A síndrome de Hennekam se caracteriza pela associação de inchaço (linfedema) em algumas partes do corpo, dilatação dos vasos linfáticos no intestino que prejudica a absorção de nutrientes, dificuldade de aprendizado e características faciais atípicas.
Introdução
O que você precisa saber de cara
A síndrome de Hennekam se caracteriza pela associação de inchaço (linfedema) em algumas partes do corpo, dilatação dos vasos linfáticos no intestino que prejudica a absorção de nutrientes, dificuldade de aprendizado e características faciais atípicas.
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
+ 40 sintomas em outras categorias
Características mais comuns
Os sintomas variam de pessoa para pessoa. Abaixo estão as 109 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.
Cleaves the propeptides of type II collagen prior to fibril assembly. Does not act on types I and III collagens
SecretedSecreted, extracellular space, extracellular matrix
Hennekam lymphangiectasia-lymphedema syndrome 3
A form of Hennekam lymphangiectasia-lymphedema syndrome, a generalized lymph-vessels dysplasia characterized by intestinal lymphangiectasia with severe lymphedema of the limbs, genitalia and face. In addition, affected individuals have unusual facies and some manifest intellectual disability. HKLLS3 is characterized by widespread congenital edema, facial dysmorphism and protein-losing enteropathy of variable severity. HKLLS3 transmission pattern is consistent with autosomal recessive inheritance.
Required for lymphangioblast budding and angiogenic sprouting from venous endothelium during embryogenesis
Secreted
Hennekam lymphangiectasia-lymphedema syndrome 1
A form of Hennekam lymphangiectasia-lymphedema syndrome, a generalized lymph-vessels dysplasia characterized by intestinal lymphangiectasia with severe lymphedema of the limbs, genitalia and face. In addition, affected individuals have unusual facies and some manifest intellectual disability. HKLLS1 inheritance is autosomal recessive.
Cadherins are calcium-dependent cell adhesion proteins. FAT4 plays a role in the maintenance of planar cell polarity as well as in inhibition of YAP1-mediated neuroprogenitor cell proliferation and differentiation (By similarity)
Membrane
Van Maldergem syndrome 2
An autosomal recessive disorder characterized by intellectual disability, typical craniofacial features, auditory malformations resulting in hearing loss, and skeletal and limb malformations. Some patients have renal hypoplasia. Brain MRI typically shows periventricular nodular heterotopia.
Variantes genéticas (ClinVar)
499 variantes patogênicas registradas no ClinVar.
Vias biológicas (Reactome)
3 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 — Síndrome Hennekam
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
Correlations between phenotype and gene region-specific episignatures in Rubinstein-Taybi syndrome and Menke-Hennekam syndrome.
Rubinstein-Taybi syndrome (RSTS) and Menke-Hennekam syndrome (MKHK) are two rare Mendelian disorders presented with variable degrees of intellectual disability and different facial dysmorphism. They are caused by loss-of-function (LOF) variants or missense/inframe deletion variants in the exon 30 and 31 of the CREBBP gene respectively. This study aimed to refine the phenotype and provide characterization of genome-wide DNA methylation (DNAm) in RSTS and MKHK. We integrated and analyzed clinical data of 151 patients with RSTS and 36 patients with MKHK from this study and literatures. Meanwhile, genome-wide DNAm analysis were carried out on 51 blood samples (RSTS n = 9, MKHK n = 8, control n = 33), and 21 human induced pluripotent cell (hiPSC) samples (RSTS n = 5, MKHK n = 4, control n = 12). Phenotype analysis showed that patients with RSTS variants downstream the last 50 nt of the penultimate exon had atypical facial malformation and severer medical problems compared to the classical RSTS caused by LOF CREBBP variants. Individuals with MKHK variants in intrinsically disordered region (IDR) showed resemblant features. Meanwhile, DNAm analysis identified two specific blood DNA methylation patterns (episignatures): RSTS and MKHK_IDR compared to matched normal controls. Samples with MKHK variants outside the IDR did not obey the MKHK_IDR episignature. By interrogating DNAm in hiPSCs of patients with RSTS and MKHK, we observed differentially methylated genes play a role in embryonic development and organogenesis. In conclusion, our results suggest that phenotypic features and DNA methylation episignatures may differ for each genomic region.
Skipping of Exon 20 in EP300: A Novel Variant Linked to Rubinstein-Taybi Syndrome With Atypical and Severe Clinical Manifestations.
Rubinstein-Taybi syndrome (RSTS) is a rare autosomal dominant neurodevelopmental disorder linked to haploinsufficiency of CREBBP (RSTS1) and EP300 (RSTS2) genes. Characteristic features often include distinctive facial traits, broad thumbs and toes, short stature, and various degrees of intellectual disability. The clinical presentation of RSTS is notably variable, making it challenging to establish a clear genotype-phenotype correlation, except for specific variants which cause the allelic Menke-Hennekam syndrome. Trio exome analysis, data collection via networking and GeneMatcher platforms, transcript processing analysis, and DNA methylation profiling were performed. We identified two unrelated patients with de novo variants in EP300 (NM_001429.4: c.3671+5G>C; c.3671+5_3671+8delGTAA) predicted to cause in-frame exon 20 skipping, confirmed in one patient. In silico 3D protein modeling suggested that exon 20 deletion (comprising 27 amino acids) likely alters the structural conformation between the RING_CBP-p300 and HAT-KAT11 domains. Clinically, both patients displayed severe RSTS2-like clinical features, including autism spectrum disorder, speech delay, hearing loss, microcephaly, developmental delay, and intellectual disability, alongside ocular, respiratory, and cardiovascular abnormalities. Additionally, one patient developed early-onset colorectal cancer. DNA methylation profiling in Subject #1 confirmed RSTS but did not align with the specific episignatures for RSTS1 or RSTS2. We propose that skipping of exon 20 in EP300 is associated with a distinct form of Rubinstein-Taybi syndrome featuring clinical characteristics not fully aligning with RSTS1 or RSTS2. Our findings increase the understanding of RSTS genetic and molecular basis and stress the need for further research to establish definitive genotype-phenotype correlations.
The complex network of p300/CBP regulation: Interactions, posttranslational modifications, and therapeutic implications.
Two closely related acetyltransferases, p300 and its paralog CBP, are important regulators of gene expression and protein modulators in higher eukaryotes, influencing a wide array of cellular processes, including cell division, growth, DNA replication and repair, and apoptosis. The broad cellular impact is underscored by p300/CBP's capacity to interact with hundreds of proteins through various domains and the capability to acetylate numerous substrates and ubiquitinate selected targets. This intricate network of interactions and modifications highlights the essential role of p300/CBP in orchestrating cellular responses to pathological and physiological stimuli, thereby necessitating precise regulatory mechanisms to maintain their activity and substrate specificity. The regulation of p300/CBP is primarily governed by protein interactions and posttranslational modifications, including acetylation and ubiquitination, with autoregulation serving as a vital component in sustaining their enzymatic functions. The significance of tightly controlled p300/CBP activity is further emphasized by its association with various diseases, including Rubinstein-Taybi syndrome, Menke-Hennekam syndrome, and numerous cancers. Furthermore, the potential of p300/CBP as a therapeutic target has sparked interest in developing specific inhibitors. This review aims to elucidate the complex regulatory mechanisms of p300/CBP, focusing on posttranslational modifications, intermolecular interactions, and their implications in disease. A comprehensive understanding of the molecular foundations of p300/CBP regulation is essential for unraveling their roles in cellular processes and advancing targeted therapeutic strategies.
Identification of a novel, pathogenic CREBBP variant in a patient with Menke-Hennekam syndrome: a Case Report.
Menke-Hennekam syndrome (MKHK) is a recently described rare autosomal dominant disorder caused by loss-of-function variants in exon 30 or 31 of CREBBP (CREB-binding protein) or EP300 genes. These genes encode transcriptional coactivators with a key role in chromatin remodeling and regulation of gene expression. Herein, we report the identification and characterization of a novel missense variant in CREBBP, NM_004380.3:c.5368T>C p.(Cys1790Arg), in a 4-year-old male. The clinical presentation of the patient included global developmental delay, intellectual disability, growth retardation, and distinct craniofacial dysmorphisms, resembling known MKHK subtypes, but also exhibiting less common or unique features such as excessive palmar skin and the absence of recurrent infections and autism spectrum behaviors. Genetic analysis via trio-based clinical exome sequencing confirmed the de novo origin of the CREBBP variant, which was classified as pathogenic based on ACGS guidelines 2020. Structural modeling predicted that the NP_004371.2:p.(Cys1790Arg) substitution may disrupt the tertiary structure of the CBP TAZ2 domain (amino acids 1772-1840) when interacting with STAT1 but not with adenovirus E1A, potentially affecting transcription factor binding and disease phenotype. The findings contribute to the evolving classification of MKHK subtypes and to deciphering the complexity of genotype-phenotype relationships in MKHK.
A Novel EP300 Variant in an African American Girl With Global Developmental Delay and Leukemia.
Pathogenic germline missense and in-frame indel variants in exons 30 or 31 of the EP300 gene are associated with Menke-Hennekam syndrome-2 (MKHK2). The phenotypic spectrum associated with MKHK2 is variable, including neurodevelopmental, respiratory, skeletal, and immunological impairments. Based on their genetic, clinical, and DNA methylation profiles, a recent study proposed three domain-specific subtypes of MKHK: MKHK-ZZ, MKHK-TAZ2, and MKHK-ID4. In somatic cells, EP300 variants have been reported in lymphoma, leukemia, and various solid tumors. We present an African American girl with global developmental delay, failure to thrive, microcephaly, seizure, osteopenia, and T-cell acute lymphoblastic leukemia (T-ALL). We performed karyotype, FISH, chromosomal microarray, and exome sequencing with probands bone marrow, blood, and buccal swab. Comprehensive genetic studies using multiple tissues detected somatic complex cytogenomic changes in blood cells and a de novo germline missense variant (NM_001429.4: c.5258G>A, p.Cys1753Tyr) in the TAZ2 domain of EP300 from her buccal swab, which is consistent with a diagnosis of MKHK2. While in our patient we observed phenotypic overlaps with affected individuals harboring variants in the TAZ2 domain, some phenotypes such as osteopenia and alopecia have not been reported previously. The hematolymphoid malignancy of our patient also raises the question of whether germline EP300 variants are associated with a genetic predisposition to cancer. Together, this case expands the growing body of knowledge regarding the clinical and genetic spectrum of MKHK2. This is the first MKHK individual reported in the literature in an underrepresented population of African American ancestry.
Publicações recentes
Correlations between phenotype and gene region-specific episignatures in Rubinstein-Taybi syndrome and Menke-Hennekam syndrome.
The complex network of p300/CBP regulation: Interactions, posttranslational modifications, and therapeutic implications.
🥈 ObservacionalIdentification of a novel, pathogenic CREBBP variant in a patient with Menke-Hennekam syndrome: a Case Report.
A Novel EP300 Variant in an African American Girl With Global Developmental Delay and Leukemia.
Skipping of Exon 20 in EP300: A Novel Variant Linked to Rubinstein-Taybi Syndrome With Atypical and Severe Clinical Manifestations.
📚 EuropePMC50 artigos no totalmostrando 39
Correlations between phenotype and gene region-specific episignatures in Rubinstein-Taybi syndrome and Menke-Hennekam syndrome.
Human molecular geneticsThe complex network of p300/CBP regulation: Interactions, posttranslational modifications, and therapeutic implications.
The Journal of biological chemistryIdentification of a novel, pathogenic CREBBP variant in a patient with Menke-Hennekam syndrome: a Case Report.
Frontiers in geneticsA Novel EP300 Variant in an African American Girl With Global Developmental Delay and Leukemia.
Molecular genetics & genomic medicineSkipping of Exon 20 in EP300: A Novel Variant Linked to Rubinstein-Taybi Syndrome With Atypical and Severe Clinical Manifestations.
Clinical geneticsMenke-Hennekam syndrome; delineation of domain-specific subtypes with distinct clinical and DNA methylation profiles.
HGG advancesA case report of Hennekam syndrome with a mutation in the CCBE1 gene.
Clinical dysmorphologyNewfound features associated with Hennekam Syndrome (Intestinal Lymphangiectasia-Lymphedema-Intellectual-Disability Syndrome) complicated with comorbid Waldmann's Disease resulting in Celiac Disease.
Clinical case reportsUse of expanded carrier screening for retrospective diagnosis of two deceased siblings with Van Maldergem syndrome 2: case report.
Asian biomedicine : research, reviews and newsDiagnosis of Menke-Hennekam syndrome by prenatal whole exome sequencing and review of prenatal signs.
Molecular genetics & genomic medicineIn-silico assessment of high-risk non-synonymous SNPs in ADAMTS3 gene associated with Hennekam syndrome and their impact on protein stability and function.
BMC bioinformaticsCase report: a Chinese girl like atypical Rubinstein-Taybi syndrome caused by a novel heterozygous mutation of the EP300 gene.
BMC medical genomicsHennekam Syndrome due to a Novel Homozygous CCBE1 Mutation Presenting as Pediatric-Onset Common Variable Immune Deficiency.
Journal of investigational allergology & clinical immunology[A case of Menke-Hennekam syndrome-1 caused by CREBBP gene variation].
Zhonghua er ke za zhi = Chinese journal of pediatricsMenke-Hennekam Syndrome: A Literature Review and a New Case Report.
Children (Basel, Switzerland)CCBE1 in Cardiac Development and Disease.
Frontiers in geneticsThe novel and recurrent variants in exon 31 of CREBBP in Japanese patients with Menke-Hennekam syndrome.
American journal of medical genetics. Part APredicting the Most Deleterious Missense Nonsynonymous Single-Nucleotide Polymorphisms of Hennekam Syndrome-Causing CCBE1 Gene, In Silico Analysis.
TheScientificWorldJournalIntestinal lymphangiectasia in a 3-month-old girl: A case report of Hennekam syndrome caused by CCBE1 mutation.
MedicineAtypical cadherin FAT4 orchestrates lymphatic endothelial cell polarity in response to flow.
The Journal of clinical investigationBiallelic mutation of FBXL7 suggests a novel form of Hennekam syndrome.
American journal of medical genetics. Part AHennekam syndrome: an uncommon cause of chylous ascites and intestinal lymphangiectasia in the tropics.
BMJ case reportsIntestinal lymphangiectasia-A novel finding in Van Maldergem syndrome challenging the role of lymphedema for the distinction from Hennekam syndrome.
American journal of medical genetics. Part AGenotype-phenotype specificity in Menke-Hennekam syndrome caused by missense variants in exon 30 or 31 of CREBBP.
American journal of medical genetics. Part AAPOE and the Association of Fatty Acids With the Risk of Stroke, Coronary Heart Disease, and Mortality.
StrokeNovel mutation in CCBE 1 as a cause of recurrent hydrops fetalis from Hennekam lymphangiectasia-lymphedema syndrome-1.
Clinical case reportsFrom fish embryos to human patients: lymphangiogenesis in development and disease.
Current opinion in immunologyVan Maldergem syndrome and Hennekam syndrome: Further delineation of allelic phenotypes.
American journal of medical genetics. Part AHennekam Syndrome: A Case Report.
Annals of rehabilitation medicineProtein Losing Enteropathy in Hennekam Syndrome.
Indian journal of pediatricsLoss of ADAMTS3 activity causes Hennekam lymphangiectasia-lymphedema syndrome 3.
Human molecular geneticsDachsous1-Fat4 Signaling Controls Endothelial Cell Polarization During Lymphatic Valve Morphogenesis-Brief Report.
Arteriosclerosis, thrombosis, and vascular biologyExpanding the genotypic spectrum of CCBE1 mutations in Hennekam syndrome.
American journal of medical genetics. Part AIntestinal Lymphangiestasia With Hennekam Syndrome.
Journal of pediatric gastroenterology and nutritionA Multiplex Kindred with Hennekam Syndrome due to Homozygosity for a CCBE1 Mutation that does not Prevent Protein Expression.
Journal of clinical immunologyA novel CCBE1 mutation leading to a mild form of hennekam syndrome: case report and review of the literature.
BMC medical geneticsFunctional Dissection of the CCBE1 Protein: A Crucial Requirement for the Collagen Repeat Domain.
Circulation research[A complicated case study: Hennekam syndrome].
Zhongguo dang dai er ke za zhi = Chinese journal of contemporary pediatricsA Rare Cause of Chylothorax: Hennekam Syndrome.
Turkish thoracic journalAssociações
Organizações que acompanham esta doença — pra ter apoio e orientação
Ainda não temos associações cadastradas para Síndrome Hennekam.
É de uma associação que acompanha esta doença? Fale com a gente →
Comunidades
Grupos ativos de quem convive com esta doença aqui no Raras
Ainda não existe comunidade no Raras para Síndrome Hennekam
Pacientes, familiares e cuidadores se organizam em comunidades pra compartilhar experiências, fazer perguntas e se apoiar. Você pode ser o primeiro.
Tire suas dúvidas
Perguntas, dicas e experiências compartilhadas aqui na página
Participe da discussão
Faça login para postar dúvidas, compartilhar experiências e interagir com especialistas.
Fazer loginDoenças 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.
- Correlations between phenotype and gene region-specific episignatures in Rubinstein-Taybi syndrome and Menke-Hennekam syndrome.
- Skipping of Exon 20 in EP300: A Novel Variant Linked to Rubinstein-Taybi Syndrome With Atypical and Severe Clinical Manifestations.
- The complex network of p300/CBP regulation: Interactions, posttranslational modifications, and therapeutic implications.
- Identification of a novel, pathogenic CREBBP variant in a patient with Menke-Hennekam syndrome: a Case Report.
- A Novel EP300 Variant in an African American Girl With Global Developmental Delay and Leukemia.
Bases de dados e fontes oficiais
Identificadores e referências canônicas usadas para montar este verbete.
- ORPHA:2136(Orphanet)
- MONDO:0016256(MONDO)
- GARD:3318(GARD (NIH))
- Variantes catalogadas(ClinVar)
- Busca completa no PubMed(PubMed)
- Q5714797(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
