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Síndrome de supercrescimento Kosaki
ORPHA:477831CID-10 · Q87.3CID-11 · LD2COMIM 616592DOENÇA RARA

Síndrome de Sotos é uma alteração genética rara, no gene NSD1, descoberta nos EUA em 1964 pelo Dr. Juan Fernandez Sotos, endocrinologista pediátrico. Caracterizada principalmente pelo crescimento físico excessivo durante os primeiros anos de vida. A síndrome pode ser acompanhada de atraso neuropsicomotor e social, hipotonia, e prejuízos de fala. As crianças com síndrome de Sotos tendem a serem grandes desde o nascimento e são freqüentemente mais altas, mais pesadas, e apresentam perímetro cefálico elevado (macrocefalia) em relação a outras crianças da mesma idade, podem apresentar ainda um andar característico devido a hipotonia, o que pode ser aprimorado através da físioterapia.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Síndrome de supercrescimento Kosaki é uma condição autossômica dominante rara associada a mutações no gene PDGFRB. Manifesta-se com miofibromatose, alucinações auditivas, fissuras palpebrais inclinadas para baixo, depressão, pele frágil e fina, xantelasma e ptose.

Pesquisas ativas
1 ensaio
1 total registrados no ClinicalTrials.gov
Publicações científicas
21 artigos
Último publicado: 2026 Apr 12

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
2
pacientes catalogados
Início
Infancy
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q87.3
🇧🇷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

Preparando trilha educativa...

Sinais e sintomas

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

Partes do corpo afetadas

😀
Face
4 sintomas
🧠
Neurológico
4 sintomas
🦴
Ossos e articulações
3 sintomas
🧬
Pele e cabelo
3 sintomas
👁️
Olhos
2 sintomas
📏
Crescimento
2 sintomas

+ 7 sintomas em outras categorias

Características mais comuns

100%prev.
Testa proeminente
Frequência: 2/2
100%prev.
Ponte nasal ampla
Frequência: 2/2
100%prev.
Proptose
Frequência: 2/2
100%prev.
Escoliose
Frequência: 2/2
100%prev.
Pele hiperextensível
Frequência: 2/2
100%prev.
Supercrescimento
Frequência: 2/2
26sintomas
Muito frequente (10)
Frequente (11)
Sem dados (5)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 26 características clínicas mais associadas, ordenadas por frequência.

Testa proeminenteProminent forehead
Frequência: 2/2100%
Ponte nasal amplaWide nasal bridge
Frequência: 2/2100%
ProptoseProptosis
Frequência: 2/2100%
EscolioseScoliosis
Frequência: 2/2100%
Pele hiperextensívelHyperextensible skin
Frequência: 2/2100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico21PubMed
Últimos 10 anos20publicações
Pico20215 papers
Linha do tempo
2026Hoje · 2026📈 2021Ano de pico🧪 2023Primeiro 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

1 gene identificado com associação a esta condição. Padrão de herança: No data available.

PDGFRBPlatelet-derived growth factor receptor betaDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Tyrosine-protein kinase that acts as a cell-surface receptor for homodimeric PDGFB and PDGFD and for heterodimers formed by PDGFA and PDGFB, and plays an essential role in the regulation of embryonic development, cell proliferation, survival, differentiation, chemotaxis and migration. Plays an essential role in blood vessel development by promoting proliferation, migration and recruitment of pericytes and smooth muscle cells to endothelial cells. Plays a role in the migration of vascular smooth

LOCALIZAÇÃO

Cell membraneCytoplasmic vesicleLysosome lumen

VIAS BIOLÓGICAS (1)
Signaling by PDGF
EXPRESSÃO TECIDUAL(Ubíquo)
Cervix Ectocervix
398.1 TPM
Cervix Endocervix
353.6 TPM
Artéria tibial
346.2 TPM
Tecido adiposo
303.2 TPM
Artéria coronária
277.8 TPM
OUTRAS DOENÇAS (10)
myofibromatosis, infantile, 1acroosteolysis-keloid-like lesions-premature aging syndromebasal ganglia calcification, idiopathic, 4ocular pterygium-digital keloid dysplasia syndrome
HGNC:8804UniProt:P09619

Variantes genéticas (ClinVar)

148 variantes patogênicas registradas no ClinVar.

🧬 PDGFRB: NM_002609.4(PDGFRB):c.1A>G (p.Met1Val) ()
🧬 PDGFRB: NM_002609.4(PDGFRB):c.2312A>G (p.Tyr771Cys) ()
🧬 PDGFRB: NM_002609.4(PDGFRB):c.2546G>C (p.Arg849Pro) ()
🧬 PDGFRB: NM_002609.4(PDGFRB):c.2941G>A (p.Asp981Asn) ()
🧬 PDGFRB: NM_002609.4(PDGFRB):c.2433C>T (p.Ala811=) ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

Carregando...

Tratamento e manejo

Remédios, cuidados de apoio e o que precisa acompanhar

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
·Pré-clínico1
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 1 ensaio
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome de supercrescimento Kosaki

🗺️

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

1 ensaios clínicos encontrados, 1 ativos.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

Timeline de publicações
21 papers (10 anos)
#1

Recurrent platelet-derived growth factor receptor beta gene mutations in Kosaki overgrowth syndrome: a molecular and clinical overview.

Clinical dysmorphology2026 Apr 01

Kosaki overgrowth syndrome (KOGS) is a rare genetic disorder linked to germline variants in the platelet-derived growth factor receptor beta gene ( PDGFRB ) that is characterized by postnatal overgrowth, hyperelastic skin, lipodystrophy, and craniofacial anomalies. This study aimed to summarize clinical and genetic data from reported KOGS cases and investigate the molecular consequences of two recurrent KOGS-associated PDGFRB variants. Clinical and genetic information from 17 previously published KOGS cases was reviewed. Molecular studies were performed using patient-derived fibroblasts and genetically modified cells transduced with the recurrent PDGFRB variants Trp566Arg and Pro584Arg. Downstream signaling and phosphorylation of PDGFRβ tyrosine residues were assessed by immunoblotting and immunocytochemistry. Both variants induced phosphorylation of specific PDGFRβ tyrosine residues and activated downstream signaling pathways in the absence of ligand stimulation, which could contribute to the phenotypic overgrowth observed in KOGS. Immunocytochemistry revealed vesicle-like structures of phosphorylated PDGFRβ (pY740), resembling wild-type cells stimulated with growth factor, thereby supporting the constitutive activation of PDGFRβ in patient fibroblasts. Both variants showed sensitivity to the tyrosine kinase inhibitor imatinib. Recurrent PDGFRB variants in KOGS cause ligand-independent activation of PDGFRβ, contributing to the overgrowth phenotype. Imatinib may represent a potential targeted therapeutic option.

#2

Variable response of germline activating PDGFRB variants to receptor tyrosine kinase inhibitors: implications for treatment.

European journal of human genetics : EJHG2025 Dec

Platelet-derived growth factor receptor-beta (PDGFRβ) is a receptor tyrosine kinase that plays significant roles in cell growth, proliferation, and differentiation. Germline variants of PDGFRB can lead to several different diseases, e.g. infantile myofibromatosis, Kosaki overgrowth syndrome, Penttinen premature aging syndrome, ocular pterygium - digital keloid dysplasia, primary familial brain calcification, and others. Some variants cause the kinase to be constitutively active, even in the absence of ligand, while others lead to inactivation of signaling transduction mechanisms. Constitutive activation of PDGFRβ leads to increased cell growth, proliferation, and differentiation, which can lead to the development of tumors or other abnormal growths. The development of new therapies that target PDGFRβ is an active area of research, primarily in cancer treatment. However, these therapies have the potential to also provide effective treatment options for patients with germline variants of PDGFRB. Here, we provide a summary of recurrent activating germline variants reported in PDGFRB and examine their sensitivity to different tyrosine kinase inhibitors. We show that the respective amino acid substitutions respond differently to treatment with tyrosine kinase inhibitors that correlate with previous in vivo data. Our data may assist healthcare providers when deciding personalized treatment of patients with disorders associated with activating variants in PDGFRB.

#3

Haploinsufficiency of Runx2 restores the cranial sutures in a mouse model of Pdgfrb-related craniosynostosis.

Human molecular genetics2025 Nov 02

Syndromic forms of craniosynostosis occur as a result of dysregulation of various molecular signaling cascades. In humans, a specific gain-of-function mutation (W566R) in PDGFRB causes a distinctive overgrowth syndrome (OMIM # 616592). Affected individuals exhibit distinctive facial features and craniosynostosis. Using CRISPR/Cas9 gene editing, we generated a mouse model carrying the same pathogenic variant of PDGFRB. The Pdgfrb+/W565R mice exhibited craniosynostosis with skull-base malformation: thus, we successfully recapitulated the human disease phenotype. In humans, haploinsufficiency of RUNX2, a critical transcription factor in osteogenesis, results in defects of the skull and clavicles due to insufficient membranous ossification. Such phenotypes have been well reproduced in Runx2+/- mice. To delineate the molecular mechanisms underlying the development of Pdgfrb-related craniosynostosis, we crossed the Pdgfrb+/W565R mice with Runx2+/- mice. It is noteworthy that the double- mutant mice, i.e. Pdgfrb+/W565R  Runx2+/- mice, exhibited near complete restoration of the cranial sutures and skull base. The present observation provides in vivo evidence that overactivation of Pdgfrb signaling leads to craniosynostosis through the effect of Runx2. The phenotypic reversal of the cranial structures suggests that modification of the Pdgfrb-Runx2 signaling cascade might offer a novel therapeutic opportunity for craniosynostosis.

#4

Penttinen syndrome-associated PDGFRB Val665Ala variant causes aberrant constitutive STAT1 signalling.

Journal of cellular and molecular medicine2022 Jul

Penttinen syndrome is a rare progeroid disorder caused by mutations in platelet-derived growth factor (PDGF) receptor beta (encoded by the PDGFRB proto-oncogene) and characterized by a prematurely aged appearance with lipoatrophy, skin lesions, thin hair and acro-osteolysis. Activating mutations in PDGFRB have been associated with other human diseases, including Kosaki overgrowth syndrome, infantile myofibromatosis, fusiform aneurysms, acute lymphoblastic leukaemia and myeloproliferative neoplasms associated with eosinophilia. The goal of the present study was to characterize the PDGFRB p.Val665Ala variant associated with Penttinen syndrome at the molecular level. This substitution is located in a conserved loop of the receptor tyrosine kinase domain. We observed that the mutant receptor was expressed at a lower level but showed constitutive activity. In the absence of ligand, the mutant activated STAT1 and elicited an interferon-like transcriptional response. Phosphorylation of STAT3, STAT5, AKT and phospholipase Cγ was weak or undetectable. It was devoid of oncogenic activity in two cell proliferation assays, contrasting with classical PDGF receptor oncogenic mutants. STAT1 activation was not sensitive to ruxolitinib and did not rely on interferon-JAK2 signalling. Another tyrosine kinase inhibitor, imatinib, blocked signalling by the p.Val665Ala variant at a higher concentration compared with the wild-type receptor. Importantly, this concentration remained in the therapeutic range. Dasatinib, nilotinib and ponatinib also inhibited the mutant receptor. In conclusion, the p.Val665Ala variant confers unique features to PDGF receptor β compared with other characterized gain-of-function mutants, which may in part explain the particular set of symptoms associated with Penttinen syndrome.

#5

Kosaki overgrowth syndrome due to a novel de novo PDGFRB variant.

Clinical genetics2022 Jan

Publicações recentes

Ver todas no PubMed

📚 EuropePMC11 artigos no totalmostrando 20

2026

Recurrent platelet-derived growth factor receptor beta gene mutations in Kosaki overgrowth syndrome: a molecular and clinical overview.

Clinical dysmorphology
2025

Variable response of germline activating PDGFRB variants to receptor tyrosine kinase inhibitors: implications for treatment.

European journal of human genetics : EJHG
2025

Haploinsufficiency of Runx2 restores the cranial sutures in a mouse model of Pdgfrb-related craniosynostosis.

Human molecular genetics
2022

Penttinen syndrome-associated PDGFRB Val665Ala variant causes aberrant constitutive STAT1 signalling.

Journal of cellular and molecular medicine
2022

Kosaki Overgrowth Syndrome: Report of a Family with a Novel PDGFRB Variant.

Molecular syndromology
2021

Skeletal stem cell fate defects caused by Pdgfrb activating mutation.

Development (Cambridge, England)
2022

Kosaki overgrowth syndrome due to a novel de novo PDGFRB variant.

Clinical genetics
2021

Positive response to imatinib in PDGFRB-related Kosaki overgrowth syndrome.

American journal of medical genetics. Part A
2021

Segmental overgrowth and aneurysms due to mosaic PDGFRB p.(Tyr562Cys).

American journal of medical genetics. Part A
2021

PDGF receptor mutations in human diseases.

Cellular and molecular life sciences : CMLS
2021

Progressive cerebral and coronary aneurysms in the original two patients with Kosaki overgrowth syndrome.

American journal of medical genetics. Part A
2020

Carpal tunnel syndrome in paediatric patients: A novel association with Kosaki overgrowth syndrome.

JPRAS open
2020

Activating variants in PDGFRB result in a spectrum of disorders responsive to imatinib monotherapy.

American journal of medical genetics. Part A
2020

Kosaki overgrowth syndrome: A novel pathogenic variant in PDGFRB and expansion of the phenotype including cerebrovascular complications.

Clinical genetics
2019

Kosaki overgrowth syndrome: A newly identified entity caused by pathogenic variants in platelet-derived growth factor receptor-beta.

American journal of medical genetics. Part C, Seminars in medical genetics
2019

A novel de novo PDGFRB variant in a child with severe cerebral malformations, intracerebral calcifications, and infantile myofibromatosis.

American journal of medical genetics. Part A
2019

Constitutive activation of the PI3K-AKT pathway and cardiovascular abnormalities in an individual with Kosaki overgrowth syndrome.

American journal of medical genetics. Part A
2018

Phenotype expansion and development in Kosaki overgrowth syndrome.

Clinical genetics
2017

STAT1 modulates tissue wasting or overgrowth downstream from PDGFRβ.

Genes &amp; development
2017

Expansion of the phenotype of Kosaki overgrowth syndrome.

American journal of medical genetics. Part A

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 supercrescimento Kosaki

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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. Recurrent platelet-derived growth factor receptor beta gene mutations in Kosaki overgrowth syndrome: a molecular and clinical overview.
    Clinical dysmorphology· 2026· PMID 41223009mais citado
  2. Variable response of germline activating PDGFRB variants to receptor tyrosine kinase inhibitors: implications for treatment.
    European journal of human genetics : EJHG· 2025· PMID 41094177mais citado
  3. Haploinsufficiency of Runx2 restores the cranial sutures in a mouse model of Pdgfrb-related craniosynostosis.
    Human molecular genetics· 2025· PMID 40997857mais citado
  4. Penttinen syndrome-associated PDGFRB Val665Ala variant causes aberrant constitutive STAT1 signalling.
    Journal of cellular and molecular medicine· 2022· PMID 35689379mais citado
  5. Kosaki overgrowth syndrome due to a novel de novo PDGFRB variant.
    Clinical genetics· 2022· PMID 34708400mais citado
  6. Connective tissue growth in a mouse model of Kosaki overgrowth syndrome is limited by STAT1.
    bioRxiv· 2026· PMID 41993315recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:477831(Orphanet)
  2. OMIM OMIM:616592(OMIM)
  3. MONDO:0014704(MONDO)
  4. GARD:17860(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q48989325(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 supercrescimento Kosaki
Compêndio · Raras BR

Síndrome de supercrescimento Kosaki

ORPHA:477831 · MONDO:0014704
Prevalência
<1 / 1 000 000
Casos
2 casos conhecidos
Herança
No data available
CID-10
Q87.3 · Síndromes com malformações congênitas com hipercrescimento precoce
CID-11
Ensaios
1 ativos
Início
Infancy
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C4225270
EuropePMC
Wikidata
Papers 10a
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