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Síndrome de Haddad
ORPHA:99803CID-10 · G47.3CID-11 · LD2F.1YDOENÇA RARA

A síndrome de Haddad é uma condição congênita rara em que a síndrome de hipoventilação central congênita (CCHS), ou síndrome de Ondine — que dificulta a respiração —, ocorre junto com a doença de Hirschsprung, que afeta o intestino grosso.

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Introdução

O que você precisa saber de cara

📋

A síndrome de Haddad é uma condição congênita rara em que a síndrome de hipoventilação central congênita (CCHS), ou síndrome de Ondine — que dificulta a respiração —, ocorre junto com a doença de Hirschsprung, que afeta o intestino grosso.

Publicações científicas
33 artigos
Último publicado: 2024 May

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
<1 / 1 000 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
60
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: G47.3
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (2)
0202010694
Sequenciamento completo do exoma (WES)genetic_test
0301070040
Atendimento em reabilitação — doenças rarasrehabilitation
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

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Sinais e sintomas

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

Partes do corpo afetadas

🧠
Neurológico
5 sintomas
🫃
Digestivo
2 sintomas
🫁
Pulmão
2 sintomas
👁️
Olhos
1 sintomas
👂
Ouvidos
1 sintomas
🦴
Ossos e articulações
1 sintomas

+ 5 sintomas em outras categorias

Características mais comuns

90%prev.
Estrabismo
Muito frequente (99-80%)
90%prev.
Apneia central do sono
Muito frequente (99-80%)
90%prev.
Fisiologia anormal do sistema nervoso autônomo
Muito frequente (99-80%)
90%prev.
Desregulação respiratória
Muito frequente (99-80%)
90%prev.
Hipoventilação central
Muito frequente (99-80%)
90%prev.
Megacólon agangliônico
Muito frequente (99-80%)
18sintomas
Muito frequente (8)
Frequente (4)
Ocasional (6)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 18 características clínicas mais associadas, ordenadas por frequência.

EstrabismoStrabismus
Muito frequente (99-80%)90%
Apneia central do sonoCentral sleep apnea
Muito frequente (99-80%)90%
Fisiologia anormal do sistema nervoso autônomoAbnormal autonomic nervous system physiology
Muito frequente (99-80%)90%
Desregulação respiratóriaBreathing dysregulation
Muito frequente (99-80%)90%
Hipoventilação centralCentral hypoventilation
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa2desde 2024
Total histórico33PubMed
Últimos 10 anos11publicações
Pico20152 papers
Linha do tempo
2024Hoje · 2026🧪 2016Primeiro ensaio clínico
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

3 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant, Multigenic/multifactorial.

ASCL1Achaete-scute homolog 1Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Transcription factor that plays a key role in neuronal differentiation: acts as a pioneer transcription factor, accessing closed chromatin to allow other factors to bind and activate neural pathways. Directly binds the E box motif (5'-CANNTG-3') on promoters and promotes transcription of neuronal genes. The combination of three transcription factors, ASCL1, POU3F2/BRN2 and MYT1L, is sufficient to reprogram fibroblasts and other somatic cells into induced neuronal (iN) cells in vitro. Plays a rol

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (1)
NGF-stimulated transcription
OUTRAS DOENÇAS (1)
Haddad syndrome
HGNC:738UniProt:P50553
PHOX2BPaired mesoderm homeobox protein 2BDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Involved in the development of several major noradrenergic neuron populations, including the locus coeruleus. Transcription factor which could determine a neurotransmitter phenotype in vertebrates. Enhances second-messenger-mediated activation of the dopamine beta-hydrolase and c-fos promoters, and of several enhancers including cAMP-response element and serum-response element

LOCALIZAÇÃO

Nucleus

MECANISMO DE DOENÇA

Central hypoventilation syndrome, congenital, 1

An autosomal dominant form of congenital central hypoventilation syndrome, a rare disorder characterized by abnormal control of respiration in the absence of neuromuscular or lung disease, or an identifiable brain stem lesion. A deficiency in autonomic control of respiration results in inadequate or negligible ventilatory and arousal responses to hypercapnia and hypoxemia.

EXPRESSÃO TECIDUAL(Baixa expressão)
Cólon sigmoide
4.1 TPM
Cólon transverso
1.5 TPM
Intestino delgado
0.8 TPM
Esôfago - Muscular
0.5 TPM
Esôfago - Junção
0.4 TPM
OUTRAS DOENÇAS (5)
neuroblastoma, susceptibility to, 2central hypoventilation syndrome, congenital, 1, with or without Hirschsprung diseaseHirschsprung disease-ganglioneuroblastoma syndromeneuroblastoma
HGNC:9143UniProt:Q99453
RETProto-oncogene tyrosine-protein kinase receptor RetDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Receptor tyrosine-protein kinase involved in numerous cellular mechanisms including cell proliferation, neuronal navigation, cell migration, and cell differentiation in response to glia cell line-derived growth family factors (GDNF, NRTN, ARTN, PSPN and GDF15) (PubMed:20064382, PubMed:20616503, PubMed:20702524, PubMed:21357690, PubMed:21454698, PubMed:24560924, PubMed:28846097, PubMed:28846099, PubMed:28953886, PubMed:31118272). In contrast to most receptor tyrosine kinases, RET requires not onl

LOCALIZAÇÃO

Cell membraneEndosome membrane

VIAS BIOLÓGICAS (4)
RET signalingFormation of the ureteric budFormation of the nephric ductNPAS4 regulates expression of target genes
MECANISMO DE DOENÇA

Hirschsprung disease 1

A disorder of neural crest development characterized by absence of enteric ganglia along a variable length of the intestine. It is the most common cause of congenital intestinal obstruction. Early symptoms range from complete acute neonatal obstruction, characterized by vomiting, abdominal distention and failure to pass stool, to chronic constipation in the older child.

EXPRESSÃO TECIDUAL(Tecido-específico)
Substância negra
6.3 TPM
Pituitária
4.8 TPM
Cerebelo
4.0 TPM
Cólon sigmoide
4.0 TPM
Brain Frontal Cortex BA9
3.8 TPM
OUTRAS DOENÇAS (12)
multiple endocrine neoplasia type 2Bpheochromocytomafamilial medullary thyroid carcinomamultiple endocrine neoplasia type 2A
HGNC:9967UniProt:P07949

Variantes genéticas (ClinVar)

733 variantes patogênicas registradas no ClinVar.

🧬 RET: NM_020975.6(RET):c.2940-1G>A ()
🧬 RET: NM_020975.6(RET):c.206del (p.Gly69fs) ()
🧬 RET: NM_020975.6(RET):c.3039+1G>A ()
🧬 RET: NM_020975.6(RET):c.1658G>T (p.Arg553Met) ()
🧬 RET: NM_020975.6(RET):c.249C>A (p.Asn83Lys) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 721 variantes classificadas pelo ClinVar.

324
397
VUS (44.9%)
Benigna (55.1%)
VARIANTES MAIS SIGNIFICATIVAS
ASCL1: NM_004316.4(ASCL1):c.115G>A (p.Ala39Thr) [Uncertain significance]
PHOX2B: NM_003924.4(PHOX2B):c.322G>T (p.Ala108Ser) [Uncertain significance]
PHOX2B: NM_003924.4(PHOX2B):c.163T>G (p.Ser55Ala) [Uncertain significance]
PHOX2B: NM_003924.4(PHOX2B):c.248A>G (p.Tyr83Cys) [Uncertain significance]
PHOX2B: NM_003924.4(PHOX2B):c.262G>A (p.Asp88Asn) [Uncertain significance]

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome de Haddad

🗺️

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.

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Publicações mais relevantes

🥉Melhor nível de evidência: Relato de caso
Timeline de publicações
11 papers (10 anos)
#1

Further description of two individuals with de novo p.(Glu127Lys) missense variant in the ASCL1 gene.

Clinical genetics2024 May

Achaete-Scute Family basic-helix-loop-helix (bHLH) Transcription Factor 1 (ASCL1) is a proneural transcription factor involved in neuron development in the central and peripheral nervous system. While initially suspected to contribute to congenital central hypoventilation syndrome-1 (CCHS) with or without Hirschsprung disease (HSCR) in three individuals, its implication was ruled out by the presence, in one of the individuals, of a Paired-like homeobox 2B (PHOX2B) heterozygous polyalanine expansion variant, known to cause CCHS. We report two additional unrelated individuals sharing the same sporadic ASCL1 p.(Glu127Lys) missense variant in the bHLH domain and a common phenotype with short-segment HSCR, signs of dysautonomia, and developmental delay. One has also mild CCHS without polyalanine expansion in PHOX2B, compatible with the diagnosis of Haddad syndrome. Furthermore, missense variants with homologous position in the same bHLH domain in other genes are known to cause human diseases. The description of additional individuals carrying the same variant and similar phenotype, as well as targeted functional studies, would be interesting to further evaluate the role of ASCL1 in neurocristopathies.

#2

A Deeper Curse: A Hirschsprung Patient's Evaluation Unmasks a Rare Association with Congenital Central Hypoventilation Syndrome and Neuroblastoma.

European journal of pediatric surgery reports2022 Jan

We present a rare case of a 2-year-old male patient referred for primary evaluation of constipation and ultimately treatment of Hirschsprung disease (HSCR) whose preoperative workup incidentally revealed a posterior paraspinal mass. Following the biopsy of the mass, the patient exhibited hypoventilation and hypoxia requiring a delayed extubation, raising suspicion for congenital central hypoventilation syndrome (CCHS). We focus on the known history of associations between HSCR and CCHS, in addition to recently found genetic mutations in paired-like homeobox 2B that link HSCR, CCHS, and neuroblastoma.

#3

Sonographic findings of total colonic aganglionosis in a neonate with Haddad syndrome: A case report.

Journal of clinical ultrasound : JCU2022 Jul

Haddad syndrome is a rare congenital disorder characterized by congenital central hypoventilation syndrome and Hirschsprung disease. Total colonic aganglionosis is a rare and long-segment form of Hirschsprung disease, which is primarily diagnosed using contrast enemas. However, the diagnostic performance of contrast enemas is relatively low, making the diagnosis of total colonic aganglionosis challenging. In neonates, ultrasound may be used as an additional imaging modality for the diagnosis of Hirschsprung disease. We describe the unique sonographic findings of total colonic aganglionosis in a term neonate with failure to pass meconium and respiratory distress, who was subsequently diagnosed with Haddad syndrome.

#4

Clinical features of children with Haddad syndrome: A single-center experience.

Journal of pediatric surgery2020 Mar

Haddad syndrome (HS) is a very rare disease considered a form of neurocristopathy. It is characterized by a combination of congenital central hypoventilation syndrome (CCHS) and Hirschsprung's disease (HD). We report the clinical features and disease progression of HS to provide better care for HS patients by achieving an earlier diagnosis and optimal treatment. Medical records of patients diagnosed with HS from 2005 to 2016 were retrospectively reviewed. Demographic data including gestational age, birth weight and height, and paired-like homeobox 2b (PHOX2B) gene mutation were collected. Seven males and three females were identified (mean gestational age 39.76 ± 1.49 weeks, mean birth weight 3117.5 ± 288.9 g). PHOX2B gene mutation was identified in all patients. Immediate ventilation care after birth was required in five patients due to poor respiration. The current median age of the children is 5.4 years (range, 1.8-10.1). Tracheostomy was performed in nine patients. Eight patients required sleep ventilation and two patients, 24-h continuous ventilation support. Six patients showed rectosigmoid aganglionosis and four patients exhibited total colonic aganglionosis, of these one had aganglionosis extended to the distal small bowel. Soiling was observed in seven patients (5 with laparoscopy-assisted transanal endorectal pull-through and 2 with Duhamel procedure) and one patient showed grade 2 constipation with Duhamel procedure. Six patients had developmental delay. All patients are alive. HS may require lifelong medical care. This study could be helpful to understand the clinical features of HS including associated abnormalities and disease progression. By assisting to understand the clinical features, we could provide better care for HS patients by achieving an earlier diagnosis and appropriate treatment. Prognosis study. Level IV.

#5

A novel mutation which causes a frameshift in the PHOX2B gene causes Haddad syndrome.

Clinical dysmorphology2020 Jul

Publicações recentes

Ver todas no PubMed

📚 EuropePMC20 artigos no totalmostrando 10

2024

Further description of two individuals with de novo p.(Glu127Lys) missense variant in the ASCL1 gene.

Clinical genetics
2022

A Deeper Curse: A Hirschsprung Patient's Evaluation Unmasks a Rare Association with Congenital Central Hypoventilation Syndrome and Neuroblastoma.

European journal of pediatric surgery reports
2022

Sonographic findings of total colonic aganglionosis in a neonate with Haddad syndrome: A case report.

Journal of clinical ultrasound : JCU
2020

A novel mutation which causes a frameshift in the PHOX2B gene causes Haddad syndrome.

Clinical dysmorphology
2019

Neonatal Congenital Central Hypoventilation Syndrome: Why We Should not Sleep on it. Literature Review of Forty-two Neonatal Onset Cases.

Current pediatric reviews
2020

Clinical features of children with Haddad syndrome: A single-center experience.

Journal of pediatric surgery
2017

Haddad syndrome novel association with BRAF mutation.

Journal of neonatal-perinatal medicine
2016

Congenital central hypoventilation syndrome associated with Hirschsprung's Disease: case report and literature review.

Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo
2015

Novel mutation-deletion in the PHOX2B gene of the patient diagnosed with Neuroblastoma, Hirschsprung's Disease, and Congenital Central Hypoventilation Syndrome (NB-HSCR-CCHS) Cluster.

Journal of genetic syndromes &amp; gene therapy
2015

Congenital hypoventilation syndrome and Hirschsprung's disease - Haddad syndrome: A neonatal case presentation.

Journal of neonatal-perinatal medicine
Ver todos os 20 no EuropePMC

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

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Comunidades

Grupos ativos de quem convive com esta doença aqui no Raras

Ainda não existe comunidade no Raras para Síndrome de Haddad

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Doenças relacionadas

Doenças com sintomas parecidos — ajudam quem ainda está buscando diagnóstico

Ordenadas pelo número de sintomas em comum.

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. Further description of two individuals with de novo p.(Glu127Lys) missense variant in the ASCL1 gene.
    Clinical genetics· 2024· PMID 38287449mais citado
  2. A Deeper Curse: A Hirschsprung Patient's Evaluation Unmasks a Rare Association with Congenital Central Hypoventilation Syndrome and Neuroblastoma.
    European journal of pediatric surgery reports· 2022· PMID 36466361mais citado
  3. Sonographic findings of total colonic aganglionosis in a neonate with Haddad syndrome: A case report.
    Journal of clinical ultrasound : JCU· 2022· PMID 35080777mais citado
  4. Clinical features of children with Haddad syndrome: A single-center experience.
    Journal of pediatric surgery· 2020· PMID 30850150mais citado
  5. A novel mutation which causes a frameshift in the PHOX2B gene causes Haddad syndrome.
    Clinical dysmorphology· 2020· PMID 32073407mais citado
  6. Neonatal Congenital Central Hypoventilation Syndrome: Why We Should not Sleep on it. Literature Review of Forty-two Neonatal Onset Cases.
    Curr Pediatr Rev· 2019· PMID 31223092recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:99803(Orphanet)
  2. MONDO:0020493(MONDO)
  3. GARD:16909(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Artigo Wikipedia(Wikipedia)
  7. Q979129(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

Síndrome de Haddad
Compêndio · Raras BR

Síndrome de Haddad

ORPHA:99803 · MONDO:0020493
Prevalência
<1 / 1 000 000
Casos
60 casos conhecidos
Herança
Autosomal dominant, Multigenic/multifactorial
CID-10
G47.3 · Apnéia de sono
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1275808
EuropePMC
Wikidata
Wikipedia
Papers 10a
Evidência
🥉 Relato de caso
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