnic Finns. Most patients (22 out of 24) had a previously published homozygous PCK1 variant c.925G>A. Two patients had a novel compound heterozygous PCK1 variant c.925G>A and c.716C>T. The laboratory results showed abnormal urine organic acid profile with increased tricarboxylic acid cycle intermediates and inadequate ketone body production during hypoglycemia. The hypoglycemic episodes manifested predominantly in the morning. Infections, fasting or poor food intake, heavy exercise, alcohol consumption, and breastfeeding were identified as triggering factors. Five patients presented with neonatal hypoglycemia. Hypoglycemic seizures occurred in half of the patients (12 out of 24). The first hypoglycemic episode often occurred at the age of 1-2 years, but it sometimes presented at a later age, and could re-occur during school age or adulthood. This study adds to the laboratory data on PEPCK-C deficiency, confirming the recognizable urine organic acid pattern and identifying deficient ketogenesis as a novel laboratory finding. The phenotype is expanded suggesting that the risk of hypoglycemia may continue into adulthood if predisposing factors are present.

#5

Genotypic and phenotypic spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency.

Molecular genetics and metabolism2022

Pathogenic biallelic variants in PCK1 coding for the cytosolic phosphoenolpyruvate carboxykinase (PEPCK-C) cause PEPCK-C deficiency, a rare disorder of gluconeogenesis presenting with hypoglycemia, lactic acidosis, and hepatopathy. To date, there has been no systematic analysis of its phenotypic, biochemical, and genetic spectrum. All currently published individuals and a novel patient with genetically confirmed PEPCK-C deficiency were included. Clinical, biochemical, and genetic findings were analyzed. Protein and in-silico prediction score modeling was applied to analyze potential variant effects. Thirty-two individuals from 25 families were found, including one previously unreported patient. The typical biochemical pattern was hypoglycemia triggered by catabolic situations, elevated urinary concentrations of tricarboxylic acid cycle metabolites, mildly elevated alanine and aspartate aminotransferase and elevated lactate concentrations in serum. Plasma glutamine concentrations were elevated in some patients and may be a suitable marker for newborn screening. With adequate treatment, biochemical abnormalities usually normalized following a hypoglycemic episode. Symptom onset usually occurred in infancy with a broad range from neonatal age to adulthood. Regardless of the genotype, different phenotypes with a broad clinical spectrum were found. To date, eight genotypes with nine different PCK1 variants were identified, of which alleles with the recurrent variant c.925G > A; p.(Gly309Arg) are predominant and appear to be endemic in the Finnish population. Protein modeling suggests altered manganese- and substrate-binding as superordinate pathomechanisms. Environmental factors appear to be the main determinant for the phenotype in patients with biallelic variants in PCK1. Based on the biochemical pattern, PEPCK-C deficiency is a recognizable cause of childhood hypoglycemia. It is a treatable disease and early diagnosis is important to prevent metabolic derailment and morbidity. Newborn screening can identify at least a sub-cohort of affected individuals through elevated glutamine concentrations in dry blood.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC12 artigos no totalmostrando 10

2026

A Novel PCK1 Gene Variant Associated With Cytosolic Phosphoenolpyruvate Carboxykinase Deficiency: Two Siblings With Different Clinical Presentations.

JIMD reports
2023

Expanding the clinical spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency: novel PCK1 variants in four Arabian Gulf families.

Orphanet journal of rare diseases
2022

Metformin can mitigate skeletal dysplasia caused by Pck2 deficiency.

International journal of oral science
2022

Genotypic and phenotypic spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency.

Molecular genetics and metabolism
2022

Cytosolic phosphoenolpyruvate carboxykinase deficiency: Expanding the clinical phenotype and novel laboratory findings.

Journal of inherited metabolic disease
2021

Cytosolic Phosphoenolpyruvate Carboxykinase Deficiency: Cause of Hypoglycemia-Induced Seizure and Death.

Neuropediatrics
2018

pckA-deficient Porphyromonas gingivalis W83 shows reduction in hemagglutination activity and alteration in the distribution of gingipain activity.

European journal of oral sciences
2017

Novel homozygous PCK1 mutation causing cytosolic phosphoenolpyruvate carboxykinase deficiency presenting as childhood hypoglycemia, an abnormal pattern of urine metabolites and liver dysfunction.

Molecular genetics and metabolism
2017

PEPCK-C reexpression in the liver counters neonatal hypoglycemia in Pck1 del/del mice, unmasking role in non-gluconeogenic tissues.

Journal of physiology and biochemistry
2016

Cytosolic phosphoenolpyruvate carboxykinase deficiency presenting with acute liver failure following gastroenteritis.

Molecular genetics and metabolism
Ver todos os 12 no EuropePMC

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

Ainda não temos associações cadastradas para Deficiência de fosfoenolpiruvato carboxicinase.

É de uma associação que acompanha esta doença? Fale com a gente →

Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

Ainda não existe comunidade no Raras para Deficiência de fosfoenolpiruvato carboxicinase

Pacientes, familiares e cuidadores se organizam em comunidades pra compartilhar experiências, fazer perguntas e se apoiar. Você pode ser o primeiro.

Tire suas dúvidas

Perguntas, dicas e experiências compartilhadas aqui na página

Participe da discussão

Faça login para postar dúvidas, compartilhar experiências e interagir com especialistas.

Fazer login

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. A Novel PCK1 Gene Variant Associated With Cytosolic Phosphoenolpyruvate Carboxykinase Deficiency: Two Siblings With Different Clinical Presentations.
    JIMD reports· 2026· PMID 41608521mais citado
  2. Expanding the clinical spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency: novel PCK1 variants in four Arabian Gulf families.
    Orphanet journal of rare diseases· 2023· PMID 37924129mais citado
  3. Metformin can mitigate skeletal dysplasia caused by Pck2 deficiency.
    International journal of oral science· 2022· PMID 36376276mais citado
  4. Cytosolic phosphoenolpyruvate carboxykinase deficiency: Expanding the clinical phenotype and novel laboratory findings.
    Journal of inherited metabolic disease· 2022· PMID 34622459mais citado
  5. Genotypic and phenotypic spectrum of cytosolic phosphoenolpyruvate carboxykinase deficiency.
    Molecular genetics and metabolism· 2022· PMID 35868242mais citado
  6. Cytosolic Phosphoenolpyruvate Carboxykinase Deficiency: Cause of Hypoglycemia-Induced Seizure and Death.
    Neuropediatrics· 2021· PMID 33445193recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:2880(Orphanet)
  2. MONDO:0017320(MONDO)
  3. GARD:16613(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q18424118(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 fosfoenolpiruvato carboxicinase
Compêndio · Raras BR

Deficiência de fosfoenolpiruvato carboxicinase

ORPHA:2880 · MONDO:0017320
Prevalência
<1 / 1 000 000
Casos
10 casos conhecidos
Herança
Autosomal recessive, Mitochondrial inheritance
CID-10
E74.4 · Distúrbios do metabolismo do piruvato e da gliconeogênese
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0268194
EuropePMC
Wikidata
Papers 10a
DiscussaoAtiva

Nenhuma novidade ainda. O agente esta monitorando.

0membros
0novidades