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Disgenesia espinhal segmentar
ORPHA:656126CID-10 · Q76.0DOENÇA RARA
Também conhecida comoSSD
Sinônimos clínicos: SSD

Anomalias vertebrais congênitas são um conjunto de malformações da coluna vertebral. A maioria, cerca de 85%, não é clinicamente significativa, mas podem causar compressão da medula espinhal ao deformar o canal vertebral ou causar instabilidade. Esta condição ocorre no útero. As anomalias vertebrais congênitas incluem alterações na forma e no número das vértebras.

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Introdução

O que você precisa saber de cara

Mantido pelo Disease Twin100% com fonte · atualizado 29/09/2026
Informacoes curadas por IA — podem conter imprecisoes

Visão geral

A disgenesia espinhal segmentar (em inglês, segmental spinal dysgenesis) é uma condição congênita rara catalogada sob o código MONDO:0958275 e classificada na CID-10 sob o código Q76.0. No momento, dados sobre sua prevalência exata, padrão de herança e faixa etária típica de início não estão consolidados nas bases oficiais de referência.[1]

Causas genéticas

Até o momento, não foram estabelecidos genes específicos com relação causal comprovada associados a essa condição nos registros analisados.[1][2]

Fontes numeradas em Referências.

Conteúdo informativo gerado e mantido automaticamente a partir de fontes oficiais (Orphanet, HPO, OMIM, SUS). Não substitui avaliação médica.

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EM LINGUAGEM SIMPLES

A disgenesia espinhal segmentar é uma malformação congênita rara que afeta a coluna vertebral e a medula espinhal. Ela faz parte do grupo dos disrafismos espinhais, causados por falhas no desenvolvimento embrionário da medula. Não há remédios específicos para curar a condição, e o acompanhamento busca estabilizar a coluna e promover a reabilitação física. No SUS, a condição não possui um protocolo clínico oficial (PCDT), mas o sistema oferece serviços de diagnóstico e atendimento em reabilitação para doenças raras.

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Informacoes curadas por IA — podem conter imprecisoes

Anomalias vertebrais congênitas são um conjunto de malformações da coluna vertebral. A maioria, cerca de 85%, não é clinicamente significativa, mas podem causar compressão da medula espinhal ao deformar o canal vertebral ou causar instabilidade. Esta condição ocorre no útero. As anomalias vertebrais congênitas incluem alterações na forma e no número das vértebras.

Publicações científicas
53 artigos
Último publicado: 2025 Nov 5
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SUS: Cobertura mínimaScore: 15%
5 procedimentos SIGTAPCID-10: Q76.0
🇧🇷Dados SUS / DATASUS
EXAMES E PROCEDIMENTOS RELACIONADOS (5)
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Cariótipo — bandas G, Q ou R
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Pesquisa de microdeleções/microduplicações por FISH
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Sequenciamento completo do exoma (WES)
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Dosagem de alfa-fetoproteína
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Atendimento em reabilitação — doenças raras
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Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico53PubMed
Últimos 10 anos30publicações
Pico20215 papers
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2025Hoje · 2026📈 2021Ano de pico
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

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Nenhum gene associado encontrado

Os dados genéticos desta condição ainda estão sendo catalogados.

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

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Onde tratar no SUS

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

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Publicações mais relevantes

Timeline de publicações
31 papers (10 anos)
#1

ZFHX3-associated neural tube defect.

BMJ case reports2025 Nov 05

The zinc finger homeobox 3 (ZFHX3) gene encodes a transcription factor involved in neurodevelopment and organogenesis. ZFHX3 haploinsufficiency is linked to intellectual disability, epilepsy and neurodevelopmental defects, but its potential involvement in neural tube defects (NTDs) and related structural anomalies is unknown. We report a female proband with a de novo heterozygous ZFHX3 variant (NM_006885.3: c.5876 A>C, p.(Gln1959Pro), identified via exome sequencing. She presented with spina bifida occulta, segmental spinal dysgenesis, bilateral clubfeet, bicuspid aortic valve and genital anomaly. This report suggests an expanded phenotypic spectrum of ZFHX3-associated disorders. Given the known interactions of ZFHX3 with Wnt/β-catenin, mTOR and Hippo signalling pathways, we hypothesise that disruptions in these networks could contribute to NTDs and skeletal defects. No functional studies were performed, so causality cannot be established. Further research and reports of similar phenotypes in ZFHX3 variants are needed to confirm its role in NTDs and other congenital structural anomalies.

#2

Segmental spinal dysgenesis - a rare type of spinal dysraphism.

Pediatric radiology2025 Dec

Segmental spinal dysgenesis is a rare and complex congenital anomaly that affects the spinal cord. It is hypothesized to be a notochord malformation. Patients generally present with spastic paraparesis and a neurogenic bladder. It is characterized by focal spinal cord dysgenesis and kyphoscoliotic deformity. We present the case of a 2-year-old boy who presented to the outpatient department of our hospital with complaints of recurrent urinary tract infection and fever. On examination, he had bilateral clubfoot, kyphoscoliotic deformity, and paraparesis. Further examination by micturating cystourethrogram revealed bilateral grade V vesico-ureteric reflux. Cystoscopy ruled out a posterior urethral valve. Magnetic resonance imaging of the spine was conducted to evaluate any neurological cause, which revealed a high blunt ending of the spinal cord at the dorsal level 10, with the absence of spinal cord tissue between dorsal 10 and sacral 2 level. Bulky cord-like tissue was noted from the sacral 2-4 level. These findings were associated with a syrinx formation and multiple vertebral malformations. The patient was managed conservatively. Spina bifida is a congenital anomaly resulting from incomplete neural tube development (see Image. Infant With Spina Bifida). The term "spina bifida" is nonspecific and refers to any degree of neural tube closure defect. This condition can be divided into 2 categories—spina bifida occulta and spina bifida aperta. Spina bifida occulta, also known as closed spinal dysraphism, is the mildest form of neural tube defect (NTD), characterized by a concealed vertebral defect with minimal neural involvement. Spina bifida aperta, also known as open spinal dysraphism, refers to a defect in which neural tissue is exposed and communicates with the external environment, such as in meningocele, myelomeningocele, and myeloschisis (see Image. Types of Spina Bifida). These conditions result in a wide range of neurological impairments. Spina bifida is often associated with several other developmental abnormalities, highlighting the importance of an interprofessional medical approach to optimize patient survival and outcomes. Atypical variants of spinal bifida include segmental spinal dysgenesis, lipomyelomeningocele, human tail, membranous meningocele, and myeloschisis. These variants are associated with autonomic dysfunction, kyphotic deformity, and lower limb anomalies.

#3

Atypical Variants of Spinal Dysraphism: A Case Series.

Journal of the West African College of Surgeons2025

The aim of this study is to present and discuss atypical instances of spina bifida (SB) within a Nigerian paediatric cohort, highlighting their distinctive clinicoradiological features. Additionally, a brief literature review is provided to contextualise these congenital anomalies. This series comprises eight rare cases of SB managed in a Nigerian neurosurgical facility. Additionally, a brief literature review is provided to contextualise these congenital anomalies. This case series comprises eight rare cases of SB managed in a Nigerian neurosurgical facility. Amongst these, four cases exhibited segmental spinal dysgenesis (SSD; one thoracolumbar, one lumbar, and two sacral). Each of these cases demonstrated diverse associated musculoskeletal, cutaneous, and perineal anomalies, accompanied by varying degrees of neurological dysfunction. Other cases included lipomyelomeningocele (LMMC), human tail (HT), membranous meningocele, and myeloschisis (MSS). Autonomic dysfunction was a common feature in all of the cases, whilst two of the patients presented with congenital kyphotic spinal deformity. Lower limb anomalies varied, including congenital talipes equinovarus deformity, pes planus, congenital calcaneovagus deformity, rocker bottom feet, clinodactyly, and tetrapolydactyly. Remarkably, none of the patients exhibited clinical features indicative of hydrocephalus. SSD, LMMC, HT, membranous meningocele, and MSS represent atypical forms of SB in the Nigerian paediatric population. Early neuroimaging of patients with suspected spinal dysraphism is crucial, as it may reveal a spectrum of diverse vertebral anomalies associated with this neurological condition within the African population.

#4

Optimizing sacral screw fixation in patients with caudal regression syndrome.

Spine deformity2025 Jan

The aim of this study is to evaluate and compare techniques and outcomes associated with two different technique of pelvic screw insertion in patients with caudal spine absence. A cohort of patients with varying degrees of caudal structural regression, serves as the focal point of this investigation. Pelvic configurations were classified based on established criteria to facilitate comparative analysis. Each patient underwent spinal surgical interventions, with a follow-up period extending beyond 2 years. The primary surgical interventions predominantly involved spinal stabilization coupled with correction of scoliosis and kyphosis through one or two pairs of pelvic screws. In this study, we investigated a cohort of 22 patients with caudal spine absence, encompassing diverse conditions, such as lumbo-sacral aplasia, hemisacrum, and lumbar absence, with preserved sacrum. Following spinal surgery, notable improvements were observed in scoliosis and pathological lumbar kyphosis, with several patients achieving significant functional milestones such as independent ambulation. There were no significant differences in short-term complications between patients undergoing single versus double pair pelvic screw implantation. Long-term complications, primarily non-fusion, were notably more prevalent in patients undergoing fixation with a single pair of pelvic screws. Surgical intervention, particularly spinopelvic fixation, demonstrated promising outcomes in terms of improving spinal deformities. The implantation of two pairs of pelvic screws demonstrates greater reliability compared to the insertion of a single pair, diminishing the risk of non-fusion.

#5

Segmental Spinal Aplasia: Anatomical Variations and Treatment Insights.

Global spine journal2025 Apr

Study DesignRetrospective Cohort Study.ObjectiveThe study aimed to analyze anatomical variants of segmental spinal aplasia (SSA) and investigate factors influencing surgical treatment outcomes, with a specific focus on the incidence of complications.MethodsThe study focused on patients with SSA treated at a single medical center, with over two years of follow-up. Neurological function changes were evaluated using the modified Japanese Orthopedic Scale (mJOA). Functional independence was measured using the Functional Independence Measure (FIM/WeeFIM) scale, and complications, well-being, and reoperation instances were documented. Statistical analyses used ANOVA and Kruskal-Wallis test.ResultsThe predominant localization of SSA in 36 own cases occurs near or at the level of the thoracolumbar junction, often accompanied by significant spinal cord narrowing and a low position of the conus medullaris. Additionally, it frequently presents with aplasia of the lower ribs. Cervicothoracic SSA was more commonly associated with segmentation disorders (P = .04). The most common early complications were wound problems (17%) and neurological deterioration (17%); the most common late complications were: non-fusion (34%); 38% of patients required one or more revision surgery. The type, age of surgery, level of surgery, and initial neurological deficient did not significantly influence the incidence of complications or neurological and functional outcomes.ConclusionSSA, a range of anomalies appearing early in childhood, progresses gradually. Surgery involves vertebrectomy followed by interbody fusion and screw fixation, guided by neurophysiological monitoring. Surgery is recommended for worsening neurological symptoms, but conservative options like bracing can be considered, due to a high risk of complications.

Publicações recentes

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📚 EuropePMC31 artigos no totalmostrando 29

2025

ZFHX3-associated neural tube defect.

BMJ case reports
2025

Segmental spinal dysgenesis - a rare type of spinal dysraphism.

Pediatric radiology
2025

Atypical Variants of Spinal Dysraphism: A Case Series.

Journal of the West African College of Surgeons
2024

A rare presentation of segmental spinal dysgenesis: Clinical and radiological findings.

Radiology case reports
2025

Optimizing sacral screw fixation in patients with caudal regression syndrome.

Spine deformity
2025

Segmental Spinal Aplasia: Anatomical Variations and Treatment Insights.

Global spine journal
2024

Clinical and radiological evaluation of caudal regression syndrome.

Pediatric radiology
2024

Association of spinal cord abnormalities with vertebral anomalies: an embryological perspective.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
2023

The comorbidities of recurrent inguinal hernia in children: A systematic review.

Pediatrics international : official journal of the Japan Pediatric Society
2023

Severe type of segmental spinal dysgenesis with complete disconnection of the spinal cord and vertebra associated with open neural tube defect.

Surgical neurology international
2023

Segmental spinal dysgenesis: insights from three consecutive cases and a review of the literature.

Spine deformity
2023

Ischemic myelomalacia and closed spinal dysraphism in multiple finishing swine.

Veterinary pathology
2022

Disorders of Secondary Neurulation: Suggestion of a New Classification According to Pathoembryogenesis.

Advances and technical standards in neurosurgery
2021

An Unusual Case of a Conus Hanging by a Thread.

Journal of pediatric neurosciences
2021

Negative pressure wound therapy in cases of spinal surgery and exposed dura: a case-based review.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
2021

Disorders of Secondary Neurulation : Mainly Focused on Pathoembryogenesis.

Journal of Korean Neurosurgical Society
2021

Three-Dimensional-Printed Drill Guides for Occipitothoracic Fusion in a Pediatric Patient With Occipitocervical Instability.

Operative neurosurgery (Hagerstown, Md.)
2020

Segmental Spinal Dysgenesis.

Ochsner journal
2021

Surgical treatment of segmental spinal dysgenesis: a report of 19 cases.

Spine deformity
2020

Segmental spinal dysgenesis with open spinal dysraphism and Chiari II features, case report.

Radiology case reports
2020

Do junctional neural tube defect and segmental spinal dysgenesis have the same pathoembryological background?

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
2019

Segmental spinal dysgenesis: A rare congenital spinal malformation.

The Indian journal of radiology & imaging
2019

Atypical Segmental Spinal Dysgenesis: Prenatal Diagnosis With Postpartum Short-Term Follow-Up.

Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC
2019

Segmental Spinal Dysgenesis-"Redefined".

Asian spine journal
2017

Surgical Treatment of Thoracolumbar Segmental Spinal Dysgenesis: Optimal Type of Fusion.

World neurosurgery
2017

Segmental spinal dysgenesis associated with occult dysraphism: Considerations on management strategies.

Journal of craniovertebral junction & spine
2017

Segmental spinal dysgenesis with caudal agenesis in a Holstein calf.

The Journal of veterinary medical science
2017

Segmental spinal dysgenesis: a report of early surgical intervention and outcome in a 14-month-old child.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
2016

Fetal segmental spinal dysgenesis and unusual segmental agenesis of the anterior spinal artery.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
Ver todos os 31 no EuropePMC

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Respostas geradas por IA a partir das fontes citadas

É uma anomalia rara congênita que compromete o desenvolvimento de segmentos da medula e da coluna espinhal. Ela é considerada uma forma atípica de disrafismo espinhal nos estudos científicos.

Referências

Fontes citadas no texto, publicações do grafo e bases de dados usadas neste verbete

3 fontes citadas no texto · 7 publicações do grafo RarasNet (PubMed) · 2 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. MONDO
    purl.obolibrary.org
  2. Atypical Variants of Spinal Dysraphism: A Case Series.
    Journal of the West African College of Surgeons2025PMID 39735810

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. (2026). Disgenesia espinhal segmentar. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/disgenesia-espinhal-segmentar

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

Disgenesia espinhal segmentar

ORPHA:656126 · MONDO:0958275
🇧🇷 Brasil SUS
SIGTAP
5 procedimentos
Geral
CID-10
Q76.0 · Espinha bífida oculta
MedGen
UMLS
C5891176
EuropePMC
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
Rara