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Doença Pyle
ORPHA:3005CID-10 · Q78.5CID-11 · LD24.1YOMIM 265900DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Sistema ósseoInício neonatalHerança AR
Também conhecida comoSFRP4
Sinônimos clínicos: Displasia metafisária, tipo Pyle · Doença Pyle SFRP4-relacionada

Displasia óssea caracterizada por geno valgo, anomalias metafisárias com alargamento dos ossos longos estendendo-se até as diáfises e dando aos fêmures e tíbias uma aparência de “frasco de Erlenmeyer”, alargamento das costelas e clavículas, platispondilia e adelgaçamento cortical.

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Introdução

O que você precisa saber de cara

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EM LINGUAGEM SIMPLES

A doença de Pyle é um distúrbio dos ossos. Sua característica marcante é uma anormalidade dos ossos longos dos braços e das pernas, em que as extremidades (metáfises) dos ossos são anormalmente largas; a forma dos ossos assemelha‑se a um remo ou pá de barco. As metáfises largas são devido ao aumento da camada interna esponjosa do osso (osso trabecular). Embora o osso trabecular esteja expandido, a camada externa mais densa do osso (osso cortical) é mais fina que o normal. Como resultado, os ossos são frágeis e fraturam-se facilmente. As anomalias ósseas nas pernas costumam causar joelhos em valgo (genu valgum) em pessoas com a condição.

Outras anomalias ósseas também podem ocorrer na doença de Pyle. Pessoas com a condição podem ter clavículas, costelas ou ossos dos dedos das mãos alargados. Problemas dentários são comuns na doença de Pyle, incluindo atraso na erupção dos dentes permanentes e desalinhamento dos dentes superiores e inferiores (maloclusão).

Fonte: MedlinePlus Genetics (NLM/NIH), traduzido
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Informacoes curadas por IA — podem conter imprecisoes

Displasia óssea caracterizada por geno valgo, anomalias metafisárias com alargamento dos ossos longos estendendo-se até as diáfises e dando aos fêmures e tíbias uma aparência de “frasco de Erlenmeyer”, alargamento das costelas e clavículas, platispondilia e adelgaçamento cortical.

Publicações científicas
26 artigos
Último publicado: 2026 Feb 11

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
30
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
5 procedimentos SIGTAPCID-10: Q78.5
🇧🇷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

Partes do corpo afetadas

🦴
Ossos e articulações
10 sintomas
🦷
Dentes
4 sintomas
😀
Face
2 sintomas
📏
Crescimento
2 sintomas
💪
Músculos
1 sintomas
👂
Ouvidos
1 sintomas

+ 16 sintomas em outras categorias

Características mais comuns

100%prev.
Alargamento metafisário
Frequência: 4/4
100%prev.
Densidade mineral óssea reduzida
Frequência: 2/2
100%prev.
Córtex ósseo fino
Frequência: 4/4
90%prev.
Deformidade em frasco de Erlenmeyer dos fêmures
Muito frequente (99-80%)
75%prev.
Genu valgum
Muito frequente (99-80%)
55%prev.
Metáfises aumentadas
Frequente (79-30%)
38sintomas
Muito frequente (4)
Frequente (11)
Ocasional (13)
Sem dados (10)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 38 características clínicas mais associadas, ordenadas por frequência.

Alargamento metafisárioMetaphyseal widening
Frequência: 4/4100%
Densidade mineral óssea reduzidaReduced bone mineral density
Frequência: 2/2100%
Córtex ósseo finoThin bony cortex
Frequência: 4/4100%
Deformidade em frasco de Erlenmeyer dos fêmuresErlenmeyer flask deformity of the femurs
Muito frequente (99-80%)90%
Muito frequente (99-80%)75%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico26PubMed
Últimos 10 anos48publicações
Pico20167 papers
Linha do tempo
2026Hoje · 2026📈 2016Ano de pico🧪 2021Primeiro 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: Autosomal recessive.

Curadoria gene-doença

fontes oficiais
SFRP4
SFRP4Secreted frizzled-related protein 4Disease-causing germline mutation(s) (loss of function) inTolerante
MECANISMO DE DOENÇA

Pyle disease

A disorder characterized by cortical-bone thinning, limb deformity, bone fragility and fractures.

EXPRESSÃO TECIDUAL(Ubíquo)
Cervix Endocervix
562.5 TPM
Cervix Ectocervix
272.2 TPM
Nervo tibial
198.4 TPM
Vagina
93.8 TPM
Ovário
92.3 TPM
OUTRAS DOENÇAS (1)
Pyle disease
HGNC:10778UniProt:Q6FHJ7

Variantes genéticas (ClinVar)

36 variantes patogênicas registradas no ClinVar.

🧬 SFRP4: NM_003014.4(SFRP4):c.50_65del (p.Leu17fs) ()
🧬 SFRP4: GRCh37/hg19 7p14.3-12.3(chr7:29296048-47809018)x1 ()
🧬 SFRP4: GRCh37/hg19 7p14.2-12.3(chr7:37166777-45983129)x3 ()
🧬 SFRP4: NM_003014.4(SFRP4):c.433del (p.Asp145fs) ()
🧬 SFRP4: NM_003014.4(SFRP4):c.445+1G>A ()
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 — Doença Pyle

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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

Onde estão os ensaios

Com ensaio aberto em 1 país. O ponto verde marca onde há vaga agora.

Pesquisa e ensaios clínicos

1 ensaios clínicos encontrados.

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

Timeline de publicações
18 papers (10 anos)
#1

Sfrp4 Is Required for Proper Dental Formation and Stem Cell Regulation.

Journal of dental research2026 Feb 11

Our studies have established that loss-of-function mutations in the Wnt signaling antagonist SFRP4 (Secreted Frizzled Related Protein 4) cause Pyle disease, a rare skeletal disease characterized by limb deformity. Pyle disease can also present with a number of dental conditions, including tooth decay and taurodontism. Aside from the sparse clinical descriptions of the tooth anomalies seen in Pyle disease, the role of Sfrp4 in teeth has not been investigated. Here we show that in adult mouse incisors, Sfrp4 is expressed in the mesenchymal and epithelial compartments and their derivatives as well in the developing apex of the molar roots, pulp, odontoblasts, and periodontal ligament. We report that Sfrp4 deletion in mice leads to markedly shorter incisors, with reduced dentin mineral apposition and enamel volume. In addition, we find that Sfrp4 deletion leads to a reduction in the root length and bifurcation height of the developing molars, both features of taurodontism. Rodent incisors grow continuously during the animal's lifetime, thanks to the maintenance and interactions of epithelial (EpSCs) and mesenchymal stem cells (MSCs) at their apex. As such, the mouse incisor is a powerful tool for studying adult stem cells, their interactions, and their regulation. Using this model, we found that Sfrp4 deletion leads to a significant decrease in Gli1+ MSCs and in Ki67 levels in mesenchymal transient amplifying cells and preameloblasts. Sfrp4-null incisors have reduced type I collagen levels and altered amelogenin and Mmp20 secretion accompanied by changes in the enamel maturation stages. When incisor growth is accelerated by preventing occlusion through tooth clipping, Sfrp4-null incisors grow significantly slower than wt incisors do. Our study suggests a key role for Sfrp4 in the fast-growing teeth (incisors) and developing molars, where there is a need to balance the maintenance and differentiation of the stem cell niche.

#2

Paradoxical combination of osteosclerosis and osteopenia in an adult woman with biallelic TNFRSF11A loss-of-function variants escaping nonsense-mediated decay.

JBMR plus2025 Mar

Osteoclasts are essential for bone resorption, playing a crucial role in skeletal development, homeostasis, and remodeling. Their differentiation depends on the RANK receptor encoded by the TNFRSF11A gene, with defects in this gene linked to osteoclast-poor sclerosing skeletal dysplasias. This report presents a 37-yr-old woman with normal height, valgus deformities that were treated surgically, frequent fractures, scoliosis, mildly elevated BMD, sclerotic diaphyseal bone, and metaphyseal widening. Initially suspected of having dysosteosclerosis, her diagnosis shifted toward Pyle disease due to the valgus deformity and prominent metaphyseal widening and translucency. Genetic analysis identified 2 pathogenic TNFRSF11A variants: a nonsense mutation c.1093G>T, p.(Glu365*) and a frameshift mutation c.1266_1268delinsCC, p.(Leu422Phefs*104). Thus, genetic and clinical assessment converged on the diagnosis of a mild form of dysosteosclerosis. Both mutations introduced premature stop codons but escaped complete nonsense-mediated decay, potentially permitting residual protein function. Analysis of patient-derived osteoclasts cultured on glass surfaces showed partial differentiation. However, in vitro resorptive function was strongly impaired, which was clinically reflected by reduced serum concentration of the bone resorption marker CTx. Despite this impairment, the retained residual resorptive function likely explains the patient's relatively mild clinical presentation. These findings underscore the complex genetic interactions that affect osteoclast function, leading to a spectrum of phenotypes in osteoclast-related bone disorders.

#3

RUNX2-related metaphyseal dysplasia with maxillary hypoplasia: A rare skeletal disorder resembling SFRP4-related Pyle disease.

Clinical genetics2024 Apr

Metaphyseal dysplasia with maxillary hypoplasia with or without brachydactyly (MDMHB) is an ultra-rare skeletal dysplasia caused by heterozygous intragenic RUNX2 duplications, comprising either exons 3 to 5 or exons 3 to 6 of RUNX2. In this study, we describe a 14-year-old Belgian boy with metaphyseal dysplasia with maxillary hypoplasia but without brachydactyly. Clinical and radiographic examination revealed mild facial dysmorphism, dental anomalies, enlarged clavicles, genua valga and metaphyseal flaring and thin cortices with an osteoporotic skeletal appearance. Exome sequencing led to the identification of a de novo heterozygous tandem duplication within RUNX2, encompassing exons 3 to 7. This duplication is larger than the ones previously reported in MDMHB cases since it extends into the C-terminal activation domain of RUNX2. We review previously reported cases with MDMHB and highlight the resemblance of this disorder with Pyle disease, which may be explained by intersecting molecular pathways between RUNX2 and sFRP4. This study expands our knowledge on the genotypic and phenotypic characteristics of MDMHB and the role of RUNX2 in rare bone disorders.

#4

Bone fracture after minor trauma in Pyle's disease: A rare case in an adult.

Radiologia2024

Pyle's disease (PD) is a rare autosomal recessive metaphyseal dysplasia with approximately 30 reported cases and has recently gained interest due to its association with specific genes. While most cases are diagnosed in childhood and are asymptomatic, we present the case of a 39-year-old woman who presented to the Emergency Department with left knee pain, patellar fracture, and "Erlenmeyer flask" deformity. Retrospective review of imaging studies and medical history revealed the symmetric and systemic nature of the skeletal disorder, confirming the diagnosis of PD. Familiarity with this disease is crucial for optimal patient management, and the radiologist plays a crucial role in its diagnosis.

#5

Genome Mining Uncovers a Flavoenzyme-Catalyzed Isomerization Process during the Maturation of Pyrenophorol Dilactones.

Organic letters2024 Mar 01

The biosynthetic gene cluster responsible for the production of C2-asymmetric 16-membered dilactones, including pyrenophorol and its derivatives, was discovered through genome mining of polyketides from a sponge-derived fungus. The biosynthetic pathway of the pyrenophorol dilactones was subsequently elucidated. A distinctive flavoenzyme PylE was identified to catalyze the isomerization of the 4-alcohol-2,3-unsaturated moiety within the dilactone scaffold, resulting in the formation of a 1,4-diketone. Further insights into the catalytic mechanism of PylE were obtained through mutagenesis experiments combined with molecular docking.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC11 artigos no totalmostrando 48

2026

Sfrp4 Is Required for Proper Dental Formation and Stem Cell Regulation.

Journal of dental research
2025

Paradoxical combination of osteosclerosis and osteopenia in an adult woman with biallelic TNFRSF11A loss-of-function variants escaping nonsense-mediated decay.

JBMR plus
2024

Bone fracture after minor trauma in Pyle's disease: A rare case in an adult.

Radiologia
2024

Genome Mining Uncovers a Flavoenzyme-Catalyzed Isomerization Process during the Maturation of Pyrenophorol Dilactones.

Organic letters
2024

RUNX2-related metaphyseal dysplasia with maxillary hypoplasia: A rare skeletal disorder resembling SFRP4-related Pyle disease.

Clinical genetics
2023

Case Report: Osteosclerotic metaphyseal dysplasia with optic nerve involvement and progressive osteonecrosis of the jaw due to a novel LRRK1 mutation.

Frontiers in endocrinology
2023

Brain abnormalities, neurodegeneration, and dysosteosclerosis (BANDDOS): new cases, systematic literature review, and associations with CSF1R-ALSP.

Orphanet journal of rare diseases
2023

Osteopetrosis: Gene-based nosology and significance Dysosteosclerosis.

Bone
2023

Natural history and genetic spectrum of the Turkish metaphyseal dysplasia cohort, including rare types caused by biallelic COL10A1, COL2A1, and LBR variants.

Bone
2023

Biallelic variants in the SLC13A1 sulfate transporter gene cause hyposulfatemia with a mild spondylo-epi-metaphyseal dysplasia.

Clinical genetics
2022

Biallelic loss-of-function variants in EXOC6B are associated with impaired primary ciliogenesis and cause spondylo-epi-metaphyseal dysplasia with joint laxity type 3.

Human mutation
2022

Craniofacial, dental, and molecular features of Pyle disease in a South African child.

BDJ open
2022

A novel variant in GNPNAT1 gene causing a spondylo-epi-metaphyseal dysplasia resembling PGM3-Desbuquois like dysplasia.

American journal of medical genetics. Part A
2022

Dysosteosclerosis: Clinical and Radiological Evolution Reflecting Genetic Heterogeneity.

JBMR plus
2022

Sirolimus Restores Erythropoiesis and Controls Immune Dysregulation in a Child With Cartilage-Hair Hypoplasia: A Case Report.

Frontiers in immunology
2022

Osteosclerotic metaphyseal dysplasia, dysosteosclerosis or osteomyelitis? Paediatric case presentation with associated mandibular swelling and a review of the literature.

BMJ case reports
2022

Sfrp4 and the Biology of Cortical Bone.

Current osteoporosis reports
2021

Taurodontism in dental genetics.

BDJ open
2021

Further phenotypic features and two novel POC1A variants in a patient with SOFT syndrome: A case report.

Molecular medicine reports
2021

Further expanding the mutational spectrum of brain abnormalities, neurodegeneration, and dysosteosclerosis: A rare disorder with neurologic regression and skeletal features.

American journal of medical genetics. Part A
2020

The First Report of Biallelic Missense Mutations in the SFRP4 Gene Causing Pyle Disease in Two Siblings.

Frontiers in genetics
2020

Growth in individuals with Saul-Wilson syndrome.

American journal of medical genetics. Part A
2020

Anesthetic management for cesarean delivery for a parturient with metaphyseal dysplasia and hypophosphatemic rickets.

International journal of obstetric anesthesia
2020

The novel R211Q POP1 homozygous mutation causes different pathogenesis and skeletal changes from those of previously reported POP1-associated anauxetic dysplasia.

American journal of medical genetics. Part A
2020

Adult Osteosclerotic Metaphyseal Dysplasia With Progressive Osteonecrosis of the Jaws and Abnormal Bone Resorption Pattern Due to a LRRK1 Splice Site Mutation.

Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research
2020

A novel homozygous LRRK1 stop gain mutation in a patient suspected with osteosclerotic metaphyseal dysplasia.

Annals of human genetics
2019

An emerging ribosomopathy affecting the skeleton due to biallelic variations in NEPRO.

American journal of medical genetics. Part A
2019

Sfrp4 repression of the Ror2/Jnk cascade in osteoclasts protects cortical bone from excessive endosteal resorption.

Proceedings of the National Academy of Sciences of the United States of America
2019

Bi-allelic CSF1R Mutations Cause Skeletal Dysplasia of Dysosteosclerosis-Pyle Disease Spectrum and Degenerative Encephalopathy with Brain Malformation.

American journal of human genetics
2018

Metaphyeal and Diaphyseal Dysplasia of the Third Cervical Vertebra Secondary to Physeal Necrosis in a Quarter Horse Foal.

Journal of comparative pathology
2018

Schmid's Type of Metaphyseal Chondrodysplasia: Diagnosis and Management.

Orthopaedic surgery
2018

Further evidence for the involvement of EFL1 in a Shwachman-Diamond-like syndrome and expansion of the phenotypic features.

Cold Spring Harbor molecular case studies
2018

Resolution of femoral metaphyseal dysplasia in CINCA syndrome after long-term treatment with interleukin-1 blockade.

Clinical rheumatology
2020

Pyle's Disease: A human model of differentiated cortical and trabecular homeostasis.

Reumatologia clinica
2017

A novel sequence variant in SFRP4 causing Pyle disease.

Journal of human genetics
2017

A novel homozygous truncating mutation of the SFRP4 gene in Pyle's disease.

Clinical genetics
2016

Pyle disease (metaphyseal dysplasia) presenting in two adult sisters.

Radiology case reports
2017

Identification of a novel LRRK1 mutation in a family with osteosclerotic metaphyseal dysplasia.

Journal of human genetics
2016

New Study by HSDM Researchers May Have Implications for Treating Osteoporosis.

Harvard dental bulletin
2017

Metaphyseal dysplasia, Spahr type; missense MMP13 mutations in two Iraqi siblings.

Clinical dysmorphology
2016

[Developmental characteristics of various types of hand bones of Poland's syndrome].

Zhonghua wai ke za zhi [Chinese journal of surgery]
2016

Cortical-Bone Fragility--Insights from sFRP4 Deficiency in Pyle's Disease.

The New England journal of medicine
2016

Pyle metaphyseal dysplasia in an African child: Case report and review of the literature.

South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde
2016

Identification of biallelic LRRK1 mutations in osteosclerotic metaphyseal dysplasia and evidence for locus heterogeneity.

Journal of medical genetics
2016

Metaphyseal dysplasia associated with chronic facial nerve palsy.

Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery
2015

[Clinical and genetic features of Schwartz-Jampel syndrome in a Chinese child: case report and literature review].

Zhonghua er ke za zhi = Chinese journal of pediatrics
2015

Osteosclerotic metaphyseal dysplasia with extensive interstitial pulmonary lesions: a case report and literature review.

Skeletal radiology
2015

Intracranial Hypertension in Children: Etiologies, Clinical Features, and Outcome.

Journal of child neurology

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 Doença Pyle 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 uma displasia óssea rara de herança autossômica recessiva ligada ao gene SFRP4. A condição produz alargamento das extremidades dos ossos longos, lembrando a forma de um frasco de Erlenmeyer, além de fragilidade esquelética.

Referências

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

Citar este verbete

Raras. (s.d.). Doença Pyle. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/doenca-pyle

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

Doença Pyle

ORPHA:3005 · MONDO:0009943
🇧🇷 Brasil SUS
SIGTAP
5 procedimentos
Geral
Prevalência
<1 / 1 000 000
Casos
30 casos conhecidos
Herança
Autosomal recessive
CID-10
Q78.5 · Displasia metafisária
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0265294
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
Genética mendeliana
fonte: OMIM
Indexação biomédica
fonte: MeSH (NLM)
Dado público estruturado
fonte: Wikidata
Rara