A agenesia parcial do pâncreas é caracterizada pela ausência congênita de uma massa crítica de tecido pancreático.
Introdução
O que você precisa saber de cara
A agenesia pancreática parcial é uma condição rara em que a criança nasce sem uma parte importante do pâncreas. Por causa dessa alteração anatômica, podem surgir diabetes no recém-nascido e dificuldade de digestão, com fezes gordurosas e déficit de ganho de peso. A condição não tem um PCDT exclusivo no Ministério da Saúde, mas o SUS oferece exames diagnósticos como o exoma e suporte em reabilitação.
A agenesia parcial do pâncreas é caracterizada pela ausência congênita de uma massa crítica de tecido pancreático.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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
+ 6 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 16 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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
3 genes identificados com associação a esta condição. Padrão de herança: Autosomal recessive.
Pancreatic and cerebellar agenesis
A disease characterized by neonatal diabetes mellitus, cerebellar agenesis or hypoplasia, severe intrauterine growth retardation, the presence of very little subcutaneous fat, and dysmorphic facial features.
Pancreatic agenesis 1
A disease characterized by isolated hypoplasia or agenesis of the pancreas, pancreatic beta-cell failure resulting in neonatal insulin-dependent diabetes mellitus, and exocrine pancreatic insufficiency.
Variantes genéticas (ClinVar)
120 variantes patogênicas registradas no ClinVar.
Vias biológicas (Reactome)
5 vias biológicas associadas aos genes desta condição.
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 — Agenesia pancreática parcial
Selecione um estado ou use sua localização para ver resultados.
Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.
Pesquisa ativa
Ensaios clínicos abertos e novidades científicas recentes
Pesquisa e ensaios clínicos
Nenhum ensaio clínico registrado para esta condição.
Publicações mais relevantes
From multiple spleens to absence: Insights from two cases of heterotaxy syndromes.
Heterotaxy syndrome is a rare congenital disorder characterized by abnormal arrangement of the thoracic and abdominal organs and is classified into polysplenia (left isomerism) and asplenia (right isomerism) syndromes. Polysplenia is associated with multiple splenic nodules, bilobed lungs, vascular anomalies, and organ malpositioning. In contrast, asplenia features bilateral trilobed lungs and eparterial bronchi, and is commonly associated with severe cardiac defects and high neonatal mortality. Here, we report 2 cases that illustrate the clinical spectrum of heterotaxy syndrome. The first case involved a 59-year-old female presenting with vague abdominal pain that was incidentally found to have features of polysplenia syndrome, including multiple splenules, malpositioned liver, partial pancreatic agenesis, and bilobed lungs. The second case was a 26-hour-old neonate who presented with cyanosis and respiratory distress and was diagnosed with right isomerism and complex congenital heart disease, including right ventricular outflow tract (RVOT) stenosis, atrioventricular canal defect, situs inversus, and asplenia. These cases highlight the varied presentations and anatomical complexity of heterotaxy syndrome, emphasizing the role of imaging in its diagnosis and clinical management.
A Mouse Model of Partial Pancreas Agenesis Induced by Polo-like kinase 1 Mutation.
The pancreas regulates metabolic homeostasis through exocrine and endocrine pathways. Dysfunction or loss of pancreatic β-cells causes diabetes. Here we explore the role of Polo-like kinase 1 (PLK1) in the pancreas using a pancreatic-lineage specific knockout (Plk1PKO) mouse model. Plk1PKO leads to partial pancreatic agenesis, diminishing pancreatic mass. Adult Plk1PKO mice exhibit diabetic syndromes including hyperglycemia, glucose intolerance, and insulin hypersensitivity. Plk1PKO mice also exhibit growth retardation and reduced skeletal muscle and adipose tissue masses. Furthermore, Plk1PKO mice develop metabolic adaptation towards fatty acid utilization, manifested by elevated oxygen consumption (VO2), reduced respiratory exchange ratio (RER), and more oxidative myofibers. These findings reveal a key role of PLK1 in pancreas development.
A NONSENSE GATA6 MUTATION EXPLAINS HISTORY OF CONGENITAL HEART DEFECTS AND 10 YEARS OF POORLY-CONTROLLED DIABETES LACKING DKA IN A NON-OBESE 30 YEAR-OLD INCIDENTALLY FOUND TO HAVE PANCREATIC HYPOPLASIA.
To report a case of diabetes mellitus (DM) associated with partial pancreatic agenesis and congenital heart disease (CHD) in a patient found to have a nonsense mutation of the GATA6 gene. We present the imaging, laboratory, and genetic findings, and describe the clinical course of a patient with an atypical presentation of DM as well as CHD, who was found to have partial pancreatic agenesis on computed tomography (CT) imaging. Genetic testing was performed to identify monogenic DM. A 30-year-old nonobese female with a waxing and waning pattern of insulin-dependent DM diagnosed at the age of 20 was found to have partial pancreatic agenesis on CT scan. It was unclear whether the patient was experiencing undetected hyperglycemia prior to initial diagnosis of DM. She had no history of diabetic ketoacidosis (DKA) despite poorly-controlled diabetes and years without insulin treatment. The patient also had congenital tricuspid atresia, ventricular septal defect, and transposition of the great vessels with surgical correction in childhood. Partial pancreatic agenesis and CHD with atypical DM prompted genetic testing for monogenic DM, and a nonsense mutation of the GATA6 (c.1242C>A, p.C414*) gene was found. GATA6 mutations are associated with a broad spectrum of diabetic phenotypes, pancreatic agenesis, and a variety of CHDs. This case highlights the importance of considering monogenic diabetes in young, nonobese patients with diabetes, particularly with negative pancreatic antibodies and no history of DKA. Further, this case demonstrates the importance of testing for GATA6 mutations in any young patient with diabetes and CHD.
Case report: adult onset diabetes with partial pancreatic agenesis and congenital heart disease due to a de novo GATA6 mutation.
Mutations in GATA6 are the most frequent cause of pancreatic agenesis. Most cases present with neonatal diabetes mellitus. The case was a female born after an uncomplicated pregnancy and delivery in a non-consanguineous family (3.59 kg, 70th percentile). Severe cardiac malformations were diagnosed at two and a half months old. No hyperglycaemic episodes were recorded in the neonatal period. Diabetes was diagnosed at 21 years due to the detection of incidental glycosuria. She had a low but detectable C-peptide level at diagnosis. Anti-GAD and Islet-cell antibodies were negative and she failed oral hypoglycaemic therapy and was started on insulin. Abdominal MRI revealed the absence of most of the neck, body, and tail of pancreas with normal pancreas elastase levels. Criteria for type 1 or type 2 diabetes were not fulfilled, therefore a next generation sequencing (NGS) panel was performed. A novel heterozygous pathogenic GATA6 mutation (p.Tyr235Ter) was identified. The GATA6 variant was not detected in her parents, implying that the mutation had arisen de novo in the proband. Rarely GATA6 mutations can cause adult onset diabetes. This report highlights the importance of screening the GATA6 gene in patients with adult-onset diabetes, congenital cardiac defects and pancreatic agenesis with no first-degree family history of diabetes. It also emphasizes the importance of genetic counselling in these patients as future offspring will be at risk of inheriting the variant and developing GATA6 anomalies.
Publicações recentes
From multiple spleens to absence: Insights from two cases of heterotaxy syndromes.
A Mouse Model of Partial Pancreas Agenesis Induced by Polo-like kinase 1 Mutation.
A NONSENSE GATA6 MUTATION EXPLAINS HISTORY OF CONGENITAL HEART DEFECTS AND 10 YEARS OF POORLY-CONTROLLED DIABETES LACKING DKA IN A NON-OBESE 30 YEAR-OLD INCIDENTALLY FOUND TO HAVE PANCREATIC HYPOPLASIA.
Case report: adult onset diabetes with partial pancreatic agenesis and congenital heart disease due to a de novo GATA6 mutation.
The role of pancreatic imaging in monogenic diabetes mellitus.
📚 EuropePMC2 artigos no totalmostrando 4
From multiple spleens to absence: Insights from two cases of heterotaxy syndromes.
Radiology case reportsA Mouse Model of Partial Pancreas Agenesis Induced by Polo-like kinase 1 Mutation.
FASEB journal : official publication of the Federation of American Societies for Experimental BiologyA NONSENSE GATA6 MUTATION EXPLAINS HISTORY OF CONGENITAL HEART DEFECTS AND 10 YEARS OF POORLY-CONTROLLED DIABETES LACKING DKA IN A NON-OBESE 30 YEAR-OLD INCIDENTALLY FOUND TO HAVE PANCREATIC HYPOPLASIA.
AACE clinical case reportsCase report: adult onset diabetes with partial pancreatic agenesis and congenital heart disease due to a de novo GATA6 mutation.
BMC medical geneticsAssociações
Organizações que acompanham esta doença — pra ter apoio e orientação
Ainda não temos associações cadastradas para Agenesia pancreática parcial.
É de uma associação que acompanha esta doença? Fale com a gente →
Doença com base genética
Um médico geneticista pode ajudar no diagnóstico de Agenesia pancreática parcial e no aconselhamento genético da família.
Doenças relacionadas
Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico
Perguntas frequentes
O que as famílias mais perguntam sobre esta doença — cada resposta com a fonte de onde saiu
Sim, a agenesia pancreática parcial possui padrão de herança autossômico recessivo. Ela está relacionada a alterações em genes específicos do desenvolvimento pancreático, como ZNF808, PTF1A e PDX1.
Referências
Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete
5 publicações do grafo RarasNet (PubMed) · 6 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.
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.
Citar este verbete
Raras. (s.d.). Agenesia pancreática parcial. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/agenesia-pancreatica-parcial
Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.
Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar
Agenesia pancreática parcial
📋 Origem dos dados
Esta página agrega dados de fontes públicas e oficiais. Dados sobre cobertura no SUS (PCDT, CEAF) são verificados ativamente por agente proativo (ver badge no infobox). Demais dados têm atribuição de fonte + data da última sincronização — clique para abrir o original.
- Doença rara (ontologia)
- fonte: Orphanet
- Identificador unificado
- fonte: MONDO
- Codificação WHO/SUS
- fonte: WHO ICD-10 / DATASUS
- CID-11 (futuro)
- fonte: WHO ICD-11
- NIH/GARD
- fonte: GARD (NIH)
- Indexação biomédica
- fonte: MeSH (NLM)
- Dado público estruturado
- fonte: Wikidata