Raras
Buscar doenças, sintomas, genes...
Porfiria
ORPHA:738CID-10 · E80.1CID-11 · 5C58.1PCDT · SUSDOENÇA RARA

Porfirias são um grupo de oito doenças metabólicas hereditárias, caracterizadas por sintomas neuroviscerais (que afetam o sistema nervoso e órgãos internos) que aparecem de vez em quando, lesões na pele, ou pela combinação dos dois.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Porfirias são um grupo de oito doenças metabólicas hereditárias, caracterizadas por sintomas neuroviscerais (que afetam o sistema nervoso e órgãos internos) que aparecem de vez em quando, lesões na pele, ou pela combinação dos dois.

Pesquisas ativas
12 ensaios
67 total registrados no ClinicalTrials.gov
Publicações científicas
8.307 artigos
Último publicado: 2026 Apr 16

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
1-9 / 100 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
5.25
Worldwide
Início
All ages
🏥
SUS: Cobertura parcialScore: 50%
PCDT disponívelCentros em: PA, PR, SC, RS, ES +8CID-10: E80.1
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
24 sintomas
🧬
Pele e cabelo
21 sintomas
🫃
Digestivo
18 sintomas
🫘
Rins
14 sintomas
👁️
Olhos
10 sintomas
🦴
Ossos e articulações
9 sintomas

+ 87 sintomas em outras categorias

Características mais comuns

Hidropsia fetal não imune
Fraqueza muscular de membro
Déficit motor funcional
Distúrbio da marcha
Doença mieloproliferativa
Dependência de ventilador com incapacidade de desmame
205sintomas
Sem dados (205)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 205 características clínicas mais associadas, ordenadas por frequência.

Hidropsia fetal não imuneNonimmune hydrops fetalis
Fraqueza muscular de membroLimb muscle weakness
Déficit motor funcionalFunctional motor deficit
Distúrbio da marchaGait disturbance
Doença mieloproliferativaMyeloproliferative disorder

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico8.307PubMed
Últimos 10 anos200publicações
Pico2025136 papers
Linha do tempo
2026Hoje · 2026🧪 1987Primeiro ensaio clínico📈 2025Ano 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

11 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Autosomal recessive.

PPOXProtoporphyrinogen oxidaseDisease-causing germline mutation(s) inModerado
FUNÇÃO

Catalyzes the 6-electron oxidation of protoporphyrinogen-IX to form protoporphyrin-IX

LOCALIZAÇÃO

Mitochondrion inner membrane

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Variegate porphyria

A form of porphyria. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. Variegate porphyria is an acute hepatic form characterized by partial reduction of protoporphyrinogen oxidase activity, increased photosensitivity, skin blistering and scarring of sun-exposed areas, skin hyperpigmentation, abdominal pain, and neuropsychiatric symptoms. High fecal levels of protoporphyrin and coproporphyrin, increased urine uroporphyrins and iron overload are typical markers of the disease. Inheritance is autosomal dominant with incomplete penetrance.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Cervix Endocervix
40.6 TPM
Ovário
35.9 TPM
Útero
34.6 TPM
Tireoide
34.6 TPM
Pituitária
33.3 TPM
OUTRAS DOENÇAS (2)
variegate porphyria, childhood-onsetvariegate porphyria
HGNC:9280UniProt:P50336
GATA1Erythroid transcription factorCandidate gene tested inAltamente restrito
FUNÇÃO

Transcriptional activator or repressor which serves as a general switch factor for erythroid development (PubMed:35030251). It binds to DNA sites with the consensus sequence 5'-[AT]GATA[AG]-3' within regulatory regions of globin genes and of other genes expressed in erythroid cells. Activates the transcription of genes involved in erythroid differentiation of K562 erythroleukemia cells, including HBB, HBG1/2, ALAS2 and HMBS (PubMed:24245781)

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (3)
RUNX1 regulates genes involved in megakaryocyte differentiation and platelet functionRUNX1 regulates transcription of genes involved in differentiation of HSCsFactors involved in megakaryocyte development and platelet production
MECANISMO DE DOENÇA

X-linked dyserythropoietic anemia and thrombocytopenia

Disorder characterized by erythrocytes with abnormal size and shape, and paucity of platelets in peripheral blood. The bone marrow contains abundant and abnormally small megakaryocytes.

EXPRESSÃO TECIDUAL(Tecido-específico)
Sangue
25.8 TPM
Pulmão
3.7 TPM
Testículo
3.6 TPM
Baço
1.9 TPM
Pituitária
0.8 TPM
OUTRAS DOENÇAS (10)
transient myeloproliferative syndromethrombocytopenia, X-linked, with or without dyserythropoietic anemiahemolytic anemia due to erythrocyte adenosine deaminase overproductionX-linked dyserythropoetic anemia with abnormal platelets and neutropenia
HGNC:4170UniProt:P15976
HFEHereditary hemochromatosis proteinCandidate gene tested inTolerante
FUNÇÃO

Binds to transferrin receptor (TFR) and reduces its affinity for iron-loaded transferrin

LOCALIZAÇÃO

Cell membrane

VIAS BIOLÓGICAS (1)
Transferrin endocytosis and recycling
MECANISMO DE DOENÇA

Hemochromatosis 1

A disorder of iron metabolism characterized by iron overload. Excess iron is deposited in a variety of organs leading to their failure, and resulting in serious illnesses including cirrhosis, hepatomas, diabetes, cardiomyopathy, arthritis, and hypogonadotropic hypogonadism. Severe effects of the disease usually do not appear until after decades of progressive iron loading.

EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
15.7 TPM
Glândula adrenal
8.8 TPM
Baço
7.8 TPM
Aorta
6.6 TPM
Cervix Endocervix
6.5 TPM
OUTRAS DOENÇAS (6)
hemochromatosis type 1sporadic porphyria cutanea tardafamilial porphyria cutanea tardaobsolete symptomatic form of hemochromatosis type 1
HGNC:4886UniProt:Q30201
ALADDelta-aminolevulinic acid dehydrataseDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes an early step in the biosynthesis of tetrapyrroles. Binds two molecules of 5-aminolevulinate per subunit, each at a distinct site, and catalyzes their condensation to form porphobilinogen

LOCALIZAÇÃO

Cytoplasm, cytosol

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Acute hepatic porphyria

A form of porphyria. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. AHP is characterized by attacks of gastrointestinal disturbances, abdominal colic, paralyses and peripheral neuropathy. Most attacks are precipitated by drugs, alcohol, caloric deprivation, infections, or endocrine factors.

OUTRAS DOENÇAS (1)
porphyria due to ALA dehydratase deficiency
HGNC:395UniProt:P13716
CLPXATP-dependent clpX-like chaperone, mitochondrialDisease-causing germline mutation(s) inRestrito
FUNÇÃO

ATP-dependent chaperone that functions as an unfoldase. As part of the ClpXP protease complex, it recognizes specific protein substrates, unfolds them using energy derived from ATP hydrolysis, and then translocates them to the proteolytic subunit (CLPP) of the ClpXP complex for degradation (PubMed:11923310, PubMed:22710082, PubMed:28874591). Thanks to its chaperone activity, it also functions in the incorporation of the pyridoxal phosphate cofactor into 5-aminolevulinate synthase, thereby activa

LOCALIZAÇÃO

MitochondrionMitochondrion matrix, mitochondrion nucleoid

VIAS BIOLÓGICAS (1)
Mitochondrial protein degradation
MECANISMO DE DOENÇA

Protoporphyria, erythropoietic, 2

An autosomal dominant form of porphyria with onset in infancy. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. Erythropoietic protoporphyria is marked by excessive protoporphyrin in erythrocytes, plasma, liver and feces, and by widely varying photosensitive skin changes ranging from a burning or pruritic sensation to erythema, edema and wheals.

OUTRAS DOENÇAS (1)
protoporphyria, erythropoietic, 2
HGNC:HGNC:2088UniProt:O76031
CPOXOxygen-dependent coproporphyrinogen-III oxidase, mitochondrialDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the aerobic oxidative decarboxylation of propionate groups of rings A and B of coproporphyrinogen-III to yield the vinyl groups in protoporphyrinogen-IX and participates to the sixth step in the heme biosynthetic pathway

LOCALIZAÇÃO

Mitochondrion intermembrane space

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Hereditary coproporphyria

A form of porphyria. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. Hereditary coproporphyria is an acute hepatic porphyria characterized by skin photosensitivity, attacks of abdominal pain, neurological disturbances, and psychiatric symptoms. Most attacks are precipitated by drugs, alcohol, caloric deprivation, infections, or endocrine factors. Hereditary coproporphyria is biochemically characterized by overexcretion of coproporphyrin III in the urine and in the feces.

VIAS REACTOME (1)
OUTRAS DOENÇAS (2)
hereditary coproporphyriaharderoporphyria
HGNC:2321UniProt:P36551
HMBSPorphobilinogen deaminaseDisease-causing germline mutation(s) inRestrito
FUNÇÃO

As part of the heme biosynthetic pathway, catalyzes the sequential polymerization of four molecules of porphobilinogen to form hydroxymethylbilane, also known as preuroporphyrinogen (PubMed:18004775, PubMed:18936296, PubMed:19138865, PubMed:23815679). Catalysis begins with the assembly of the dipyrromethane cofactor by the apoenzyme from two molecules of porphobilinogen or from preuroporphyrinogen. The covalently linked cofactor acts as a primer, around which the tetrapyrrole product is assemble

LOCALIZAÇÃO

Cytoplasm, cytosol

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Acute intermittent porphyria

A form of porphyria. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. AIP is an autosomal dominant form of hepatic porphyria characterized by attacks of gastrointestinal disturbances, abdominal colic, with neurological dysfunctions, hypertension, tachycardia and peripheral neuropathy. Most attacks are precipitated by drugs, alcohol, caloric deprivation, infections, or endocrine factors.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Linfócitos
26.1 TPM
Fibroblastos
22.1 TPM
Sangue
15.6 TPM
Baço
15.2 TPM
Tireoide
14.1 TPM
OUTRAS DOENÇAS (3)
leukoencephalopathy, porphyria-relatedacute intermittent porphyriaencephalopathy, porphyria-related
HGNC:4982UniProt:P08397
UROSUroporphyrinogen-III synthaseDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes cyclization of the linear tetrapyrrole, hydroxymethylbilane, to the macrocyclic uroporphyrinogen III, the branch point for the various sub-pathways leading to the wide diversity of porphyrins (PubMed:11689424, PubMed:18004775). Porphyrins act as cofactors for a multitude of enzymes that perform a variety of processes within the cell such as methionine synthesis (vitamin B12) or oxygen transport (heme) (PubMed:11689424, PubMed:18004775)

LOCALIZAÇÃO

Cytoplasm, cytosol

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Congenital erythropoietic porphyria

Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. The manifestations of CEP are heterogeneous, ranging from nonimmune hydrops fetalis due to severe hemolytic anemia in utero to milder, later onset forms, which have only skin lesions due to cutaneous photosensitivity in adult life. The deficiency in UROS activity results in the non-enzymatic conversion of hydroxymethylbilane (HMB) into the uroporphyrinogen-I isomer.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Brain Nucleus accumbens basal ganglia
24.6 TPM
Córtex cerebral
23.3 TPM
Brain Frontal Cortex BA9
22.9 TPM
Brain Caudate basal ganglia
22.0 TPM
Cérebro - Amígdala
21.3 TPM
OUTRAS DOENÇAS (1)
cutaneous porphyria
HGNC:12592UniProt:P10746
ALAS25-aminolevulinate synthase, erythroid-specific, mitochondrialDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Catalyzes the pyridoxal 5'-phosphate (PLP)-dependent condensation of succinyl-CoA and glycine to form aminolevulinic acid (ALA), with CoA and CO2 as by-products (PubMed:14643893, PubMed:21252495, PubMed:21309041, PubMed:21653323, PubMed:32499479, PubMed:34492704). Contributes significantly to heme formation during erythropoiesis (PubMed:2050125) Catalyzes the pyridoxal 5'-phosphate (PLP)-dependent condensation of succinyl-CoA and glycine to form aminolevulinic acid (ALA), with CoA and CO2 as by-

LOCALIZAÇÃO

Mitochondrion inner membrane

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Anemia, sideroblastic, 1

A form of sideroblastic anemia that shows a variable hematologic response to pharmacologic doses of pyridoxine. Sideroblastic anemia is characterized by anemia of varying severity, hypochromic peripheral erythrocytes, systemic iron overload secondary to chronic ineffective erythropoiesis, and the presence of bone marrow ringed sideroblasts. Sideroblasts are characterized by iron-loaded mitochondria clustered around the nucleus.

VIAS REACTOME (1)
OUTRAS DOENÇAS (2)
X-linked erythropoietic protoporphyriaX-linked sideroblastic anemia 1
HGNC:397UniProt:P22557
FECHFerrochelatase, mitochondrialDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the ferrous insertion into protoporphyrin IX and participates in the terminal step in the heme biosynthetic pathway

LOCALIZAÇÃO

Mitochondrion inner membrane

VIAS BIOLÓGICAS (2)
Heme biosynthesisMitochondrial protein degradation
MECANISMO DE DOENÇA

Protoporphyria, erythropoietic, 1

An autosomal recessive form of porphyria with onset usually before age 10 years. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. Erythropoietic protoporphyria is marked by excessive protoporphyrin in erythrocytes, plasma, liver and feces, and by widely varying photosensitive skin changes ranging from a burning or pruritic sensation to erythema, edema and wheals.

EXPRESSÃO TECIDUAL(Ubíquo)
Fibroblastos
22.7 TPM
Rim - Medula
21.6 TPM
Glândula adrenal
18.7 TPM
Linfócitos
18.6 TPM
Músculo esquelético
18.3 TPM
OUTRAS DOENÇAS (2)
protoporphyria, erythropoietic, 1autosomal erythropoietic protoporphyria
HGNC:3647UniProt:P22830
URODUroporphyrinogen decarboxylaseDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the sequential decarboxylation of the four acetate side chains of uroporphyrinogen to form coproporphyrinogen and participates in the fifth step in the heme biosynthetic pathway (PubMed:11069625, PubMed:11719352, PubMed:14633982, PubMed:18004775, PubMed:21668429). Isomer I or isomer III of uroporphyrinogen may serve as substrate, but only coproporphyrinogen III can ultimately be converted to heme (PubMed:11069625, PubMed:11719352, PubMed:14633982, PubMed:21668429). In vitro also decarb

LOCALIZAÇÃO

Cytoplasm, cytosol

VIAS BIOLÓGICAS (1)
Heme biosynthesis
MECANISMO DE DOENÇA

Familial porphyria cutanea tarda

A form of porphyria. Porphyrias are inherited defects in the biosynthesis of heme, resulting in the accumulation and increased excretion of porphyrins or porphyrin precursors. They are classified as erythropoietic or hepatic, depending on whether the enzyme deficiency occurs in red blood cells or in the liver. Familial porphyria cutanea tarda is an autosomal dominant disorder characterized by light-sensitive dermatitis, with onset in later life. It is associated with the excretion of large amounts of uroporphyrin in the urine. Iron overload is often present in association with varying degrees of liver damage.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Glândula adrenal
100.8 TPM
Fibroblastos
74.4 TPM
Útero
72.0 TPM
Tireoide
69.1 TPM
Ovário
65.2 TPM
OUTRAS DOENÇAS (2)
familial porphyria cutanea tardahepatoerythropoietic porphyria
HGNC:12591UniProt:P06132

Medicamentos aprovados (FDA)

1 medicamento encontrado nos registros da FDA americana.

💊 Chlorpromazine Hydrochloride (CHLORPROMAZINE HYDROCHLORIDE)
Ver no DailyMed/FDA

Variantes genéticas (ClinVar)

443 variantes patogênicas registradas no ClinVar.

🧬 PPOX: NM_001122764.3(PPOX):c.1098+2T>A ()
🧬 PPOX: GRCh37/hg19 1q21.1-44(chr1:143932350-249224684)x3 ()
🧬 PPOX: NM_001122764.3(PPOX):c.884T>C (p.Leu295Pro) ()
🧬 PPOX: NM_001122764.3(PPOX):c.383G>A (p.Trp128Ter) ()
🧬 PPOX: NM_001122764.3(PPOX):c.917T>C (p.Leu306Pro) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 346 variantes classificadas pelo ClinVar.

190
156
Patogênica (54.9%)
VUS (45.1%)
VARIANTES MAIS SIGNIFICATIVAS
PPOX: NM_001122764.3(PPOX):c.917T>C (p.Leu306Pro) [Likely pathogenic]
UROD: NM_000374.5(UROD):c.133+2_133+4del [Likely pathogenic]
UROD: NM_000374.5(UROD):c.775-2del [Likely pathogenic]
HMBS: NM_000190.4(HMBS):c.33+1G>C [Pathogenic]
UROD: NM_000374.5(UROD):c.943-14_944del [Likely pathogenic]

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 28
1Fase 11
·Pré-clínico8
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 20 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Porfiria

Centros de Referência SUS

21 centros habilitados pelo SUS para Porfiria

Centros para Porfiria

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

Rota
Anomalias CongênitasErros Inatos do Metabolismo

Hospital de Apoio de Brasília (HAB)

AENW 3 Lote A Setor Noroeste - Plano Piloto, Brasília - DF, 70684-831 · CNES 0010456

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

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

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

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

Rota
Anomalias CongênitasErros Inatos do Metabolismo

Hospital das Clínicas da UFMG

Av. Prof. Alfredo Balena, 110 - Santa Efigênia, Belo Horizonte - MG, 30130-100 · CNES 2280167

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

NUPAD / Faculdade de Medicina UFMG

Av. Prof. Alfredo Balena, 189 - 5 andar - Centro, Belo Horizonte - MG, 30130-100 · CNES 2183226

Serviço de Referência

Rota
Erros Inatos do Metabolismo

Hospital Universitário João de Barros Barreto

R. dos Mundurucus, 4487 - Guamá, Belém - PA, 66073-000 · CNES 2337878

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital de Clínicas da Universidade Federal de Pernambuco

Av. Prof. Moraes Rego, 1235 - Cidade Universitária, Recife - PE, 50670-901 · CNES 2561492

Atenção Especializada

Rota
Erros Inatos do Metabolismo

Instituto de Medicina Integral Prof. Fernando Figueira (IMIP)

R. dos Coelhos, 300 - Boa Vista, Recife - PE, 50070-902 · CNES 0000647

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital de Clínicas da UFPR

R. Gen. Carneiro, 181 - Alto da Glória, Curitiba - PR, 80060-900 · CNES 2364980

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital Universitário Pedro Ernesto (HUPE-UERJ)

Blvd. 28 de Setembro, 77 - Vila Isabel, Rio de Janeiro - RJ, 20551-030 · CNES 2280221

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do Metabolismo

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

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital Universitário Onofre Lopes (HUOL)

Av. Nilo Peçanha, 620 - Petrópolis, Natal - RN, 59012-300 · CNES 2408570

Atenção Especializada

Rota
Erros Inatos do Metabolismo

Hospital São Lucas da PUCRS

Av. Ipiranga, 6690 - Jardim Botânico, Porto Alegre - RS, 90610-000 · CNES 2232928

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do Metabolismo

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

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital Universitário da UFSC (HU-UFSC)

R. Profa. Maria Flora Pausewang - Trindade, Florianópolis - SC, 88036-800 · CNES 2560356

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do Metabolismo

Hospital das Clínicas da FMUSP

R. Dr. Ovídio Pires de Campos, 225 - Cerqueira César, São Paulo - SP, 05403-010 · CNES 2077485

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

Hospital de Clínicas da UNICAMP

R. Vital Brasil, 251 - Cidade Universitária, Campinas - SP, 13083-888 · CNES 2748223

Serviço de Referência

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

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

Rota
Anomalias CongênitasErros Inatos do MetabolismoDeficiência Intelectual

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

Rota
Erros Inatos do Metabolismo

UNIFESP / Hospital São Paulo

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Publicações mais relevantes

📖Melhor nível de evidência: Revisão
Timeline de publicações
1.296 papers (10 anos)

Mostrando amostra de 200 publicações de um total de 1.296

#1

Reference intervals for fasting insulin and insulin-related indices in healthy adults: a cross-sectional study in Gandaki Province, Nepal.

BMJ open2026 Mar 18

Accurate assessment of insulin resistance, sensitivity and β-cell function is essential for early detection and management of metabolic disorders. However, reference intervals (RIs) commonly used in Nepal have been adapted from Western populations, which may not accurately reflect local physiological characteristics. Thus, this study aimed to establish population-specific RIs for fasting insulin and key insulin-related indices using a direct priori method in healthy adults from Gandaki Province, Nepal. This cross-sectional study recruited 135 healthy adults (20-69 years, body mass index 18.5-24.9 kg/m²) representing different districts of Gandaki Province, Nepal. Fasting blood samples were analysed for glucose, insulin and lipids using standardised assays. Insulin was measured using the chemiluminescence immunoassay method. Nineteen different insulin-derived indices (Homeostasis Model Assessment 1 of Insulin Resistance (HOMA1-IR), Homeostasis Model Assessment 2 of Insulin Resistance (HOMA2-IR), Homeostasis Model Assessment for Triglycerides, Fasting Insulin to Glucose Ratio, Fasting Insulin Resistance Index, Metabolic Score for Insulin Resistance (METS-IR), InsuTAG, HOMA1-%S, HOMA2-%S, Quantitative Insulin Sensitivity Check Index (QUICKI), McAuley, Bennett, Raynaud, Glucose-to-Insulin Ratio, Fasting Insulin Sensitivity Index, Single Point Insulin Sensitivity Estimator (SPISE), reciprocal insulin, HOMA1-%B and HOMA2-%B) were calculated. Non-parametric 95% double-sided RIs (2.5th-97.5th percentiles) were established following outlier removal per Clinical and Laboratory Standards Institute-International Federation of Clinical Chemistry and Laboratory Medicine EP28-A3c guidelines. The RI for fasting insulin was 2.63-14.56 µIU/mL (median 7.69 µIU/mL). Among the 19 mathematically correlated insulin-derived indices which are calculated from core measurements (fasting serum insulin and glucose), consistent patterns emerged across functional categories. Insulin resistance indices (HOMA1-IR: 0.56-3.50; HOMA2-IR: 0.30-1.70; METS-IR: 25.14-38.94) exhibited concordant right-skewed distributions with elevated upper limits. Conversely, insulin sensitivity indices (QUICKI: 0.32-0.42; HOMA2-%S: 58.83-233.20; SPISE: 5.75-10.86) demonstrated inverse, left-skewed patterns. Beta-cell function indices (HOMA1-%B: 0.54-322.21; HOMA2-%β: 40.74-159.52) also exhibited right skewed characteristics and revealed wide interindividual variability, reflecting preserved pancreatic reserve despite varying insulin resistance. Composite indices incorporating lipid parameters showed broader ranges, capturing additional metabolic heterogeneity. This is the first study to define the RIs of fasting insulin and a spectrum of insulin derived indices in a Nepalese population. These findings offer a valuable framework for early detection and management of metabolic disorders in South Asian populations.

#2

Liver graft as a 'Trojan horse': manifestation of variegate porphyria in an 11-month-old girl with biliary atresia after living-related liver transplantation.

Gastroenterology report2026 Feb

We report on an infant girl with biliary atresia, who, at the age of 6 months, received a living-related liver transplantation (LRLT), (segments II/III) from her 37-year-old healthy mother. Five months after LRLT, the child developed skin lesions on sunlight exposed skin areas. Based on plasma fluorescence scanning, biochemical findings and DNA testing variegate porphyria (VP) was diagnosed in the girl. In this remarkable case hepatic heme synthesis was induced in the transplanted liver through medication (metamizole), stress and infection (cholangitis), unmasking previously undiscovered partial enzyme deficiency of PPOX. LRLT with subsequent manifestation of heterozygous VP in very early childhood has not been described hitherto. Our report will increase awareness of "rare risks" for "rare diseases" in liver transplantation.

#3

Hematopoietic stem cell transplantation for erythropoietic porphyria-induced acute liver failure: a case report and literature review.

Clinics and research in hepatology and gastroenterology2026 Mar 10

Protoporphyrias are rare genetic disorders in heme biosynthesis, causing protoporphyrin IX accumulation with progressive liver injury. Liver transplantation has traditionally treated protoporphyria-induced liver injury but does not correct the underlying hematopoietic defect. We present a 16-year-old male with painful cutaneous photosensitivity who developed cholestatic liver dysfunction and severe abdominal pain. After plasmapheresis, red blood cell (RBC) transfusions, and intravenous hemin, he had transient improvement and subsequently underwent hematopoietic stem cell transplantation (HSCT) without liver transplantation, which normalized his protoporphyrin levels, liver function, and symptoms. This case underscores HSCT as a disease-modifying therapy that may prevent liver transplantation when performed before irreversible hepatic damage.

#4

CladeOScope-GSA: Revealing Evolutionary Associations Across Gene Sets.

International journal of molecular sciences2026 Feb 01

Deciphering gene and protein functions and interactions remains a core challenge in biology and medicine. Gene set analysis and multi-omics tools are widely used to interpret gene lists; however, they often overlook shared evolutionary patterns among genes. These conservation and loss patterns, shaped by billions of years of evolutionary pressure, can uncover co-evolutionary signals within gene sets, yet they remain frequently underexplored. In this study, we apply normalized phylogenetic profiling (NPP) across 1905 eukaryotic species and introduce CladeOScope-GSA, a tool for analyzing user-defined gene sets. CladeOScope-GSA uncovers common signatures of conservation, revealing whether a gene set evolves as a cohesive unit or as distinct co-evolving submodules. By tracing gene set origins, diversification, and shared evolutionary histories, the tool identifies the structural organization and key components of gene networks, exposing functional similarities, phenotypic associations, and broader biological relationships. We demonstrate its utility through two well-characterized cases: the porphyria-related pathway and the dynein gene family. In both, CladeOScope-GSA recapitulates known functional substructures and uncovers previously unrecognized evolutionary insights, underscoring its value for advancing our understanding of gene function and pathway evolution on a broad scale.

#5

Aminolevulinate inhibition of human coproporphyrinogen oxidase clarifies coproporphyrin III accumulation in porphyrias.

Bioscience reports2026 Mar 18

Porphyrias are inherited or acquired disorders of heme biosynthesis characterized by heme deficiency and accumulation of toxic intermediates. In δ-aminolevulinic acid dehydratase deficiency porphyria (ALADP), patients consistently present elevated urinary δ-aminolevulinic acid (δ-ALA) and coproporphyrin III (COPRO III), yet the mechanistic basis of COPRO III accumulation remains unclear. This metabolic disturbance is also observed in the porphyria-like associated crises in hereditary tyrosinemia type I (HT1). Here, we investigated the effects of δ-ALA, COPRO III, and lead (Pb2+) on human coproporphyrinogen oxidase (CPOX), a key mitochondrial enzyme in heme biosynthesis. Using purified recombinant CPOX, we show that COPRO III binds with high affinity (KD ≈ 2.1 μM) and acts as a competitive inhibitor, while δ-ALA inhibits CPOX at millimolar concentrations through a non-competitive, likely covalent, mechanism. In vivo, δ-ALA accumulation in an HT1 mouse model led to hepatic COPRO III buildup, consistent with our in vitro findings and supporting a synergistic inhibition model in which δ-ALA promotes secondary COPRO III accumulation that further impairs CPOX. Additionally, Pb2+ was found to inactivate CPOX, likely through oxidative damage, providing a molecular explanation for enzyme dysfunction in porphyrin abnormalities in response to lead intoxication. Together, these results identify multiple metabolite- and toxin-dependent mechanisms that converge on CPOX inhibition, offering new insights into the pathophysiology of ALADP, among other porphyrias, lead intoxication, and HT1.

Publicações recentes

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📚 EuropePMC6.246 artigos no totalmostrando 195

2026

Clinical Practice Guidelines for the Management of Porphyrias in Japan: Secondary Publication (English Translation).

The Journal of dermatology
2026

Reference intervals for fasting insulin and insulin-related indices in healthy adults: a cross-sectional study in Gandaki Province, Nepal.

BMJ open
2026

Acute hepatic porphyria masquerading as familial Mediterranean fever: results of a cross-sectional porphobilinogen screening.

Orphanet journal of rare diseases
2026

Hematopoietic stem cell transplantation in pediatric congenital erythropoietic porphyria: a French retrospective multicenter registry study on behalf of the Francophone Society of Bone Marrow Transplantation and Cellular Therapy (SFGM-TC).

Bone marrow transplantation
2026

Liver graft as a 'Trojan horse': manifestation of variegate porphyria in an 11-month-old girl with biliary atresia after living-related liver transplantation.

Gastroenterology report
2026

A type 2 diabetes patient with three years of persistent abdominal pain: the culprit was variegate porphyria-a case report.

Frontiers in endocrinology
2026

Result harmonization in medical laboratories: accomplishments and challenges.

Clinical chemistry and laboratory medicine
2026

Recommendations for establishing metrological traceability for in vitro diagnostic measurement procedures intended to be used for whole blood samples.

Clinica chimica acta; international journal of clinical chemistry
2026

Hematopoietic stem cell transplantation for erythropoietic porphyria-induced acute liver failure: a case report and literature review.

Clinics and research in hepatology and gastroenterology
2026

Considerations and pragmatic strategies for implementation of point of care testing for high sensitivity cardiac troponin into the acute care setting.

Clinical chemistry and laboratory medicine
2026

When Recurrent Pancreatitis Is Not Pancreatitis: Cyclic Vomiting Syndrome Masquerading as Acute Pancreatitis in a Young Adult.

Cureus
2026

Probable Acute Hepatic Porphyria Diagnosed Using Urinary Porphyrin Spectrophotometry in a Resource-Limited Setting: A Case Report.

Cureus
2026

Biallelic pathogenic hydroxymethylbilane synthase gene variants of a neurodegenerative disorder with progressive cystic leukoencephalopathy: a case report.

Journal of medical case reports
2026

Congenital Erythropoietic Porphyria with Persistent Severe Biochemical Abnormalities and a Non-Mutilating Clinical Course: A Case Report.

Reports (MDPI)
2026

Management of porphyria-like syndrome in tyrosinemia type 1.

Journal of pediatric endocrinology &amp; metabolism : JPEM
2026

Hyponatremia and Abdominal Pain: A Case Report of Acute Hepatic Porphyria.

Cureus
2026

CladeOScope-GSA: Revealing Evolutionary Associations Across Gene Sets.

International journal of molecular sciences
2026

Aminolevulinate inhibition of human coproporphyrinogen oxidase clarifies coproporphyrin III accumulation in porphyrias.

Bioscience reports
2026

From photosensitivity to autoimmunity: the role of AI metabolomics in PCT-celiac disease overlap.

Annals of medicine and surgery (2012)
2026

Laparoscopic bariatric surgery versus any non-surgical intervention for adolescents or adults with obesity: protocol for a systematic review with meta-analysis and trial sequential analysis of randomised clinical trials.

BMJ open
2026

Hepatic Porphyria Presenting with Persistent Abdominal Pain: A Case Report and Literature Review.

Iranian journal of pathology
2026

Predictive value of stress hyperglycaemia ratio and haemoglobin glycation index for mortality risks in critically ill patients: a comparative retrospective analysis of the MIMIC-IV database using machine learning-based predictive modelling.

BMJ open
2026

SIADH as an Underrecognized Manifestation of Porphyria-like Crises in Hereditary Tyrosinemia Type 1: Clinical and Pathophysiological Insights.

International journal of molecular sciences
2026

Tolvaptan: a potential rescue therapy for SIADH with refractory hyponatremia associated with acute intermittent porphyria.

Journal of pediatric endocrinology &amp; metabolism : JPEM
2026

From darkness to light: Case report on afamelanotide-treatment in a 9-year-old child with erythropoietic protoporphyria.

JAAD case reports
2026

Genetic traits and diet triggering the iron-induced hepatic model of the idiopathic disorder sporadic porphyria cutanea tarda.

Free radical biology &amp; medicine
2026

Porphyria Diagnostics Part 3: Biochemical Protocols for the Diagnosis of Porphyrias.

Current protocols
2026

The ketogenic diet is not for everyone: contraindications, side effects, and drug interactions.

Annals of medicine
2026

Visible Light Protection Strategies for Diverse Populations.

Dermatology and therapy
2026

The Epigenetic Angle in the Precision Medicine Era for Blood Disorder Advancements.

Sub-cellular biochemistry
2025

New pharmacotherapies for the erythropoietic protoporphyrias: an analysis of trial protocols from a patient perspective.

Orphanet journal of rare diseases
2025

Claw hands in acute intermittent porphyria.

Oxford medical case reports
2025

Protocol for a non-randomised stepped-wedge pilot trial for 'Nra:gi Ya:yun' (very good foods): a co-designed type 2 diabetes and metabolic syndrome initiative with Aboriginal people living on Ngarrindjeri Ruwe.

BMJ open
2025

Paraneoplastic hypoglycemia caused by hepatocarcinoma in a patient with acute intermittent porphyria.

Journal of gastrointestinal and liver diseases : JGLD
2026

Congenital Erythropoietic Porphyria in a Neonate: Utility of Rapid Whole Genome Sequencing - A Case Report.

Neonatology
2025

Rbm38 binds Fech pre-mRNA to prevent anemia and porphyria.

Blood
2026

The Case of a 37-Year-Old Woman Presenting With Subacute Weakness and Paresthesias.

Annals of clinical and translational neurology
2026

Bitopertin shows efficacy in patients with erythropoietic protoporphyria: Results from the randomized, double-blind, placebo-controlled AURORA trial.

Journal of the American Academy of Dermatology
2025

Psychiatric Presentation of Hereditary Coproporphyria with Coproporphyrinogen Oxidase Gene Mutation c.734 C>T: A Case Report.

Noro psikiyatri arsivi
2026

Liver Transplantation and Other Hepatically Directed Therapies Do Not Change the Biochemical Phenotype nor Halt Progression of Leukodystrophy due to Biallelic HMBS Variants: A Case Report.

JIMD reports
2025

[A case of severe liver injury associated with erythropoietic protoporphyria].

Nihon Shokakibyo Gakkai zasshi = The Japanese journal of gastro-enterology
2025

Recommendations for recognizing and diagnosing Acute Hepatic Porphyria in atypical patient populations.

Orphanet journal of rare diseases
2025

Porphyria cutanea tarda in children: epidemiological study of a rare disease in Argentina.

Medicina
2025

The challenge of persistent physical symptoms.

The British journal of general practice : the journal of the Royal College of General Practitioners
2025

A Curious Case of Abdominal Pain with Reset Osmostat and Rhabdomyolysis.

The Journal of the Association of Physicians of India
2025

Acute hepatic porphyrias.

Porto biomedical journal
2025

Acute Necrotizing Pancreatitis Secondary to Acute Intermittent Porphyria: A Rare Clinical Association.

ACG case reports journal
2026

New cases of δ-aminolevulinic acid dehydratase deficiency: Functional insights into gene variants using an innovative mouse liver model.

Journal of internal medicine
2025

The Changing Face of Academic Laboratory Medicine-A Decade Later and Beyond.

Clinical chemistry
2025

Acute Protoporphyric Hepatopathy as the Initial Presentation of Erythropoietic Protoporphyria in Adulthood.

ACG case reports journal
2025

Epidemiological characteristics and natural history of porphyria - a twenty-year population-based analysis in Taiwan.

Orphanet journal of rare diseases
2025

Porphyrias: Pathophysiology and clinical management recommendations for hepatologists.

Hepatology communications
2025

Common features of rare disease patients in the emergency department: a systematised literature review.

Orphanet journal of rare diseases
2025

Acute Intermittent Porphyria With Epilepsy as the Initial Symptom and Posterior Reversible Encephalopathy Syndrome: A Case Report.

Case reports in neurological medicine
2026

Responses to 'Responses to "red fluorescence in porphyria cutanea tarda"'.

Journal of the European Academy of Dermatology and Venereology : JEADV
2026

Stability of plasma and erythrocyte porphyrins: implications for diagnosis and monitoring of erythropoietic protoporphyria.

Journal of clinical pathology
2025

Neurovisceral Syndrome in a Patient with Monoclonal Gammopathy of Undetermined Significance: A Confirmed Case of Variegate Porphyria.

Cureus
2025

[Two siblings with congenital erythropoietic porphyria in one family: case report and literature review].

Zhongguo dang dai er ke za zhi = Chinese journal of contemporary pediatrics
2025

Persistent Beetroot Colored Urine in a Three-Year-Old Child: A Case Report.

Clinical case reports
2025

Pediatric Liver Diseases: Next-Generation Therapies.

Clinics in liver disease
2025

HFE related acute porphyria-like attack induced by severe influenza A pneumonia.

Clinical biochemistry
2025

Late recurrence of congenital erythropoietic porphyria symptoms after initial remission post-bone marrow transplant.

Indian journal of dermatology, venereology and leprology
2026

Responses to 'Red fluorescence in porphyria cutanea tarda'.

Journal of the European Academy of Dermatology and Venereology : JEADV
2025

IgA-autoantibodies to Histone 2B and alcohol-associated liver disease (ALD): Another drop in the ocean of potential useful biomarkers.

Digestive and liver disease : official journal of the Italian Society of Gastroenterology and the Italian Association for the Study of the Liver
2025

Impact of diabetes and obesity on patient outcomes in alcohol-associated liver disease: Analysis of 3 databases.

Digestive and liver disease : official journal of the Italian Society of Gastroenterology and the Italian Association for the Study of the Liver
2025

Acute Intermittent Porphyria: A Rare Cause of Postoperative Abdominal Pain and Hyponatremia.

Cureus
2025

Clinical management of pigmented purpuric dermatoses: evidence from a survey among the Study Group on Cutaneous Vascular Diseases of the Italian Society of Dermatology and Venereology.

Italian journal of dermatology and venereology
2025

[Porphyria cutanea tarda and hepatitis C infection].

Ugeskrift for laeger
2025

[Porphyria cutanea tarda].

Ugeskrift for laeger
2025

Pathogenesis and clinical management of liver damage in porphyrias: Mechanisms and therapeutic approaches.

World journal of hepatology
2025

Oral lipoteichoic and lipoic acids improve insulin resistance and body composition in porphyria mice on a high-carbohydrate diet.

Journal of physiology and biochemistry
2025

Tirzepatide for the treatment of adults living with concurrent type 1 diabetes and overweight or obesity (TZP-T1D): a double-blind, placebo-matched randomised controlled trial protocol.

BMJ open
2025

Rbm38 deficiency impairs erythroid heme biosynthesis and induces porphyria via reduced ferrochelatase expression.

Blood
2025

Cord blood porphyrin analysis in neonates at risk of inheriting protoporphyria: An observational cohort study.

British journal of haematology
2026

Reduced PPOX Expression Causes Intrinsic Pathogenicity in Keratinocytes, Contributing to the Cutaneous Variegate Porphyria Phenotype.

The Journal of investigative dermatology
2026

Red fluorescence in porphyria cutanea tarda.

Journal of the European Academy of Dermatology and Venereology : JEADV
2025

Safety of Everolimus and Sirolimus-Eluting Coronary Devices in a Patient With Porphyria Presenting With Acute Coronary Syndromes: A Two-Year Follow-Up.

Catheterization and cardiovascular interventions : official journal of the Society for Cardiac Angiography &amp; Interventions
2026

Development and validation of an LC-MS/MS method for measurement of porphobilinogen in urine.

Clinica chimica acta; international journal of clinical chemistry
2025

Erythropoietic protoporphyria in childhood: clinical clues, missed diagnoses and emerging therapy.

European journal of pediatrics
2025

Primary adrenal insufficiency associated with homozygous hereditary coproporphyria.

European journal of endocrinology
2025

Screening for acute hepatic porphyria in postural tachycardia syndrome.

Clinical autonomic research : official journal of the Clinical Autonomic Research Society
2025

Animal Models of Porphyria with Hepatic Involvement.

Seminars in liver disease
2025

Dorsal Hand Involvement in Porphyria Cutanea Tarda.

Acta medica portuguesa
2025

Schizophrenia and psychosis in children and adolescents: An inspiring journey of scientific progress and the rich influences of history and religion.

Disease-a-month : DM
2025

Clinical significance of anti-mitochondrial antibodies and PBC-specific anti-nuclear antibodies in evaluating atypical primary biliary cholangitis with normal alkaline phosphatase levels.

Clinical chemistry and laboratory medicine
2025

Impact of delay in diagnosis in patients with erythropoietic protoporphyria: A cross-sectional survey study.

JAAD international
2025

Porphyria Cutanea Tarda: A Multifactorial Disease.

Cureus
2025

A female adolescent with hyponatremia, seizure, rhabdomyolysis, arterial hypertension and neuropsychiatric symptoms.

Wiener medizinische Wochenschrift (1946)
2025

Topical Chlormethine Gel in the Treatment of Lymphomatoid Papulosis: A Case Report and Literature Review.

Journal of clinical medicine
2026

Demonstrating commutability of an existing certified reference material for use with an end-user measurement procedure that was not included in the original commutability assessment.

Clinica chimica acta; international journal of clinical chemistry
2025

Jaundice in an Adult Female Patient With Photosensitivity.

ACG case reports journal
2025

Acute psychosis in variegate porphyria: a case report.

Neuropsychiatrie : Klinik, Diagnostik, Therapie und Rehabilitation : Organ der Gesellschaft Osterreichischer Nervenarzte und Psychiater
2025

Afamelanotide in managing cutaneous phototoxicity in erythropoietic protoporphyria: a Scottish perspective.

Clinical and experimental dermatology
2025

[Abdominal pain and severely impaired consciousness in a 19-year-old female patient].

Innere Medizin (Heidelberg, Germany)
2025

Features of Undiagnosed Abdominal Pain and Diagnostic Status of Acute Hepatic Porphyria in Japan: A Retrospective Study.

International journal of medical sciences
2025

Managing Psychosis in Acute Intermittent Porphyria: A Case Report on Olanzapine Use.

Cureus
2025

An Adolescent Female With Disordered Eating and Cannabis Use Found to Have Acute Intermittent Porphyria.

Case reports in psychiatry
2025

Guide for the classification of porphyrias using state-of-the-art reverse-phase high-performance liquid chromatography.

Scandinavian journal of clinical and laboratory investigation
2025

Coexistence of Mycosis Fungoides and Photosensitive or Autoimmune Diseases. The Therapeutic Challenge: A retrospective Case Series from a Tertiary Referral Center.

The Israel Medical Association journal : IMAJ
2025

Successful Pregnancy After Combined Liver and Renal Transplantation in a Patient With Acute Intermittent Porphyria.

Case reports in transplantation
2025

Comparison of Pyrazinamide with Isoniazid for Their Effects on the Heme Biosynthetic Pathway in Mouse Liver.

Metabolites
2025

Clinical Features and Outcomes of Acute Intermittent Porphyria Presenting With Acute Quadriparesis: A Case Series and Follow-Up Study.

European journal of neurology
2025

Sunscreen and Photoprotection Habits for Patients With Porphyria and Non-Porphyric Photosensitivity Conditions.

Photodermatology, photoimmunology &amp; photomedicine
2025

Comparative effectiveness of human hematin and heme arginate in the management of porphyria attacks: an observational study across three hospitals in Colombia.

Hospital practice (1995)
2025

Part I. Dermatologic Manifestations in Patients with Kidney Disease.

Journal of the American Academy of Dermatology
2025

OATP1B1/1B3 deficiency exacerbates hyperbilirubinemia in erythropoietic protoporphyria.

Drug metabolism and disposition: the biological fate of chemicals
2025

Atypical Presentation of Homozygous UROD Mutation: Porphyria Cutanea Tarda or Mild Hepatoerythropoietic Porphyria?

Clinical genetics
2025

Porphyria Cutanea Tarda: A Phenotypic Expression of Several Genes.

Cureus
2025

Haematological parameters in erythropoietic protoporphyria: A multi-national study.

British journal of haematology
2025

A Prospective, Blinded Study of Symptom Prevalence and Specificity of Porphyrin Precursors in Carriers of Acute Hepatic Porphyria.

Liver international : official journal of the International Association for the Study of the Liver
2025

Porphyria cutanea tarda and systemic lupus erythematosus: a case report.

Journal of medical case reports
2024

5-Aminolevulonic Acid, a New Tumor Contrast Agent: Anesthesia Considerations in Patients Undergoing Craniotomy.

Journal of neurosurgical anesthesiology
2025

Unique Dermatological and Systemic Manifestations in a Classic Pediatric Case of Kindler Syndrome: A Case Report and Literature Review.

Clinical medicine insights. Case reports
2025

Sporadic Porphyria Cutanea Tarda, Cutaneous Sarcoidosis, and Compound Heterozygosity of HFE Mutations Cys282Tyr and His63Asp-A Case Report.

EJHaem
2025

A Systematic Review and Meta-Analysis of Ocular and Periocular Basal Cell Carcinoma with First-Time Description of Dermoscopic and Reflectance Confocal Microscopy Features of Caruncle Basal Cell Carcinoma.

Diagnostics (Basel, Switzerland)
2025

Skin Manifestations Among Individuals With Hepatitis C Infection.

Cureus
2025

Hydroa Vacciniforme: A Rare Pediatric Photodermatosis.

Cureus
2025

Axonal Neuropathy in Hepatic Porphyria Should Not be Confused With Guillain-Barre Syndrome.

The Neurohospitalist
2025

Acute Hepatic Porphyria vs. Guillain-Barré Syndrome: Response to "Axonal Neuropathy in Hepatic Porphyria Should Not be Confused With Guillain-Barre Syndrome".

The Neurohospitalist
2025

Sex differences in associations between body composition and cardiometabolic indicators in Chinese children: a cross-sectional study.

BMJ open
2025

Specific effects on liver relevant for performing a dietary cumulative risk assessment of pesticide residues.

EFSA journal. European Food Safety Authority
2025

Biological Variation of Erythrocyte Total, Metal-Free, and Zinc Protoporphyrin IX in Patients with Erythropoietic Protoporphyria and Healthy Subjects: Implications for Clinical Interpretation and Monitoring.

Clinical chemistry
2025

Efficacy and safety of givosiran in Japanese patients with acute hepatic porphyria: clinical findings from an expanded access study.

Scientific reports
2025

Primary adrenal insufficiency in patients with CPOX gene mutations.

European journal of endocrinology
2025

Diagnostic and Therapeutic Challenges in an Acute Variegate Porphyric Crisis Complicated by Anuric Renal Failure and Multiorgan Dysfunction: A Case Report.

The American journal of case reports
2025

Iron deficiency in patients with cardiogenic shock: protocol for a scoping review.

BMJ open
2025

Congenital Erythropoietic Porphyria.

JAMA dermatology
2025

Identification of a novel nonsense mutation and a recurrent missense mutation in UROS gene in a patient with congenital erythropoietic porphyria.

Frontiers in genetics
2025

Understanding Coproporphyrins and Their Disposition: Coproporphyrinuria is Common, of Diverse Cause, and Rarely Indicates Porphyria.

The American journal of medicine
2025

A New Generation of Porphyrias: A Case of Acute Intermittent Porphyria.

Cureus
2025

Recurrence of hypoglycaemia and associated factors among neonates admitted with perinatal asphyxia in Northwest Ethiopia: multicentre, retrospective follow-up study with negative binomial regression.

BMJ open
2025

Unmasked acute intermittent porphyria in a patient with COVID-19-associated posterior reversible encephalopathy syndrome.

BMC neurology
2025

Acute Hepatic Porphyria Presenting as Guillain-Barré Syndrome: Importance of Early Recognition and Screening.

The Neurohospitalist
2025

Alpha-lipoic acid on intermediate disease markers in overweight or obese adults: a systematic review and meta-analysis.

BMJ open
2025

Hepatocellular Carcinoma in Acute Porphyria: Incidence and Risk Factors.

Digestive diseases and sciences
2025

Blistering photosensitivity in an icteric patient-think of variegate porphyria.

QJM : monthly journal of the Association of Physicians
2025

Treatment of Porphyria Cutanea Tarda Scarring With Combination Laser Treatment and a Pilot Use of Artificial Intelligence to Quantify Laser Results.

Journal of cosmetic dermatology
2025

CLO25-068: Hereditary Porphyria and the Risk of Hematological and Solid Malignancies: A Retrospective Cohort Study.

Journal of the National Comprehensive Cancer Network : JNCCN
2025

Porphyria presenting as posterior reversible encephalopathy syndrome.

Acta neurologica Belgica
2025

Influence of military preventive policy for recruit training on COVID-19 seroconversion: the IMPACT-COVID-19 study.

BMJ military health
2025

Unmasking Osmotic Demyelination Syndrome/Extrapontine Myelinolysis in Acute Intermittent Porphyria: Preventable Complications-Challenges in Diagnosis and Management.

Annals of Indian Academy of Neurology
2025

Characterizing hepatic porphyria: Insights from a quaternary care hospital in Bogotá, Colombia (2013-2023).

The Journal of international medical research
2025

Neurodevelopmental retardation and neurological symptoms in homozygous variegate porphyria: two new cases and a literature review.

Orphanet journal of rare diseases
2025

A novel HMBS gene mutation in acute intermittent porphyria: a case report of abdominal pain, seizures, and reversible neuroimaging findings.

Frontiers in genetics
2025

The risk of skin infections in end-stage renal disease patients with porphyria cutanea tarda: A retrospective cohort study.

The American journal of the medical sciences
2025

German Cohort Observational Study to Investigate the Short- and Long-Term Safety and Clinical Effectiveness of Afamelanotide 16 mg (SCENESSE) in Patients With Erythropoietic Protoporphyria (EPP).

Photodermatology, photoimmunology &amp; photomedicine
2025

Association of maternal metabolic risk factors with offspring body mass index (BMI) trajectories in early childhood: a retrospective cohort study.

BMJ open
2025

Nutrition and rare diseases: a case study of patients with acute intermittent porphyria (AIP).

Nutrition &amp; metabolism
2025

Defining Predictive Factors for Permanent Chemotherapy-Induced Alopecia: Trichoscopy, Reflectance Confocal Microscopy and Histopathology Study on 77 Patients.

Dermatology and therapy
2025

Hepatoerythropoietic Porphyria with Coexisting BTD And CNGB1 Genetic Mutations: A First Case Report.

European journal of case reports in internal medicine
2025

Cutaneous T-cell lymphomas: a real-life experience of anticipated use of mogamulizumab in Italy.

Italian journal of dermatology and venereology
2025

Congenital erythropoietic porphyria: the overlooked inherited disorder.

BMJ case reports
2025

Fatal outcome of erythropoietic protoporphyria with advanced liver disease.

Clinics and research in hepatology and gastroenterology
2025

Acute hepatic porphyria in Denmark; a retrospective study.

Orphanet journal of rare diseases
2025

Long-term iron supplementation in four patients with X-linked erythropoietic protoporphyria: associations with serum proteins and erythrocyte protoporphyrin levels-a single-centre retrospective study.

Frontiers in molecular biosciences
2025

Practical Recommendations in the Treatment of Acute and Chronic Life-Threatening Infectious Diseases in Patients with Acute Hepatic Porphyria.

Metabolites
2025

A case report of acute intermittent porphyria presenting with reversible cerebral vasoconstriction syndrome.

Medicine
2025

Acute Hepatic Porphyria Should Be Included in the Diagnostic Work-Up of Patients with Resistant Hypertension or Suspected Secondary Hypertension.

Medical sciences (Basel, Switzerland)
2025

Paternal Split-Liver Transplantation Followed by Haploidentical Hematopoietic Cell Transplantation in an Adult Patient With Protoporphyria-Induced Liver Failure.

EJHaem
2025

Identifying haemochromatosis patients with C282Y homozygosity from inpatient electronic patient records in England using a novel algorithm: a retrospective observational study.

BMJ open
2025

An easily overlooked disease in the early stages: acute intermittent porphyria.

BMC neurology
2025

Scavenger endothelial cells alleviate tissue damage by engulfing toxic molecules derived from hemolysis.

Proceedings of the National Academy of Sciences of the United States of America
2025

Porphyria Diagnostics Part 2: Essential Biochemical Testing for Diagnosis of the Porphyrias.

Current protocols
2025

Porphyric encephalopathy in a 15-year-old girl: A case report.

SAGE open medical case reports
2025

Hepatocyte Rho-associated kinase signaling is required for mice to survive experimental porphyria-associated liver injury.

Hepatology communications
2025

Specialty laboratory testing for chronic abdominal pain in irritable bowel syndrome.

Scandinavian journal of gastroenterology
2024

Hypophosphatemic Rickets as a Key Sign for the Diagnosis of Hereditary Tyrosinemia Type 1: Case Reports and Narrative Review of the Literature.

Revista medica de Chile
2025

Cost-Benefit Analysis of in vivo Reflectance Confocal Microscopy for Melanoma Diagnosis in a Real-World Clinical Setting.

Risk management and healthcare policy
2025

The Histamine Pathway is a Target to Treat Hepatic Experimental Erythropoietic Protoporphyria.

Cellular and molecular gastroenterology and hepatology
2025

Patient experience with acute hepatic porphyria before and after long-term givosiran treatment in a qualitative interview study.

Molecular genetics and metabolism reports
2024

Premature Calcification of Costochondral Cartilage: A Scoping Review of the Literature.

Cureus
2024

Clinical Advantages of Phlebotomy: An Umbrella Review of Meta-Analyses.

Iranian journal of public health
2024

Diagnosing Porphyria in a Female Patient With Diffuse Pelvic Pain: A Case Study.

Cureus
2024

Acute Intermittent Porphyria in an Adolescent Patient: Diagnostic and Treatment Challenges.

Cureus
2024

Baseline urinary ALA and PBG as criteria for starting pharmacologic prophylactic treatment in acute intermittent porphyria treated with givosiran.

Molecular genetics and metabolism reports
2025

Recommendations for assessing commutability of a replacement batch of a secondary calibrator certified reference material.

Clinica chimica acta; international journal of clinical chemistry
2025

Enhanced cardiovascular risks in patients with porphyria Cutanea Tarda: A retrospective cohort study.

Journal of the European Academy of Dermatology and Venereology : JEADV
2025

Profound hypotonia in an infant with δ-aminolevulinic acid dehydratase deficient porphyria.

European journal of human genetics : EJHG
2024

Concordance Among In Vivo Reflectance Confocal Microscopy, Trichoscopy, and Histopathology in the Evaluation of Alopecia Areata Incognita.

Dermatology practical &amp; conceptual
2024

Milia within resolving bullous pemphigoid lesions.

Dermatology online journal
2024

Porphyria cutanea tarda: a unique iron-related disorder.

Hematology. American Society of Hematology. Education Program
2024

Givosiran: a targeted treatment for acute intermittent porphyria.

Hematology. American Society of Hematology. Education Program
2024

Inhibition of ABCG2 prevents phototoxicity in a mouse model of erythropoietic protoporphyria.

Nature communications
2024

German Real-World Experience of Patients with Diverse Features of Acute Intermittent Porphyria Treated with Givosiran.

Journal of clinical medicine
2024

Pemafibrate for treating MASLD complicated by hypertriglyceridaemia: a multicentre, open-label, randomised controlled trial study protocol.

BMJ open
2024

Porphyria Cutanea Tarda in a Patient With Hereditary Hemochromatosis: A Complex Overlap Disorder.

Cureus
2025

A 38-year-Old Woman With Flaccid Tetraparesis after Presenting With Abdominal Pain.

The Neurohospitalist
2024

Worsening abdominal pain leading to false laparotomy: A case of acute intermittent porphyria.

JPMA. The Journal of the Pakistan Medical Association
2024

Effects of internet-based health education on patients with acute intermittent porphyria.

Orphanet journal of rare diseases
2025

Systematic review and meta-analysis of biological variation data of urine albumin, albumin to creatinine ratio and other markers in urine.

Clinica chimica acta; international journal of clinical chemistry
2025

Needle-like red cell inclusions in congenital erythropoietic porphyria.

British journal of haematology
2024

Acute Intermittent Porphyria: A Diagnostic Conundrum.

Cureus
2025

Nontargeted urine metabolomic analysis of acute intermittent porphyria reveals novel interactions between bile acids and heme metabolism: New promising biomarkers for the long-term management of patients.

Journal of inherited metabolic disease
2024

Hepatocellular Carcinoma in Acute Hepatic Porphyria: A Meta-Analysis of Observational Studies.

Digestive diseases and sciences
2024

Hyponatremia associated with acute intermittent porphyria.

Kidney international
Ver todos os 6.246 no EuropePMC

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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. Reference intervals for fasting insulin and insulin-related indices in healthy adults: a cross-sectional study in Gandaki Province, Nepal.
    BMJ open· 2026· PMID 41857869mais citado
  2. Liver graft as a 'Trojan horse': manifestation of variegate porphyria in an 11-month-old girl with biliary atresia after living-related liver transplantation.
    Gastroenterology report· 2026· PMID 41841034mais citado
  3. Hematopoietic stem cell transplantation for erythropoietic porphyria-induced acute liver failure: a case report and literature review.
    Clinics and research in hepatology and gastroenterology· 2026· PMID 41812822mais citado
  4. CladeOScope-GSA: Revealing Evolutionary Associations Across Gene Sets.
    International journal of molecular sciences· 2026· PMID 41683878mais citado
  5. Aminolevulinate inhibition of human coproporphyrinogen oxidase clarifies coproporphyrin III accumulation in porphyrias.
    Bioscience reports· 2026· PMID 41677324mais citado
  6. An X. Rbm38 binds Fech pre-mRNA to prevent anemia and porphyria. Blood. 2025;146(25):3016-3017.
    Blood· 2026· PMID 41989795recente
  7. Acute intermittent porphyria presenting as posterior reversible encephalopathy syndrome: a case report.
    J Med Case Rep· 2026· PMID 41943033recente
  8. Real-World Experience With Givosiran in Acute Porphyrias: A Narrative Review and a Novel Hypothesis.
    Cureus· 2026· PMID 41930050recente
  9. Constipation with megacolon or acute porphyria.
    Gastroenterol Rep (Oxf)· 2026· PMID 41908890recente
  10. Prioritizing Contaminants of Emerging Concern in the Yangtze River Basin: An Integrated Assessment Combining Exposure-Activity Ratios and Adverse Outcome Pathways.
    Environ Toxicol Chem· 2026· PMID 41903199recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:738(Orphanet)
  2. MONDO:0019142(MONDO)
  3. Porfiria Aguda Intermitente(PCDT · Ministério da Saúde)
  4. GARD:10353(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Artigo Wikipedia(Wikipedia)
  8. Q271759(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

Porfiria
Compêndio · Raras BR

Porfiria

ORPHA:738 · MONDO:0019142
🇧🇷 Brasil SUS
Geral
Prevalência
1-9 / 100 000
Herança
Autosomal dominant, Autosomal recessive
CID-10
E80.1 · Porfiria cutânea tardia
CID-11
Ensaios
12 ativos
Início
All ages
Prevalência
5.25 (Worldwide)
MedGen
UMLS
C0032708
Repurposing
2 candidatos
chlorpromazinedopamine receptor antagonist
heminenzyme inducer
EuropePMC
Wikidata
Wikipedia
Papers 10a
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