A síndrome congênita do intestino curto é um distúrbio intestinal raro em neonatos de etiologia desconhecida. Os pacientes nascem com um intestino delgado curto (menos de 75 cm de comprimento) que compromete a absorção intestinal adequada e provoca diarreia crónica, vómitos e atraso no crescimento.
Introdução
O que você precisa saber de cara
A Congenital short bowel syndrome é uma condição rara em que o bebê já nasce com o intestino delgado muito mais curto do que o normal, com menos de 75 centímetros. Por ter um intestino menor, o organismo não consegue absorver os nutrientes adequadamente, o que causa vômitos constantes, diarreia crônica e grande dificuldade para ganhar peso e crescer. A doença pode ter causas genéticas ligadas a alterações em genes como CLMP e FLNA, exigindo investigação médica aprofundada. No Brasil, ela não possui um protocolo clínico com medicamentos padronizados pelo SUS, mas o sistema público prevê exames genéticos e atendimento em reabilitação para auxiliar no cuidado multidisciplinar da criança.
A síndrome congênita do intestino curto é um distúrbio intestinal raro em neonatos de etiologia desconhecida. Os pacientes nascem com um intestino delgado curto (menos de 75 cm de comprimento) que compromete a absorção intestinal adequada e provoca diarreia crónica, vómitos e atraso no crescimento.
Escala de raridade
<1/50kMuito rara
1/20kRara
1/10kPouco freq.
1/5kIncomum
1/2k
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Entender a doença
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Sinais e sintomas
O que aparece no corpo e com que frequência cada sintoma acontece
Partes do corpo afetadas
+ 10 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 35 características clínicas mais associadas, ordenadas por frequência.
Linha do tempo da pesquisa
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Genética e causas
O que está alterado no DNA e como passa nas famílias
Genes associados
2 genes identificados com associação a esta condição. Padrão de herança: Autosomal recessive, X-linked recessive.
Periventricular nodular heterotopia 1
A developmental disorder characterized by the presence of periventricular nodules of cerebral gray matter, resulting from a failure of neurons to migrate normally from the lateral ventricular proliferative zone, where they are formed, to the cerebral cortex. PVNH1 is an X-linked dominant form. Heterozygous females have normal intelligence but suffer from seizures and various manifestations outside the central nervous system, especially related to the vascular system. Hemizygous affected males die in the prenatal or perinatal period.
Congenital short bowel syndrome
A disease characterized by a shortened small intestine, intestinal malrotation, and malabsorption. The mean length of the small intestine in CSBS patients is approximately 50 cm, compared with a normal length at birth of 190-280 cm. Patients with CSBS may develop severe malnutrition as a result of the hugely reduced absorptive surface of the small intestine. Infants require parenteral nutrition for survival. However, parenteral nutrition itself causes life-threatening complications such as sepsis and liver failure which are associated with a high rate of mortality early in life.
Variantes genéticas (ClinVar)
1.233 variantes patogênicas registradas no ClinVar.
Classificação de variantes (ClinVar)
Distribuição de 9 variantes classificadas pelo 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 — Congenital short bowel syndrome
Centros de Referência SUS
24 centros habilitados pelo SUS para Congenital short bowel syndrome
Centros para Congenital short bowel syndrome
Detalhes dos centros
Hospital Universitário Prof. Edgard Santos (HUPES)
R. Dr. Augusto Viana, s/n - Canela, Salvador - BA, 40110-060 · CNES 0003808
Serviço de Referência
Hospital Infantil Albert Sabin
R. Tertuliano Sales, 544 - Vila União, Fortaleza - CE, 60410-794 · CNES 2407876
Serviço de Referência
Hospital de Apoio de Brasília (HAB)
AENW 3 Lote A Setor Noroeste - Plano Piloto, Brasília - DF, 70684-831 · CNES 0010456
Serviço de Referência
Hospital Estadual Infantil e Maternidade Alzir Bernardino Alves (HIABA)
Av. Min. Salgado Filho, 918 - Soteco, Vila Velha - ES, 29106-010 · CNES 6631207
Serviço de Referência
Hospital das Clínicas da UFG
Rua 235 QD. 68 Lote Área, Nº 285, s/nº - Setor Leste Universitário, Goiânia - GO, 74605-050 · CNES 2338424
Serviço de Referência
Hospital Universitário da UFJF
R. Catulo Breviglieri, Bairro - s/n - Santa Catarina, Juiz de Fora - MG, 36036-110 · CNES 2297442
Atenção Especializada
Hospital das Clínicas da UFMG
Av. Prof. Alfredo Balena, 110 - Santa Efigênia, Belo Horizonte - MG, 30130-100 · CNES 2280167
Serviço de Referência
Hospital Universitário Julio Müller (HUJM)
R. Luis Philippe Pereira Leite, s/n - Alvorada, Cuiabá - MT, 78048-902 · CNES 2726092
Atenção Especializada
Hospital Universitário João de Barros Barreto
R. dos Mundurucus, 4487 - Guamá, Belém - PA, 66073-000 · CNES 2337878
Serviço de Referência
Hospital Universitário Lauro Wanderley (HULW)
R. Tabeliao Estanislau Eloy, 585 - Castelo Branco, João Pessoa - PB, 58050-585 · CNES 0002470
Atenção Especializada
Instituto de Medicina Integral Prof. Fernando Figueira (IMIP)
R. dos Coelhos, 300 - Boa Vista, Recife - PE, 50070-902 · CNES 0000647
Serviço de Referência
Hospital Pequeno Príncipe
R. Des. Motta, 1070 - Água Verde, Curitiba - PR, 80250-060 · CNES 3143805
Serviço de Referência
Hospital Universitário Regional de Maringá (HUM)
Av. Mandacaru, 1590 - Parque das Laranjeiras, Maringá - PR, 87083-240 · CNES 2216108
Atenção Especializada
Hospital de Clínicas da UFPR
R. Gen. Carneiro, 181 - Alto da Glória, Curitiba - PR, 80060-900 · CNES 2364980
Serviço de Referência
Hospital Universitário Pedro Ernesto (HUPE-UERJ)
Blvd. 28 de Setembro, 77 - Vila Isabel, Rio de Janeiro - RJ, 20551-030 · CNES 2280221
Serviço de Referência
Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira (IFF/Fiocruz)
Av. Rui Barbosa, 716 - Flamengo, Rio de Janeiro - RJ, 22250-020 · CNES 2269988
Serviço de Referência
Hospital São Lucas da PUCRS
Av. Ipiranga, 6690 - Jardim Botânico, Porto Alegre - RS, 90610-000 · CNES 2232928
Serviço de Referência
Hospital de Clínicas de Porto Alegre (HCPA)
Rua Ramiro Barcelos, 2350 Bloco A - Av. Protásio Alves, 211 - Bloco B e C - Santa Cecília, Porto Alegre - RS, 90035-903 · CNES 2237601
Serviço de Referência
Hospital Universitário da UFSC (HU-UFSC)
R. Profa. Maria Flora Pausewang - Trindade, Florianópolis - SC, 88036-800 · CNES 2560356
Serviço de Referência
Hospital das Clínicas da FMUSP
R. Dr. Ovídio Pires de Campos, 225 - Cerqueira César, São Paulo - SP, 05403-010 · CNES 2077485
Serviço de Referência
Hospital de Base de São José do Rio Preto
Av. Brg. Faria Lima, 5544 - Vila Sao Jose, São José do Rio Preto - SP, 15090-000 · CNES 2079798
Atenção Especializada
Hospital de Clínicas da UNICAMP
R. Vital Brasil, 251 - Cidade Universitária, Campinas - SP, 13083-888 · CNES 2748223
Serviço de Referência
Hospital de Clínicas de Ribeirão Preto (HCRP-USP)
R. Ten. Catão Roxo, 3900 - Vila Monte Alegre, Ribeirão Preto - SP, 14015-010 · CNES 2082187
Serviço de Referência
UNIFESP / Hospital São Paulo
R. Napoleão de Barros, 715 - Vila Clementino, São Paulo - SP, 04024-002 · CNES 2688689
Serviço de Referência
Dados de DATASUS/CNES, SBGM, ABNeuro e Ministério da Saúde. Sempre confirme a disponibilidade diretamente com o estabelecimento.
Pesquisa ativa
Ensaios clínicos abertos e novidades científicas recentes
Pesquisa e ensaios clínicos
Nenhum ensaio clínico registrado para esta condição.
Publicações mais relevantes
Corrigendum to "Smooth muscle cell (SMC) Specific SNRK deletion in mouse causes congenital short bowel syndrome and premature death" [Biochem. Biophys. Rep. 44 (2025) 102298].
[This corrects the article DOI: 10.1016/j.bbrep.2025.102298.].
Loss-of-Function of CLMP Is Associated With Congenital Short Bowel Syndrome and Impaired Intestinal Development.
Coxsackie and adenovirus receptor-like membrane protein (CLMP) mutation is identified as a genetic risk factor of congenital short bowel syndrome (CSBS). However, the specific pathogenic mechanism remains unclear. This study aimed to explore the clinical manifestations, genetic characteristics, and molecular mechanisms underlying CSBS caused by CLMP mutations. Whole-exome sequencing was performed to determine the pathogenic gene mutations in children with CSBS and their family members. In addition, a zebrafish model was established by microinjecting morpholinos into zebrafish embryos to investigate the role of clmp in intestinal embryonic development. This was investigated by measuring the length of zebrafish, evaluating gastrointestinal motility, and performing qRT-PCR assays. Two children with CSBS had CLMP mutations, one with a c.244C>T (p.R82*) mutation and exons 3-5 deletion, and the other with a c.23T>A (p.L8*) mutation and exons 3-5 deletion. After knocking down clmp expression in zebrafish embryos, the intestinal length and the gastrointestinal motility decreased. Furthermore, the expression of smooth muscle-associated genes decreased significantly. Additionally, clmp mRNA partially rescued zebrafish defects caused by clmp morpholino knockdown. Clmp knockdown decreased intestinal transport dynamics and expression of smooth muscle-related genes in zebrafish. CLMP is expected to be a potential gene therapeutic target for CSBS.
Case Report: genotype-phenotype correlations in FLNA mutations: insights from a case of multisystem dysfunction.
Filamin A (FLNA) mutations are associated with the development of numerous diseases and disorders. Although recent studies have shed light on genotype-phenotype relationships, the evidence remains fragmented. Herein, we report the case of a male infant with an FLNA nonsense mutation (c.5265C>G; p.Tyr1755*) identified through trio whole-exome sequencing. The patient exhibited multisystem dysfunction, including periventricular nodular heterotopia, congenital heart disease (perimembranous ventricular septal defect), congenital short bowel syndrome, lung disease, and fatal sepsis. We analyzed this case along with a systematic review of 62 cases of male patients with FLNA mutations to explore genotype-phenotype relationships. Results: Following the American College of Medical Genetics and Genomics and the Association for Molecular Pathology guidelines, the variant was classified as likely pathogenic (PVS1, PM2, and PP3). Segregation analysis confirmed maternal inheritance. Standard genetic testing (karyotype and CGH-array) results were unremarkable. This case expands the phenotypic spectrum of FLNA deficiency, linking a nonsense mutation to a severe clinical course with fatal complications such as necrotizing enterocolitis and sepsis, highlighting the need for vigilant multi-organ monitoring.
Advances in research on congenital and hereditary intestinal diseases: From molecular mechanisms to precision medicine.
Congenital and hereditary intestinal diseases are a group of major disorders caused by gene mutations or embryonic developmental anomalies and are characterized by diverse clinical manifestations and complex management. This review systematically explores the molecular genetic basis and pathogenic mechanisms of common intestinal diseases, including familial adenomatous polyposis (FAP), Peutz-Jeghers syndrome (PJS), Lynch syndrome (LS), Hirschsprung disease (HSCR), congenital short bowel syndrome (SBS), and cystic fibrosis (CF). It focuses on cross-disease commonalities in translational research frontiers such as gene-environment interactions, organoid-based precision medicine, the immune microenvironment, and metabolic and microbiome remodeling. The review also forecasts future directions, including gene therapy, targeted drugs, and other cutting-edge research advances.
Experience in enteral and parenteral nutrition schemes for familial congenital short bowel syndrome: Two case reports.
Congenital short bowel syndrome (CSBS) is a rare disorder characterized by a congenital shortage in the length of the small intestines, resulting in compromised intestinal functionality, frequently accompanied by congenital intestinal malrotation. This study summarizes the experience of enteral and parenteral nutrition (PN) schemes for two cases of CSBS accompanied by intestinal malrotation to provide a reference for this condition. Case 1 underwent surgical intervention 23 days after birth, but experienced postoperative intolerance to oral feeding. Consequently, the patient was transitioned to nasal feeding for 6 months while concurrently receiving round-the-clock PN. Despite ongoing adjustments to the caloric intake of enteral and PN throughout the treatment, cholestatic liver injury persisted. Furthermore, this child developed malnutrition by the age of 1 year. Case 2 received surgical intervention on 2 days after birth, demonstrating favorable tolerance for enteral feeding and intermittent PN. The child exhibited satisfactory growth and development without any associated complications. CSBS is rarely encountered in clinical practice and is often accompanied by congenital intestinal malrotation. It can be improved with early diagnosis and active surgical intervention. Thus, we recommend early initiation of total PN, which is a highly effective measure in promoting early growth and development.
Publicações recentes
Corrigendum to "Smooth muscle cell (SMC) Specific SNRK deletion in mouse causes congenital short bowel syndrome and premature death" [Biochem. Biophys. Rep. 44 (2025) 102298].
🥉 Relato de casoCase Report: genotype-phenotype correlations in FLNA mutations: insights from a case of multisystem dysfunction.
📖 RevisãoAdvances in research on congenital and hereditary intestinal diseases: From molecular mechanisms to precision medicine.
🥉 Relato de casoExperience in enteral and parenteral nutrition schemes for familial congenital short bowel syndrome: Two case reports.
Smooth muscle cell (SMC)-Specific SNRK deletion in mouse causes congenital short bowel syndrome and premature death.
📚 EuropePMC35 artigos no totalmostrando 25
Corrigendum to "Smooth muscle cell (SMC) Specific SNRK deletion in mouse causes congenital short bowel syndrome and premature death" [Biochem. Biophys. Rep. 44 (2025) 102298].
Biochemistry and biophysics reportsCase Report: genotype-phenotype correlations in FLNA mutations: insights from a case of multisystem dysfunction.
Frontiers in geneticsAdvances in research on congenital and hereditary intestinal diseases: From molecular mechanisms to precision medicine.
Intractable & rare diseases researchExperience in enteral and parenteral nutrition schemes for familial congenital short bowel syndrome: Two case reports.
World journal of gastrointestinal surgerySmooth muscle cell (SMC)-Specific SNRK deletion in mouse causes congenital short bowel syndrome and premature death.
Biochemistry and biophysics reportsA unique case of late-onset CIPO caused by a missense mutation in the long isoform of FLNA.
Frontiers in geneticsLoss-of-Function of CLMP Is Associated With Congenital Short Bowel Syndrome and Impaired Intestinal Development.
Clinical geneticsCongenital short bowel syndrome: Cases series in the same family and review of literature.
International journal of surgery case reportsCLMP is a tumor suppressor that determines all-trans retinoic acid response in colorectal cancer.
Developmental cellCXADR-Like Membrane Protein Regulates Colonic Epithelial Cell Proliferation and Prevents Tumor Growth.
GastroenterologyThe IgSF Cell Adhesion Protein CLMP and Congenital Short Bowel Syndrome (CSBS).
International journal of molecular sciencesCongenital Short Bowel Syndrome With Annular Pancreas Presenting as Neonatal Intestinal Obstruction.
CureusCongenital Short-Bowel Syndrome Is Associated With a Novel Deletion Mutation in the CLMP Gene: Mutations in CLMP Caused CSBS.
Frontiers in pediatricsCongenital Short-Bowel Syndrome: Clinical and Genetic Presentation in China.
JPEN. Journal of parenteral and enteral nutritionWhole-Exome Sequencing Identified Novel CLMP Mutations in a Family With Congenital Short Bowel Syndrome Presenting Differently in Two Probands.
Frontiers in geneticsCongenital short bowel syndrome: a rare cause of neonatal intestinal obstruction.
The Journal of international medical researchCongenital short bowel syndrome: systematic review of a rare condition.
Journal of pediatric surgeryAlternative technique to save ischemic bowel segment in management of neonatal short bowel syndrome: A case report.
World journal of clinical casesFirst Report of Congenital Short Bowel Syndrome in an Iranian Patient Caused by a Mutation in the CLMP Gene.
Journal of pediatric geneticsThe IgCAM CLMP regulates expression of Connexin43 and Connexin45 in intestinal and ureteral smooth muscle contraction in mice.
Disease models & mechanismsCongenital Short-Bowel Syndrome in an Adult Dog.
Veterinary pathologyTwo new mutations of the CLMP gene identified in a newborn presenting congenital short-bowel syndrome.
Clinics and research in hepatology and gastroenterologyGenetic screening of Congenital Short Bowel Syndrome patients confirms CLMP as the major gene involved in the recessive form of this disorder.
European journal of human genetics : EJHGCongenital Short Bowel Syndrome due to Absent Midgut.
Indian journal of pediatricsCongenital Short Bowel Syndrome: from clinical and genetic diagnosis to the molecular mechanisms involved in intestinal elongation.
Biochimica et biophysica actaAssociações
Organizações que acompanham esta doença — pra ter apoio e orientação
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Doença com base genética
Um médico geneticista pode ajudar no diagnóstico de Congenital short bowel syndrome 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
Embora a etiologia geral seja considerada desconhecida, a condição possui herança genética autossômica recessiva e recessiva ligada ao X. Mutações nos genes CLMP e FLNA estão formalmente associadas ao desenvolvimento dessa anomalia congênita.
Referências
Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete
6 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.). Congenital short bowel syndrome. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/congenital-short-bowel-syndrome
Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.
Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar
Congenital short bowel syndrome
📋 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)
- Dado público estruturado
- fonte: Wikidata