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Displasia SPONASTRIME
ORPHA:93357CID-10 · Q77.7CID-11 · LD24.3OMIM 271510DOENÇA RARA

Doença genética rara caracterizada por insuficiência da medula óssea, anomalias da coluna vertebral, nariz em sela e estrias metafísicas.

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Introdução

O que você precisa saber de cara

📋

Doença genética rara caracterizada por insuficiência da medula óssea, anomalias da coluna vertebral, nariz em sela e estrias metafísicas.

Publicações científicas
22 artigos
Último publicado: 2025 Sep 19

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
16
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q77.7
🇧🇷Dados SUS / DATASUS
PROCEDIMENTOS SIGTAP (5)
0202010503
Cariótipo — bandas G, Q ou Rgenetic_test
0202010600
Pesquisa de microdeleções/microduplicações por FISHlab_test
0202010694
Sequenciamento completo do exoma (WES)rehabilitation
0202010260
Dosagem de alfa-fetoproteína
0301070040
Atendimento em reabilitação — doenças raras
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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

🦴
Ossos e articulações
30 sintomas
😀
Face
13 sintomas
🧠
Neurológico
5 sintomas
📏
Crescimento
4 sintomas
👁️
Olhos
3 sintomas
🦷
Dentes
3 sintomas

+ 34 sintomas em outras categorias

Características mais comuns

90%prev.
Retrusão médio-facial
Muito frequente (99-80%)
90%prev.
Anormalidade da coluna vertebral
Muito frequente (99-80%)
90%prev.
Ponte nasal deprimida
Muito frequente (99-80%)
90%prev.
Formato facial anormal
Muito frequente (99-80%)
89%prev.
Platispondilia
Muito frequente (99-80%)
89%prev.
Baixa estatura desproporcional de membros curtos
Muito frequente (99-80%)
97sintomas
Muito frequente (7)
Frequente (11)
Ocasional (61)
Muito raro (3)
Sem dados (15)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 97 características clínicas mais associadas, ordenadas por frequência.

Retrusão médio-facialMidface retrusion
Muito frequente (99-80%)90%
Anormalidade da coluna vertebralAbnormality of the vertebral column
Muito frequente (99-80%)90%
Ponte nasal deprimidaDepressed nasal bridge
Muito frequente (99-80%)90%
Formato facial anormalAbnormal facial shape
Muito frequente (99-80%)90%
PlatispondiliaPlatyspondyly
Muito frequente (99-80%)89%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico22PubMed
Últimos 10 anos7publicações
Pico20192 papers
Linha do tempo
2025Hoje · 2026
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

1 gene identificado com associação a esta condição. Padrão de herança: Autosomal recessive.

TONSLTonsoku-like proteinDisease-causing germline mutation(s) (loss of function) inTolerante
FUNÇÃO

Component of the MMS22L-TONSL complex, a complex that promotes homologous recombination-mediated repair of double-strand breaks (DSBs) at stalled or collapsed replication forks (PubMed:21055983, PubMed:21055984, PubMed:21055985, PubMed:21113133, PubMed:26527279, PubMed:27338793, PubMed:27797818, PubMed:29478807, PubMed:30773278). The MMS22L-TONSL complex is required to maintain genome integrity during DNA replication (PubMed:21055983, PubMed:21055984, PubMed:21055985). It mediates the assembly o

LOCALIZAÇÃO

NucleusChromosomeCytoplasm

MECANISMO DE DOENÇA

Spondyloepimetaphyseal dysplasia, sponastrime type

An autosomal recessive bone disease characterized by spine abnormalities, mid-face hypoplasia with a depressed nasal bridge, and striation of the metaphyses. Additional features include disproportionate short stature with exaggerated lumbar lordosis, scoliosis, coxa vara, limited elbow extension, small dysplastic epiphyses, childhood cataracts, short dental roots, and hypogammaglobulinemia. Disease severity and clinical manifestations are variable. Some patients have intellectual disability.

EXPRESSÃO TECIDUAL(Ubíquo)
Linfócitos
23.7 TPM
Testículo
12.9 TPM
Cerebelo
10.2 TPM
Tireoide
9.8 TPM
Intestino delgado
9.4 TPM
OUTRAS DOENÇAS (1)
spondyloepimetaphyseal dysplasia, sponastrime type
HGNC:7801UniProt:Q96HA7

Variantes genéticas (ClinVar)

167 variantes patogênicas registradas no ClinVar.

🧬 TONSL: NM_013432.5(TONSL):c.3041del (p.Pro1014fs) ()
🧬 TONSL: NM_013432.5(TONSL):c.3421dup (p.Leu1141fs) ()
🧬 TONSL: NM_013432.5(TONSL):c.2106del (p.Ser703fs) ()
🧬 TONSL: NM_013432.5(TONSL):c.490del (p.Leu164fs) ()
🧬 TONSL: NM_013432.5(TONSL):c.2870_2871del (p.Val957fs) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 60 variantes classificadas pelo ClinVar.

30
30
Patogênica (50.0%)
VUS (50.0%)
VARIANTES MAIS SIGNIFICATIVAS
TONSL: NM_013432.5(TONSL):c.546del (p.Asn182fs) [Likely pathogenic]
TONSL: NM_013432.5(TONSL):c.674dup (p.Leu225fs) [Pathogenic/Likely pathogenic]
TONSL: NM_013432.5(TONSL):c.3006_3006+1del [Likely pathogenic]
TONSL: NM_013432.5(TONSL):c.3166C>T (p.Gln1056Ter) [Likely pathogenic]
TONSL: NM_013432.5(TONSL):c.2952_2953delinsT (p.Ala985fs) [Likely pathogenic]

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 — Displasia SPONASTRIME

🗺️

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

Timeline de publicações
7 papers (10 anos)
#1

A case report of SPONASTRIME dysplasia with novel TONSL mutation: genetic analysis, clinical manifestations, and the effect of growth hormone treatment.

Human molecular genetics2025 Sep 19

SPONASTRIME dysplasia is a rare genetic disorder characterized by short stature, facial abnormalities, vertebral issues, and bone striations, caused by recessive mutations in the TONSL gene. We reported a 6-year-old boy with characteristic clinical features of SPONASTRIME dysplasia, accompanied by neutropenia. Genetic analysis revealed biallelic variants in TONSL: mother-inherited c.1289del (p.Gln430ArgfsTer13) and father-inherited c.1961G > C (p.Arg654Pro), both of which were previously unreported. We predicted the c.1289del (p.Gln430ArgfsTer13) variant as likely pathogenic in silico analysis, while the c.1961G > C (p.Arg654Pro) variant as uncertain pathogenicity in silico analysis, and the pathogenicity was confirmed by functional studies in transfected HEK 293 T cells. Six-month growth hormone therapy was administered to the patient after confirmed diagnosis, with limited improvement. These findings have important implications for the diagnosis and treatment of the disease.

#2

Dental and craniofacial manifestations in sponastrime dysplasia - An observational study.

Bone2025 Jun

Sponastrime dysplasia is an extremely rare autosomal recessive spondyloepimetaphyseal dysplasia characterized by short stature, midface hypoplasia, nasal alterations, and dental anomalies. This is, to date, the first comprehensive report on oral and craniofacial findings, and on subjective oral health-related quality of life as clinically and radiologically examined in two adults with sponastrime dysplasia. Both subjects had typical features of sponastrime dysplasia with disproportionate short stature, hypertelorism and midface hypoplasia, and variants in the TONSL gene. One had a severe phenotype (adult height 91 cm), whereas the other exhibited moderate severity (adult height 135 cm). The notable variation in the disorder severity was also expressed in dental manifestations. Dentin dysplasia type I-like abnormalities were seen in tooth eruption and morphology. Dental roots were shortened in both individuals. The individual with severe growth failure had lost several permanent teeth and reported a moderate level of discomfort and impairment due to oral health issues, as evaluated with the Oral Health Impact Profile questionnaire. In contrast, the other individual had a full permanent dentition and minimal negative impact on oral health-related quality of life. Both had short jaw lengths and face height. The anteroposterior jaw relationships were normal. The jaws of the individual with a severe phenotype were retrognathic in relation to the skull base. Both had prominent forehead. Due to significant craniofacial and dental involvement, individuals with sponastrime dysplasia should be regularly followed by a multidisciplinary medical team including a dentist, to maintain individuals' oral health and oral health-related quality of life.

#3

[Analysis of a child with SPONASTRIME dysplasia due to compound heterozygous variants of TONSL gene].

Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics2024 May 10

To explore the clinical features and genetic etiology of a child with SPONASTRIME dysplasia (SD). A 9-month-old female who had presented at the Linyi People's Hospital in August 2022 for short stature was selected as the study subject. Clinical data of the child were collected, and whole exome sequencing (WES) was carried out. Sanger sequencing was used for validating the candidate variants. The child has manifested short stature, mid-face hypoplasia, joint laxity, internal knee rotation, irregularities in the metaphysis of long bones, and flat and concave lumbar vertebrae. WES revealed that she has harbored compound heterozygous variants of the TONSL gene, namely c.3088G>T (p.Glu1030*) and c.3053G>A (p.Arg1018His), which were inherited from her phenotypically normal parents. Neither variant was reported previously. Based on the guidelines from the American College of Medical Genetics and Genomics (ACMG), the c.3088G>T variant was classified as likely pathogenic (PVS1+PM2_Supporting), whilst the c.3053G>A was classified as a variant of uncertain significance (PM2_Supporting+PM3+PP3). The c.3088G>T and c.3053G>A compound heterozygous variants of the TONSL gene probably underlay the pathogenesis in this patient. Above finding has facilitated the clinical diagnosis and genetic counseling for her family.

#4

Novel TONSL variants cause SPONASTRIME dysplasia and associate with spontaneous chromosome breaks, defective cell proliferation and apoptosis.

Human molecular genetics2020 Nov 04

SPONASTRIME dysplasia is an ultrarare spondyloepimetaphyseal dysplasia featuring short stature and short limbs, platyspondyly, depressed nasal bridge with midface hypoplasia and striated metaphyses. In 2019, an autosomal recessive inheritance was demonstrated by the identification of bi-allelic hypomorphic alleles in TONSL. The encoded protein has a critical role in maintaining genome integrity by promoting the homologous recombination required for repairing spontaneous replication-associated DNA lesions at collapsed replication forks. We report a 9-year-old girl with typical SPONASTRIME dysplasia and resulted in carrier of the novel missense p.(Gln430Arg) and p.(Leu1090Arg) variants in TONSL at whole-exome sequencing. In silico analysis predicted that these variants induced thermodynamic changes with a pathogenic impact on protein function. To support the pathogenicity of the identified variants, cytogenetic analysis and microscopy assays showed that patient-derived fibroblasts exhibited spontaneous chromosomal breaks and flow cytometry demonstrated defects in cell proliferation and enhanced apoptosis. These findings contribute to our understanding of the molecular pathogenesis of SPONASTRIME dysplasia and might open the way to novel therapeutic approaches.

#5

Hypomorphic Mutations in TONSL Cause SPONASTRIME Dysplasia.

American journal of human genetics2019 Mar 07

SPONASTRIME dysplasia is a rare, recessive skeletal dysplasia characterized by short stature, facial dysmorphism, and aberrant radiographic findings of the spine and long bone metaphysis. No causative genetic alterations for SPONASTRIME dysplasia have yet been determined. Using whole-exome sequencing (WES), we identified bi-allelic TONSL mutations in 10 of 13 individuals with SPONASTRIME dysplasia. TONSL is a multi-domain scaffold protein that interacts with DNA replication and repair factors and which plays critical roles in resistance to replication stress and the maintenance of genome integrity. We show here that cellular defects in dermal fibroblasts from affected individuals are complemented by the expression of wild-type TONSL. In addition, in vitro cell-based assays and in silico analyses of TONSL structure support the pathogenicity of those TONSL variants. Intriguingly, a knock-in (KI) Tonsl mouse model leads to embryonic lethality, implying the physiological importance of TONSL. Overall, these findings indicate that genetic variants resulting in reduced function of TONSL cause SPONASTRIME dysplasia and highlight the importance of TONSL in embryonic development and postnatal growth.

Publicações recentes

Ver todas no PubMed

Associações

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Comunidades

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Doenças 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.

  1. A case report of SPONASTRIME dysplasia with novel TONSL mutation: genetic analysis, clinical manifestations, and the effect of growth hormone treatment.
    Human molecular genetics· 2025· PMID 40794898mais citado
  2. Dental and craniofacial manifestations in sponastrime dysplasia - An observational study.
    Bone· 2025· PMID 40122363mais citado
  3. [Analysis of a child with SPONASTRIME dysplasia due to compound heterozygous variants of TONSL gene].
    Zhonghua yi xue yi chuan xue za zhi = Zhonghua yixue yichuanxue zazhi = Chinese journal of medical genetics· 2024· PMID 38684304mais citado
  4. Novel TONSL variants cause SPONASTRIME dysplasia and associate with spontaneous chromosome breaks, defective cell proliferation and apoptosis.
    Human molecular genetics· 2020· PMID 32959051mais citado
  5. Hypomorphic Mutations in TONSL Cause SPONASTRIME Dysplasia.
    American journal of human genetics· 2019· PMID 30773278mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:93357(Orphanet)
  2. OMIM OMIM:271510(OMIM)
  3. MONDO:0010068(MONDO)
  4. GARD:4970(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q18556941(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

Displasia SPONASTRIME
Compêndio · Raras BR

Displasia SPONASTRIME

ORPHA:93357 · MONDO:0010068
Prevalência
<1 / 1 000 000
Casos
16 casos conhecidos
Herança
Autosomal recessive
CID-10
Q77.7 · Displasia espondiloepifisária
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0920349
EuropePMC
Wikidata
Papers 10a
DiscussaoAtiva

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