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Esclerose hepato-portal
ORPHA:64743CID-10 · K74.1DOENÇA RARA

Esclerose hepatoportal (HPS) é uma doença rara caracterizada pelo endurecimento das veias portais do fígado, pressão alta nas veias do fígado (chamada hipertensão portal) sem cirrose, aumento do baço sem causar sintomas e sangramentos recorrentes de varizes.

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Introdução

O que você precisa saber de cara

📋

Esclerose hepatoportal (HPS) é uma doença rara caracterizada pelo endurecimento das veias portais do fígado, pressão alta nas veias do fígado (chamada hipertensão portal) sem cirrose, aumento do baço sem causar sintomas e sangramentos recorrentes de varizes.

Publicações científicas
112 artigos
Último publicado: 2026 Jan 1

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Início
All ages
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: K74.1
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Sinais e sintomas

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

Partes do corpo afetadas

🫃
Digestivo
9 sintomas
🩸
Sangue
5 sintomas
❤️
Coração
2 sintomas
🧠
Neurológico
2 sintomas
🛡️
Imunológico
1 sintomas
💪
Músculos
1 sintomas

+ 10 sintomas em outras categorias

Características mais comuns

90%prev.
Esplenomegalia
Muito frequente (99-80%)
90%prev.
Anemia
Muito frequente (99-80%)
55%prev.
Tempo de protrombina prolongado
Frequente (79-30%)
55%prev.
Sangramento anormal
Frequente (79-30%)
55%prev.
Variz esofágica
Frequente (79-30%)
55%prev.
Hipertensão portal
Frequente (79-30%)
30sintomas
Muito frequente (2)
Frequente (11)
Ocasional (16)
Muito raro (1)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 30 características clínicas mais associadas, ordenadas por frequência.

EsplenomegaliaSplenomegaly
Muito frequente (99-80%)90%
Anemia
Muito frequente (99-80%)90%
Tempo de protrombina prolongadoProlonged prothrombin time
Frequente (79-30%)55%
Sangramento anormalAbnormal bleeding
Frequente (79-30%)55%
Variz esofágicaEsophageal varix
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico112PubMed
Últimos 10 anos33publicações
Pico20238 papers
Linha do tempo
2026Hoje · 2026🧪 2023Primeiro ensaio clínico📈 2023Ano de pico
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

🧬

Nenhum gene associado encontrado

Os dados genéticos desta condição ainda estão sendo catalogados.

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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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.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
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Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Esclerose hepato-portal

🗺️

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

1 ensaios clínicos encontrados.

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

Timeline de publicações
34 papers (10 anos)
#1

Noncirrhotic Portopulmonary Hypertension Due to Hepatoportal Sclerosis in Adams-Oliver Syndrome.

Pediatrics2026 Jan 01

A 13-year-old girl presented for evaluation of pulmonary hypertension after symptoms of dyspnea and exercise intolerance. Full evaluation was negative except for abdominal ultrasonography with splenomegaly and esophageal varices suggestive of portal hypertension. Cardiac and hepatic vein catheterization confirmed portopulmonary hypertension. Liver biopsy demonstrated sinusoidal dilatation, nodularity, and minimal fibrosis, which was interpreted as possible nodular regenerative hyperplasia but not cirrhosis. Radiographic imaging, including computed tomography venography, demonstrated an elongated and severely stenotic extrahepatic portal vein, and portal hypertension was presumed to be secondary to congenital portal vein hypoplasia. She was treated with ambrisentan with initial improvement in symptoms and estimated pulmonary pressure. Whole-exome sequencing revealed a likely pathogenic missense mutation in Delta-like canonical Notch ligand 4 associated with Adams-Oliver syndrome. After 2 years, pulmonary hypertension and right heart failure symptoms worsened, along with liver failure. She then had fulminant liver failure and cardiorespiratory arrest. Resuscitative efforts included extracorporeal membranous oxygenation (ECMO), but because of hypoxic brain injury, care was compassionately withdrawn. Autopsy limited to the thorax and abdomen revealed high-grade pulmonary plexiform arteriopathy, splenomegaly, esophageal varices, and large splenorenal shunt. The liver was small with a nodular surface but not fibrotic. The entire length of the extrahepatic portal vein was severely stenotic, and intrahepatic portal veins were missing or diminutive-findings diagnostic of hepatoportal sclerosis. Noncirrhotic portopulmonary hypertension is rare and should include evaluation of immunologic, infectious, toxic, thrombotic, and genetic etiologies. Unfortunately, there is no known treatment of hepatoportal sclerosis.

#2

Arsenic and young liver: a case report of hepatic steatosis due to arsenic toxicity.

Clinical journal of gastroenterology2025 Feb

Arsenic toxicity is rare in developed countries. It may be difficult to diagnose due to its heterogenous symptom presentation. We present a case of severe hepatic steatosis and cholestatic hepatitis associated with arsenic toxicity in an adult.

#3

Intrinsic Causes of Nonfibrotic Portal Hypertension-A Clinicopathologic Review of 56 Patients.

International journal of surgical pathology2025 May

Aim: The differential diagnosis of intrinsic nonfibrotic conditions that may lead to portal hypertension include hepatoportal sclerosis (HPS), nodular regenerative hyperplasia (NRH), and sinusoidal obstruction syndrome (SOS). In this article, we characterize the clinical features and outcome of these lesions when they manifest as portal hypertension. Methods: Data was collected through retrospective patient medical records. Results: Patients (HPS: 28, NRH: 17, SOS: 11) were identified more frequently in recent years. All groups presented with signs and symptoms of portal hypertension. All patients had complex medical histories. An elevated serum alkaline phosphatase occurred in all groups and an elevated bilirubin with SOS. Imaging of the liver with HPS and NRH suggested cirrhosis, which was not seen with SOS. 11%, 12%, and 9% of patients in the HPS, NRH, and SOS respectively, underwent transjugular intrahepatic portosystemic shunt placement to manage the complications of portal hypertension, while 43%, 24%, and 36% of patients respectively, received a liver transplant. Conclusions: Patients with HPS, NRH, and SOS had complex medical histories, likely contributing to the development of these lesions. They are recognized more frequently now. In contrast to HPS and NRH, SOS occurred in liver transplant recipients, was associated with elevated serum bilirubin, and imaging did not suggest the presence of advanced fibrosis/cirrhosis. Liver transplantation appeared to be a viable treatment for complications related to HPS and NRH. Retransplantation for SOS yielded mixed results. HPS, SOS, and NRH should be considered when evaluating liver specimens from patients with unexplained nonfibrotic portal hypertension. Key message: Intrinsic nonfibrotic causes of portal hypertension appear to be increasing in frequency. The differential diagnosis includes NRH, HPS, and SOS. These conditions are associated with complex diseases and possibly due to treatments. Pathologists need to be aware of this differential diagnosis when presented with liver biopsies performed to assess portal hypertension.

#4

Rare hepatocellular carcinoma presentation: Hepatoportal sclerosis.

Hepatology forum2023 Jan

Hepatoportal sclerosis (HPS) is an idiopathic non-cirrhotic portal hypertension (INCPH) characterized by hypersplenism, portal hypertension, and splenomegaly. Hepatocellular carcinoma (HCC) is the most common form of liver cancer. Non-cirrhotic portal hypertension is an extremely rare cause of HCC. A 36-year-old woman was referred to our hospital with esophageal varices. All serologic tests for etiology were negative. Serum ceruloplasmin and serum Ig A-M-G were normal. In the follow-up, two liver lesions were identified on a triple-phase computer. The lesions had arterial enhancement but no washout in the venous phase. In the magnetic resonance imaging examination, differentiation in favor of HCC was considered at one of the lessions. Radiofrequency ablation therapy was first applied to a patient who had no signs of metastasis. Within 2 months, the patient underwent a living donor liver transplant. In explant pathology, well-differentiated HCC and HPS were considered the cause of non-cirrhotic portal hypertension. The patient has been followed without relapse for 3 years. The development of HCC in INCPH patients is still debatable. Despite the presence of liver cell atypia and pleomorphism in nodular regenerative hyperplasia liver specimens, a causal link between HCC and INCPH is yet to be established.

#5

Traditional Chinese Medicine, Cordyceps, Related to Hepatoportal Sclerosis.

ACG case reports journal2023 Dec

We describe a case of hepatoportal sclerosis (HPS) identified in an 81-year-old woman taking a traditional Chinese herbal supplementation, Cordyceps. The patient presented with splenomegaly and weight loss. After an extensive evaluation, liver biopsy confirmed loss of the small portal veins with characteristics of obstruction at the level of the small and large portal veins, suggestive of HPS. After a comprehensive history and exclusion of other etiological factors, patient's HPS was attributed to Cordyceps use. Ultimately, the patient's features of HPS improved with the cessation of Cordyceps.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC59 artigos no totalmostrando 33

2026

Noncirrhotic Portopulmonary Hypertension Due to Hepatoportal Sclerosis in Adams-Oliver Syndrome.

Pediatrics
2025

Arsenic and young liver: a case report of hepatic steatosis due to arsenic toxicity.

Clinical journal of gastroenterology
2025

Intrinsic Causes of Nonfibrotic Portal Hypertension-A Clinicopathologic Review of 56 Patients.

International journal of surgical pathology
2023

Traditional Chinese Medicine, Cordyceps, Related to Hepatoportal Sclerosis.

ACG case reports journal
2023

A Narrative Review on Non-Cirrohotic Portal Hypertension: Not All Portal Hypertensions Mean Cirrhosis.

Diagnostics (Basel, Switzerland)
2023

First Successful Liver-Alone Transplantation for TERT (Telomerase Reverse Transcriptase)-Telomeropathy-Related Hepatoportal Sclerosis Cirrhosis.

Cureus
2023

Portal Hypertension Due to Hepatoportal Sclerosis in an HIV-Positive Patient Secondary to Didanosine Use.

Cureus
2023

Rare hepatocellular carcinoma presentation: Hepatoportal sclerosis.

Hepatology forum
2023

Hepatoportal Sclerosis-A Clinicopathologic Review of 28 Cases.

Gastro hep advances
2023

Porto-Sinusoidal Vascular Disease: A Concise Updated Summary of Epidemiology, Pathophysiology, Imaging, Clinical Features, and Treatments.

Korean journal of radiology
2022

Obliterative portal venopathy: A neglected and probably misdiagnosed disease with peculiar etiology in South America.

JGH open : an open access journal of gastroenterology and hepatology
2023

Liver Explants of Biliary Atresia Patients Transplanted in Adulthood Show Features of Obliterative Portal Venopathy: Case Series and Guidelines for Pathologic Reporting of Adult Explants.

Archives of pathology &amp; laboratory medicine
2022

Ayurvedic treatment induced severe alcoholic hepatitis and non-cirrhotic portal hypertension in a 14-year-old girl.

Oxford medical case reports
2022

Polyneuropathy, Organomegaly, Endocrinopathy, M-protein, and Skin Changes (POEMS) Syndrome and Idiopathic Portal Hypertension: A Rare Association.

Cureus
2022

Rapid liver atrophy and refractory ascites due to hepatoportal sclerosis in a patient after haploidentical stem cell transplantation.

Leukemia &amp; lymphoma
2021

Obliterative Portal Venopathy Caused by Oral Contraceptive Pills: A Case Report.

Journal of medical cases
2021

HISTOPATHOLOGICAL, CLINICAL AND EPIDEMIOLOGICAL FEATURES OF HEPATOPORTAL SCLEROSIS IN A REFERRAL CENTER FOR LIVER DISEASE IN NORTHEASTERN BRAZIL.

Arquivos de gastroenterologia
2021

Congenital hepatic fibrosis and its mimics: a clinicopathologic study of 19 cases at a single institution.

Diagnostic pathology
2020

Porto-sinusoidal vascular disease. Vascular liver diseases: Position papers from the francophone network for vascular liver diseases, the French Association for the Study of the Liver (AFEF), and ERN-rare liver.

Clinics and research in hepatology and gastroenterology
2020

Aberrant von Willebrand factor expression of sinusoidal endothelial cells and quiescence of hepatic stellate cells in nodular regenerative hyperplasia and obliterative portal venopathy.

Histopathology
2020

Progressive Splenomegaly and Hypersplenism: An Unusual Case of Splenic Vein Stenosis with Histologic Findings of Hepatoportal Sclerosis.

The Journal of pediatrics
2019

Idiopathic noncirrhotic portal hypertension.

Seminars in diagnostic pathology
2019

Portal Cavernoma Cholangiopathy: Histologic Features and Differential Diagnosis.

American journal of clinical pathology
2018

Vascular liver diseases on the clinical side: definitions and diagnosis, new concepts.

Virchows Archiv : an international journal of pathology
2018

Hepatic morphology abnormalities: beyond cirrhosis.

Abdominal radiology (New York)
2017

POEMS syndrome and idiopathic portal hypertension: a possible association.

Revista espanola de enfermedades digestivas
2017

Adams-Oliver syndrome review of the literature: Refining the diagnostic phenotype.

American journal of medical genetics. Part A
2016

Progression of Hepatic Adenoma to Carcinoma in the Setting of Hepatoportal Sclerosis in HIV Patient: Case Report and Review of the Literature.

Case reports in hepatology
2016

 Hepatoportal sclerosis related to the use of herbals and nutritional supplements. Causality or coincidence?

Annals of hepatology
2016

Idiopathic noncirrhotic portal hypertension: current perspectives.

Hepatic medicine : evidence and research
2016

Metabolomics as a diagnostic tool for idiopathic non-cirrhotic portal hypertension.

Liver international : official journal of the International Association for the Study of the Liver
2015

Hepatocellular nodules expressing markers of hepatocellular adenomas in Budd-Chiari syndrome and other rare hepatic vascular disorders.

Journal of hepatology
2015

Cerebro-retinal microangiopathy with calcifications and cysts due to recessive mutations in the CTC1 gene.

Revue neurologique
Ver todos os 59 no EuropePMC

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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. Noncirrhotic Portopulmonary Hypertension Due to Hepatoportal Sclerosis in Adams-Oliver Syndrome.
    Pediatrics· 2026· PMID 41406992mais citado
  2. Arsenic and young liver: a case report of hepatic steatosis due to arsenic toxicity.
    Clinical journal of gastroenterology· 2025· PMID 39377877mais citado
  3. Intrinsic Causes of Nonfibrotic Portal Hypertension-A Clinicopathologic Review of 56 Patients.
    International journal of surgical pathology· 2025· PMID 39165183mais citado
  4. Rare hepatocellular carcinoma presentation: Hepatoportal sclerosis.
    Hepatology forum· 2023· PMID 36843893mais citado
  5. Traditional Chinese Medicine, Cordyceps, Related to Hepatoportal Sclerosis.
    ACG case reports journal· 2023· PMID 38033616mais citado
  6. A Narrative Review on Non-Cirrohotic Portal Hypertension: Not All Portal Hypertensions Mean Cirrhosis.
    Diagnostics (Basel)· 2023· PMID 37892084recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:64743(Orphanet)
  2. MONDO:0018991(MONDO)
  3. GARD:18865(GARD (NIH))
  4. Busca completa no PubMed(PubMed)
  5. Q55788440(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

Compêndio · Raras BR

Esclerose hepato-portal

ORPHA:64743 · MONDO:0018991
Prevalência
Unknown
CID-10
K74.1 · Esclerose hepática
Início
All ages
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C4273756
Testes
777 disponíveis
EuropePMC
Wikidata
Papers 10a
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