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Cranioraquisquisis
ORPHA:63260CID-10 · Q00.1CID-11 · LA00.00DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Início neonatalHerança Complex/Unknown

Craniorquisquise é a forma mais grave de defeito do tubo neural em que o cérebro e a medula espinhal permanecem abertos em graus variados. É uma malformação congênita muito rara do sistema nervoso central.

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Introdução

O que você precisa saber de cara

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EM LINGUAGEM SIMPLES

A cranioraquisquisis é uma malformação congênita rara e grave em que o cérebro e a medula espinhal permanecem abertos. Ela se manifesta desde o período neonatal, apresentando alterações como anencefalia e defeitos abertos na coluna vertebral. Não há medicamentos específicos dispensados na farmácia do SUS nem cura aprovada para a anomalia. O cuidado à família e ao paciente ocorre por meio dos serviços de saúde e reabilitação da rede pública de referência.

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Informacoes curadas por IA — podem conter imprecisoes

Craniorquisquise é a forma mais grave de defeito do tubo neural em que o cérebro e a medula espinhal permanecem abertos em graus variados. É uma malformação congênita muito rara do sistema nervoso central.

Publicações científicas
171 artigos
Último publicado: 2025 Apr
🏥
SUS: Cobertura mínimaScore: 15%
5 procedimentos SIGTAPCID-10: Q00.1
🇧🇷Dados SUS / DATASUS
EXAMES E PROCEDIMENTOS RELACIONADOS (5)
•
Cariótipo — bandas G, Q ou R
•
Pesquisa de microdeleções/microduplicações por FISH
•
Sequenciamento completo do exoma (WES)
•
Dosagem de alfa-fetoproteína
•
Atendimento em reabilitação — doenças raras
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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

Características mais comuns

90%prev.
Mielomeningocele
Muito frequente (99-80%)
90%prev.
Anencefalia
Muito frequente (99-80%)
90%prev.
Disrafismo espinhal
Muito frequente (99-80%)
90%prev.
Espinha bífida cervical
Muito frequente (99-80%)
17%prev.
Esterno bífido
Ocasional (29-5%)
17%prev.
Onfalocele
Ocasional (29-5%)
9sintomas
Muito frequente (4)
Ocasional (5)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 9 características clínicas mais associadas, ordenadas por frequência.

MielomeningoceleMyelomeningocele
Muito frequente (99-80%)90%
AnencefaliaAnencephaly
Muito frequente (99-80%)90%
Disrafismo espinhalSpinal dysraphism
Muito frequente (99-80%)90%
Espinha bífida cervicalCervical spina bifida
Muito frequente (99-80%)90%
Esterno bífidoBifid sternum
Ocasional (29-5%)17%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa3desde 2023
Total histórico171PubMed
Últimos 10 anos44publicações
Pico20237 papers
Linha do tempo
2023Hoje · 2026
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

1 gene identificado com associação a esta condição.

Multigenic/multifactorialNot applicable
DACT1Dapper homolog 1Disease-causing germline mutation(s) (loss of function) inTolerante
VIAS BIOLÓGICAS (1)
Degradation of DVL
MECANISMO DE DOENÇA

Neural tube defects

Congenital malformations of the central nervous system and adjacent structures related to defective neural tube closure during the first trimester of pregnancy. Failure of neural tube closure can occur at any level of the embryonic axis. Common NTD forms include anencephaly, myelomeningocele and spina bifida, which result from the failure of fusion in the cranial and spinal region of the neural tube. NTDs have a multifactorial etiology encompassing both genetic and environmental components.

VIAS REACTOME (1)
EXPRESSÃO TECIDUAL(Ubíquo)
Aorta
39.4 TPM
Nervo tibial
38.2 TPM
Cérebro - Hemisfério cerebelar
37.4 TPM
Artéria coronária
33.7 TPM
Cerebelo
28.9 TPM
OUTRAS DOENÇAS (4)
Townes-Brocks syndrome 2craniorachischisisTownes-Brocks syndromeoccipital encephalocele
HGNC:17748UniProt:Q9NYF0

Variantes genéticas (ClinVar)

25 variantes patogênicas registradas no ClinVar.

🧬 DACT1: NM_001079520.2(DACT1):c.763C>T (p.Leu255=) ()
🧬 DACT1: NM_001079520.2(DACT1):c.1703C>T (p.Thr568Met) ()
🧬 DACT1: GRCh37/hg19 14q22.3-23.2(chr14:55667390-64447598)x1 ()
🧬 DACT1: GRCh37/hg19 14q23.1-32.33(chr14:58894502-107227240)x3 ()
🧬 DACT1: GRCh37/hg19 14q22.3-24.1(chr14:57588965-68334517)x3 ()
Ver todas no ClinVar

Vias biológicas (Reactome)

1 via biológica associada aos genes desta condição.

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 — Cranioraquisquisis

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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

Timeline de publicações
45 papers (10 anos)
#1

Craniorachischisis Totalis: A Detailed Case Report.

Iranian journal of child neurology2025

Neural tube defects (NTDs) are severe congenital anomalies resulting from improper neural tube closure. Craniorachischisis totalis, the most extreme form, involves failure of neural tube formation along the entire cranio-spinal axis. This rare condition is fatal, with limited reported cases globally. We report a case of a 35-year-old G3P1L1A1 woman admitted at 20 weeks and 4 days gestation for medical termination of pregnancy following second-trimester ultrasound findings of anencephaly and spinal dysraphism. The patient began folic acid supplementation only after pregnancy confirmation. The fetus exhibited acrania, bifid vertebrae, exposed neural tissue, frog-eye deformity, and limb contractures. Butterfly vertebrae was observed in infantogram. Retrospective ultrasound review revealed an absent cranial vault, disorganized brain matter, and a large open spinal defect extending to the upper lumbar region. Genetic and infectious panels were largely unremarkable, except for reactive rubella IgG. Craniorachischisis totalis arises from failure of neural tube closure, potentially linked to genetic mutations, folate deficiency, and multiple maternal risk factors. Here, we also revisit the various theories of neural tube closure. Early prenatal diagnosis and counseling are critical for managing craniorachischisis. Periconceptional folic acid supplementation remains the most effective preventive measure.

#2

Concomitant omphalocele, craniorachischisis and ectopic cordis associated with trisomy 18 diagnosed in first trimester.

Taiwanese journal of obstetrics & gynecology2025 Mar

We present a rare case of trisomy 18 of maternal origin in a pregnancy with omphalocele, craniorachischisis, and ectopia cordis. A 38-year-old woman, G3P1A1, was diagnosed with fetal anencephaly, an extrathoracic heart (ectopic cordis), deformity of spine and a stomach-and-intestine-containing omphalocele by prenatal ultrasound at 12 weeks of gestation. The patient's husband was 39 years old and healthy. The patient had no significant past medical history. She was a nonsmoker, with a pre-pregnancy BMI of 23.7 and was not diabetic. There was no family history of malformations, diseases, or teratogenic medication. The patient had not received assisted reproductive technology during this pregnancy. The pregnancy was terminated in the 13th gestational week. Additional anomalies detected after termination of the pregnancy included small and triangular face, abnormal posturing of hands, clubfoot and craniorachischisis. Crown-heel length was 5.5 cm consistent with a 12-13-week gestational age. Postnatal cytogenetic analysis of chorionic villi obtained by placental sampling revealed a karyotype of 47, XX + 18. Polymorphic DNA marker analysis by quantitative fluorescent polymerase chain reaction (QF-PCR) assays showed a maternal origin of the extra chromosome 18. The concomitant omphalocele, ectopia cordis and craniorachischisis may be related to trisomy 18. Genetic analysis of the postmortem tissue and the analysis of the parental origin of the extra chromosome 18 using QF-PCR, provide valuable information for genetic counseling.

#3

Neural Tube Defects in Fetus Exposed to Valproate.

Maternal-fetal medicine (Wolters Kluwer Health, Inc.)2025 Apr
#4

SLMAP3 is essential for neurulation through mechanisms involving cytoskeletal elements, ABP, and PCP.

Life science alliance2024 Dec

SLMAP3 is a tail-anchored membrane protein that targets subcellular organelles and is believed to regulate Hippo signaling. The global loss of SLMAP3 causes late embryonic lethality in mice, with some embryos exhibiting neural tube defects such as craniorachischisis. We show here that SLMAP3 -/- embryos display reduced length and increased width of neural plates, signifying arrested convergent extension. The expression of planar cell polarity (PCP) components Dvl2/3 and the activity of the downstream targets ROCK2, cofilin, and JNK1/2 were dysregulated in SLMAP3 -/- E12.5 brains. Furthermore, the cytoskeletal proteins (γ-tubulin, actin, and nestin) and apical components (PKCζ and ZO-1) were mislocalized in neural tubes of SLMAP3 -/- embryos, with a subsequent decrease in colocalization of PCP proteins (Fzd6 and pDvl2). However, no changes in PCP or cytoskeleton proteins were found in cultured neuroepithelial cells depleted of SLMAP3, suggesting an essential requirement for SLMAP3 for these processes in vivo for neurulation. The loss of SLMAP3 had no impact on Hippo signaling in SLMAP3 -/- embryos, brains, and neural tubes. Proteomic analysis revealed SLMAP3 in an interactome with cytoskeletal components, including nestin, tropomyosin 4, intermediate filaments, plectin, the PCP protein SCRIB, and STRIPAK members in embryonic brains. These results reveal a crucial role of SLMAP3 in neural tube development by regulating the cytoskeleton organization and PCP pathway.

#5

Craniorachischisis in a 33-week-old Female Fetus: A Case Report.

Acta medica Philippina2024

We report the case of a 33-week-old female fetus born with craniorachischisis to a gravida 5, para 4 (3104) mother with no previous history of conceiving a child with a neural tube defect. Craniorachischisis is characterized by anencephaly and an open defect extending from the brain to the spine and is the most severe and fatal type of neural tube defect. Although the cause of neural tube defects is hypothesized to be multifactorial and is usually sporadic, the risk is increased in neonates born to mothers with a family history or a previous pregnancy with neural tube defect, both of which are not present in the index case. This case is unique in that only during the fifth pregnancy did the couple conceive a child with a neural tube defect, emphasizing that folic acid supplementation, the sole preventive measure proven to decrease the risk of neural tube defects, remains to be important in the periconceptual period for all women of childbearing age.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC50 artigos no totalmostrando 44

2025

Neural Tube Defects in Fetus Exposed to Valproate.

Maternal-fetal medicine (Wolters Kluwer Health, Inc.)
2025

Craniorachischisis Totalis: A Detailed Case Report.

Iranian journal of child neurology
2025

Concomitant omphalocele, craniorachischisis and ectopic cordis associated with trisomy 18 diagnosed in first trimester.

Taiwanese journal of obstetrics & gynecology
2024

SLMAP3 is essential for neurulation through mechanisms involving cytoskeletal elements, ABP, and PCP.

Life science alliance
2024

Common on "craniorachischisis in a stillbirth associated with maternal smoking".

Taiwanese journal of obstetrics & gynecology
2024

Craniorachischisis in a 33-week-old Female Fetus: A Case Report.

Acta medica Philippina
2024

Recurrent neural tube defect and craniorachischisis detected in the first trimester and associated with maternal smoking.

Taiwanese journal of obstetrics & gynecology
2024

Craniorachischisis in a stillbirth associated with maternal smoking.

Taiwanese journal of obstetrics & gynecology
2023

Lethal Neural Tube Defects: Reports of Anencephaly and Craniorachischisis Cases and Literature Review.

Case reports in obstetrics and gynecology
2023

Strengthening capacity of health workers to diagnose birth defects in Ugandan hospitals from 2015 to 2021.

BMC medical education
2023

Neural tube defects as a cause of death among stillbirths, infants, and children younger than 5 years in sub-Saharan Africa and southeast Asia: an analysis of the CHAMPS network.

The Lancet. Global health
2023

Craniorachischisis totalis.

The Pan African medical journal
2023

Brain malformations in diprosopia observed in clinical cases, museum specimens and artistic representations.

Orphanet journal of rare diseases
2023

Loss-of-Function of p21-Activated Kinase 2 Links BMP Signaling to Neural Tube Patterning Defects.

Advanced science (Weinheim, Baden-Wurttemberg, Germany)
2022

Pax3 Hypomorphs Reveal Hidden Pax7 Functional Genetic Compensation in Utero.

Journal of developmental biology
2023

Prenatal diagnosis of acrania/exencephaly/anencephaly sequence (AEAS): additional structural and genetic anomalies.

Archives of gynecology and obstetrics
2022

Prenatal diagnosis of craniorachischisis totalis.

BMJ case reports
2022

Rare and severe neural tube defect: Craniorachischisis totalis.

Clinical case reports
2022

[Craniorachischisis: a case report].

Revista medica del Instituto Mexicano del Seguro Social
2022

Periconceptional folic acid use prevents both rare and common neural tube defects in China.

Birth defects research
2022

Vangl2-environment interaction causes severe neural tube defects, without abnormal neuroepithelial convergent extension.

Disease models & mechanisms
2021

Fatal fetal abnormality Irish live-born survival-an observational study.

Journal of community genetics
2021

Gene Environment Interactions in the Etiology of Neural Tube Defects.

Frontiers in genetics
2021

Comparison of inherited neural tube defects in companion animals and livestock.

Birth defects research
2020

Maternal Use of Specific Antidepressant Medications During Early Pregnancy and the Risk of Selected Birth Defects.

JAMA psychiatry
2021

Fetal Open and Closed Spina Bifida on a Routine Scan at 11 Weeks to 13 Weeks 6 Days.

Journal of ultrasound in medicine : official journal of the American Institute of Ultrasound in Medicine
2020

Association between rare variants in specific functional pathways and human neural tube defects multiple subphenotypes.

Neural development
2020

The Spectrum of Congenital Central Nervous System Anomalies Among Stillborn: An Autopsy Based Study.

Annals of neurosciences
2021

Craniorachischisis with Exencephaly.

Fetal and pediatric pathology
2019

A review of genetic factors underlying craniorachischisis and omphalocele: Inspired by a unique trisomy 18 case.

American journal of medical genetics. Part A
2019

Variants identified in PTK7 associated with neural tube defects.

Molecular genetics & genomic medicine
2018

Prenatal Sonographic Image of Sirenomelia with Anencephaly and Craniorachischisis Totalis.

Case reports in obstetrics and gynecology
2018

Multidisciplinary approach of assessing malformed fetuses exemplified in a rare case of pentalogy of Cantrell associated with craniorachischisis, pulmonary extrophy and right-sided aortic arch with aberrant brachiocephalic artery.

Romanian journal of morphology and embryology = Revue roumaine de morphologie et embryologie
2018

Insights into the Etiology of Mammalian Neural Tube Closure Defects from Developmental, Genetic and Evolutionary Studies.

Journal of developmental biology
2017

Prenatal diagnosis of sirenomelia with anencephaly and craniorachischisis totalis: A case report study.

Medicine
2018

A targeted sequencing panel identifies rare damaging variants in multiple genes in the cranial neural tube defect, anencephaly.

Clinical genetics
2018

Identification and characterization of a novel chemically induced allele at the planar cell polarity gene Vangl2.

Mammalian genome : official journal of the International Mammalian Genome Society
2017

A detailed musculoskeletal study of a fetus with anencephaly and spina bifida (craniorachischisis), and comparison with other cases of human congenital malformations.

Journal of anatomy
2016

Newborn with meroanencephaly: Surviving all odds.

Journal of pediatric neurosciences
2016

[Congenital anomalies of poor prognosis. Genetics Consensus Committee].

Revista chilena de pediatria
2016

Diprosopus: Systematic review and report of two cases.

Birth defects research. Part A, Clinical and molecular teratology
2016

Craniorachischisis Totalis with Congenital Diaphragmatic Hernia-A Rare Presentation of Fryns Syndrome.

Fetal and pediatric pathology
2015

A Study on The Incidence of Neural Tube Defects in A Tertiary Care Hospital Over A Period of Five Years.

Journal of clinical and diagnostic research : JCDR
2015

Role of the planar cell polarity gene Protein tyrosine kinase 7 in neural tube defects in humans.

Birth defects research. Part A, Clinical and molecular teratology
Ver todos os 50 no EuropePMC

Associações

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 Cranioraquisquisis e no aconselhamento genético da família.

Vai consultar um especialista? Confirme o registro dele no conselho.
Conselhos e sociedades

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

Respostas geradas por IA a partir das fontes citadas

É a forma mais grave de defeito do tubo neural, na qual o cérebro e a medula espinhal não se fecham durante o desenvolvimento fetal. Trata-se de uma anomalia morfológica congênita muito rara identificada pelo CID-10 Q00.1.

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.

  1. Neural Tube Defects in Fetus Exposed to Valproate.
    Maternal-fetal medicine (Wolters Kluwer Health, Inc.)2025PMID 40620271
  2. ORPHA:63260
    Orphanet
  3. GARD:10504
    GARD (NIH)
  4. Q55788430
    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.

Citar este verbete

Raras. (s.d.). Cranioraquisquisis. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/cranioraquisquisis

Formato APA. Conteúdo sob CC BY 4.0 — reuso livre com atribuição.

Conteúdo mantido por Agente Raras · Médicos e pesquisadores podem colaborar

Compêndio · Raras BR

Cranioraquisquisis

ORPHA:63260 · MONDO:0018969
🇧🇷 Brasil SUS
SIGTAP
5 procedimentos
Geral
CID-10
Q00.1 · Craniorraquisquise
CID-11
Início
Infancy, Neonatal
MedGen
UMLS
C0152426
EuropePMC
Wikidata
Papers 10a

📋 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
Dado público estruturado
fonte: Wikidata
Rara