A deficiência de fosfofrutoquinase muscular (PFK) (doença de Tarui), ou doença de armazenamento de glicogênio tipo 7 (GSD7), é uma forma rara de doença de armazenamento de glicogênio caracterizada por fadiga ao esforço e intolerância ao exercício muscular. Ocorre na infância.
Introdução
O que você precisa saber de cara
A deficiência de fosfofrutoquinase muscular (PFK) (doença de Tarui), ou doença de armazenamento de glicogênio tipo 7 (GSD7), é uma forma rara de doença de armazenamento de glicogênio caracterizada por fadiga ao esforço e intolerância ao exercício muscular. Ocorre na infância.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Entender a doença
Do básico ao detalhe, leia no seu ritmo
Preparando trilha educativa...
Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 16 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 30 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
Triagem neonatal (Teste do Pezinho)
A triagem neonatal permite diagnóstico precoce e início imediato do tratamento.
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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.
Catalyzes the phosphorylation of D-fructose 6-phosphate to fructose 1,6-bisphosphate by ATP, the first committing step of glycolysis
Cytoplasm
Glycogen storage disease 7
A metabolic disorder characterized by exercise intolerance with associated nausea and vomiting, muscle cramping, exertional myopathy and compensated hemolysis. Short bursts of intense activity are particularly difficult. Severe muscle cramps and myoglobinuria develop after vigorous exercise.
Variantes genéticas (ClinVar)
162 variantes patogênicas registradas no ClinVar.
Diagnóstico
Os sinais que médicos procuram e os exames que confirmam
Tratamento e manejo
Remédios, cuidados de apoio e o que precisa acompanhar
Onde tratar no SUS
Hospitais de referência no Brasil e o protocolo oficial do SUS (PCDT)
🇧🇷 Atendimento SUS — Doença de armazenamento de glicogênio devida a deficiência de fosfofrutocinase muscular
Centros de Referência SUS
21 centros habilitados pelo SUS para Doença de armazenamento de glicogênio devida a deficiência de fosfofrutocinase muscular
Centros para Doença de armazenamento de glicogênio devida a deficiência de fosfofrutocinase muscular
Detalhes dos centros
Hospital Universitário Prof. Edgard Santos (HUPES)
R. Dr. Augusto Viana, s/n - Canela, Salvador - BA, 40110-060 · CNES 0003808
Serviço de Referência
Hospital de Apoio de Brasília (HAB)
AENW 3 Lote A Setor Noroeste - Plano Piloto, Brasília - DF, 70684-831 · CNES 0010456
Serviço de Referência
Hospital Estadual Infantil e Maternidade Alzir Bernardino Alves (HIABA)
Av. Min. Salgado Filho, 918 - Soteco, Vila Velha - ES, 29106-010 · CNES 6631207
Serviço de Referência
Hospital das Clínicas da UFG
Rua 235 QD. 68 Lote Área, Nº 285, s/nº - Setor Leste Universitário, Goiânia - GO, 74605-050 · CNES 2338424
Serviço de Referência
Hospital das Clínicas da UFMG
Av. Prof. Alfredo Balena, 110 - Santa Efigênia, Belo Horizonte - MG, 30130-100 · CNES 2280167
Serviço de Referência
NUPAD / Faculdade de Medicina UFMG
Av. Prof. Alfredo Balena, 189 - 5 andar - Centro, Belo Horizonte - MG, 30130-100 · CNES 2183226
Serviço de Referência
Hospital Universitário João de Barros Barreto
R. dos Mundurucus, 4487 - Guamá, Belém - PA, 66073-000 · CNES 2337878
Serviço de Referência
Hospital de Clínicas da Universidade Federal de Pernambuco
Av. Prof. Moraes Rego, 1235 - Cidade Universitária, Recife - PE, 50670-901 · CNES 2561492
Atenção Especializada
Instituto de Medicina Integral Prof. Fernando Figueira (IMIP)
R. dos Coelhos, 300 - Boa Vista, Recife - PE, 50070-902 · CNES 0000647
Serviço de Referência
Hospital de Clínicas da UFPR
R. Gen. Carneiro, 181 - Alto da Glória, Curitiba - PR, 80060-900 · CNES 2364980
Serviço de Referência
Hospital Universitário Pedro Ernesto (HUPE-UERJ)
Blvd. 28 de Setembro, 77 - Vila Isabel, Rio de Janeiro - RJ, 20551-030 · CNES 2280221
Serviço de Referência
Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira (IFF/Fiocruz)
Av. Rui Barbosa, 716 - Flamengo, Rio de Janeiro - RJ, 22250-020 · CNES 2269988
Serviço de Referência
Hospital Universitário Onofre Lopes (HUOL)
Av. Nilo Peçanha, 620 - Petrópolis, Natal - RN, 59012-300 · CNES 2408570
Atenção Especializada
Hospital São Lucas da PUCRS
Av. Ipiranga, 6690 - Jardim Botânico, Porto Alegre - RS, 90610-000 · CNES 2232928
Serviço de Referência
Hospital de Clínicas de Porto Alegre (HCPA)
Rua Ramiro Barcelos, 2350 Bloco A - Av. Protásio Alves, 211 - Bloco B e C - Santa Cecília, Porto Alegre - RS, 90035-903 · CNES 2237601
Serviço de Referência
Hospital Universitário da UFSC (HU-UFSC)
R. Profa. Maria Flora Pausewang - Trindade, Florianópolis - SC, 88036-800 · CNES 2560356
Serviço de Referência
Hospital das Clínicas da FMUSP
R. Dr. Ovídio Pires de Campos, 225 - Cerqueira César, São Paulo - SP, 05403-010 · CNES 2077485
Serviço de Referência
Hospital de Clínicas da UNICAMP
R. Vital Brasil, 251 - Cidade Universitária, Campinas - SP, 13083-888 · CNES 2748223
Serviço de Referência
Hospital de Clínicas de Ribeirão Preto (HCRP-USP)
R. Ten. Catão Roxo, 3900 - Vila Monte Alegre, Ribeirão Preto - SP, 14015-010 · CNES 2082187
Serviço de Referência
Instituto da Criança e do Adolescente (ICr-HCFMUSP)
Av. Dr. Enéas Carvalho de Aguiar, 647 - Cerqueira César, São Paulo - SP, 05403-000 · CNES 2081695
Serviço de Referência
UNIFESP / Hospital São Paulo
R. Napoleão de Barros, 715 - Vila Clementino, São Paulo - SP, 04024-002 · CNES 2688689
Serviço de Referência
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
Reporting a Novel Gene Mutation in Glycogen Storage Disease Type VII (Tarui Disease).
A peculiar case of persistent CPK elevation in a person diagnosed with acute HIV: what is behind?
The coexistence of common and rare conditions in a single person may represent a diagnostic challenge. We herein report the case of a young gentleman diagnosed with an acute HIV infection who had a history of myalgias and exercise intolerance and experienced elevated creatinine and phosphokinase enzyme levels. A 24-year-old gentleman was diagnosed with an acute HIV in May 2023 (HIV-RNA > 10.000.000 copies/ml, CD4+ count 417 cell/L) and started same-day combinarion antiretroviral therapy, cART, with darunavir/cobicistat/tenofovir alafenamide/emtricitabine+dolutegravir), switching to dolutegravir/lamivudine once undetectable, 6 weeks after. After 5 months, he was hospitalized with fever, headache, and acute renal failure (creatinine 500 umol/L). Later, CPK peaked at >22,000 mg/dl. He denied chemsex/drug use and had recently started exercising on a regular basis. HIV-RNA was undetectable, cerebrospinal fluid (CSF) examination was unremarkable. cART was temporarily stopped with the normalization of labs. After 20 days, cART was restarted, as well as physical activity, with relapse of the symptoms requiring rehospitalization. Workups for autoimmune and infectious causes were negative. Suspecting drug-related myositis (data on myopathies under integrase inhibitors have been reported), muscle MRI, muscle biopsy, genetic analyses, hair analysis were performed. He tested positive for cocaine and amphetamines. Muscle biopsy showed type 1 fiber atrophy while muscle magnetic resonance imaging was unremarkable. In January 2025, genetic testing came back confirming type VII glycogenosis. This case highlights the diagnostic complexity of rare metabolic disorders, especially when coexisting with acute HIV, continuous medication use and drug exposure. It allows us to highlight the importance of considering rare metabolic disorders as differential diagnoses, as they can mimic systemic illnesses or drug-related effects. Glycogen storage diseases (GSDs) are inherited inborn errors of carbohydrate metabolism that result in abnormal glycogen storage. The onset can range from neonatal life to adulthood, and clinical manifestations result either from a failure to convert glycogen into energy or the toxic accumulation of glycogen. Glycogen is a branched polymer comprised of glucose monomers (see Image. Glycogen, Free Glucose Release, and Glycogen Storage Diseases, Figure 1). After a meal, the plasma glucose level rises, stimulating the storage of the excess in cytoplasmic glycogen. The liver contains the highest percentage of glycogen by weight (about 10%), whereas muscles can store about 2% by weight. Nevertheless, since the total muscle mass is greater than the liver mass, the total mass of glycogen in muscles is about twice that of the liver. When needed, the glycogen polymer can be broken down into glucose monomers and utilized for energy production. Defects in the enzymes and transporters for these processes cause GSDs. An increasing number of GSDs are being identified, but most are very rare. These subtypes are classified numerically in the order of recognition and identification of the enzyme defect causing the disorder. Classification of Glycogen Storage Disorder GSDs that primarily affect the liver include the following: Glycogen synthase-2 deficiency (GSD type 0a). Glucose-6-phosphatase deficiency (GSD type Ia). Glucose-6-phosphate transporter deficiency (GSD type Ib) . Glycogen debrancher deficiency (GSD type III) . Glycogen branching enzyme deficiency (GSD type IV) . Liver phosphorylase deficiency (GSD type VI) . Phosphorylase kinase deficiency (GSD type IXa). GLUT2 deficiency or Fanconi-Bickel disease. GSDs that primarily affect the skeletal muscles include the following: Muscle phosphorylase deficiency (GSD type V). Phosphofructokinase deficiency (GSD type VII). Phosphoglycerate mutase deficiency (GSD type X). Lactate dehydrogenase A deficiency (GSD type XI) . Aldolase A deficiency (GSD type XII); β-enolase deficiency (GSD type XIII). Phosphoglucomutase-1 deficiency (GSD type XIV). GSDs that affect both skeletal and cardiac muscles include the following: Lysosomal acid maltase deficiency (GSD type IIa). Lysosome-associated membrane protein 2 deficiency (GSD type IIb). Glycogenin-1 deficiency (GSD type XV). Muscle glycogen synthase deficiency (GSD type 0b).
Case report: Comprehensive exploration of a novel PFKM mutation in glycogen storage disease Type VII.
Glycogen Storage Disease Type VII (GSD VII) is a rare glycogen metabolism disorder resulting from mutations in the PFKM gene, inherited in an autosomal recessive manner. It is characterized by exercise intolerance, muscle cramps, myoglobinuria, compensatory hemolysis, and later onset de novo myasthenia and mild myopathy, contributing to its clinical heterogeneity and diagnostic challenges. Here, we report a rare case of a 17-year-old Chinese woman exhibiting substantial muscle weakness and compensated hemolysis. Muscle biopsies showed glycogen deposition, and blood tests showed hyperuricemia and significantly elevated creatine kinase. Whole genome sequencing (WGS) and whole exome sequencing (WES) identified two compound heterozygous mutations in the PFKM (NM_000289.6) gene: c.626G>A and c.1376G>A in exons 7 and 15, respectively. According to the clinical presentation, diagnostic examination, and WES results, the patient was finally diagnosed with GSDVII. The discovery of these two new PFKM mutations expands the genetic spectrum, and understanding the clinical manifestations of these mutations is critical to preventing diagnostic delays and timely intervention and treatment.
Rare disease therapeutics: The future of medical genetics in a changing landscape.
Tarui Disease Caused by a Novel PFKM Genetic Variant in a Sub-Saharan African Patient.
Publicações recentes
Spectrum and epidemiology of rare diseases in a Chinese natural population of 14.31 million residents, 2012-2023.
"It's like nursing a butterfly-so delicate, difficult, and unpredictable" - challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study.
Integrating deep phenotyping with genetic analysis: a comprehensive workflow for diagnosis and management of rare bone diseases.
The socioeconomic epidemiology of inherited retinal diseases in Portugal.
Identification of novel homozygous nonsense SLC10A7 variant causing short stature, amelogenesis imperfecta, and skeletal dysplasia with scoliosis and surgical management of spine.
🥉 Relato de caso📚 EuropePMCmostrando 20
A peculiar case of persistent CPK elevation in a person diagnosed with acute HIV: what is behind?
HIV research & clinical practiceReporting a Novel Gene Mutation in Glycogen Storage Disease Type VII (Tarui Disease).
Annals of Indian Academy of NeurologyCase report: Comprehensive exploration of a novel PFKM mutation in glycogen storage disease Type VII.
Frontiers in geneticsRare disease therapeutics: The future of medical genetics in a changing landscape.
Genetics in medicine : official journal of the American College of Medical GeneticsTarui Disease Caused by a Novel PFKM Genetic Variant in a Sub-Saharan African Patient.
Journal of clinical neuromuscular diseaseNovel vectors and approaches for gene therapy in liver diseases.
JHEP reports : innovation in hepatologyHepatocyte-specific glucose-6-phosphatase deficiency disturbs platelet aggregation and decreases blood monocytes upon fasting-induced hypoglycemia.
Molecular metabolismThe potential of a ketogenic diet to minimize effects of the metabolic fault in glycogen storage disease V and VII.
Current opinion in endocrinology, diabetes, and obesityExercise efficiency impairment in metabolic myopathies.
Scientific reportsBeneficial Effects of Ketogenic Diet on Phosphofructokinase Deficiency (Glycogen Storage Disease Type VII).
Frontiers in neurologyUpdate on polyglucosan storage diseases.
Virchows Archiv : an international journal of pathologyMy Diagnostic Odyssey-A Call to Expand Access to Genomic Testing for the Next Generation.
The Hastings Center reportGlucose-free/high-protein diet improves hepatomegaly and exercise intolerance in glycogen storage disease type III mice.
Biochimica et biophysica acta. Molecular basis of diseaseUnique Exercise Lactate Profile in Muscle Phosphofructokinase Deficiency (Tarui Disease); Difference Compared with McArdle Disease.
Frontiers in neurologyDifferential glucose metabolism in mice and humans affected by McArdle disease.
American journal of physiology. Regulatory, integrative and comparative physiologySevere Cardiomyopathy as the Isolated Presenting Feature in an Adult with Late-Onset Pompe Disease: A Case Report.
JIMD reportsGiant Heart of Classical Infantile-Onset Pompe Disease With Mirror Image Dextrocardia.
Circulation. Cardiovascular imagingInfantile form of muscle phosphofructokinase deficiency in a premature neonate.
Pediatrics international : official journal of the Japan Pediatric SocietyCombined aerobic exercise and enzyme replacement therapy rejuvenates the mitochondrial-lysosomal axis and alleviates autophagic blockage in Pompe disease.
Free radical biology & medicineStructures of human phosphofructokinase-1 and atomic basis of cancer-associated mutations.
NatureAssociações
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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.
- Reporting a Novel Gene Mutation in Glycogen Storage Disease Type VII (Tarui Disease).
- A peculiar case of persistent CPK elevation in a person diagnosed with acute HIV: what is behind?
- Case report: Comprehensive exploration of a novel PFKM mutation in glycogen storage disease Type VII.
- Rare disease therapeutics: The future of medical genetics in a changing landscape.Genetics in medicine : official journal of the American College of Medical Genetics· 2023· PMID 36476402mais citado
- Tarui Disease Caused by a Novel PFKM Genetic Variant in a Sub-Saharan African Patient.
- Spectrum and epidemiology of rare diseases in a Chinese natural population of 14.31 million residents, 2012-2023.
- "It's like nursing a butterfly-so delicate, difficult, and unpredictable" - challenges of nurses in caring for patients with epidermolysis bullosa: a qualitative study.
- Integrating deep phenotyping with genetic analysis: a comprehensive workflow for diagnosis and management of rare bone diseases.
- The socioeconomic epidemiology of inherited retinal diseases in Portugal.
- Identification of novel homozygous nonsense SLC10A7 variant causing short stature, amelogenesis imperfecta, and skeletal dysplasia with scoliosis and surgical management of spine.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:371(Orphanet)
- OMIM OMIM:232800(OMIM)
- MONDO:0009295(MONDO)
- GARD:5686(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Artigo Wikipedia(Wikipedia)
- Q1251847(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.
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