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Doença de Caffey
ORPHA:1310CID-10 · M89.8CID-11 · LD24.1YOMIM 114000DOENÇA RARA

A doença de Caffey é uma displasia osteosclerótica caracterizada por inflamação aguda com formação maciça de novo osso subperiosteal, geralmente envolvendo as diáfises dos ossos longos, bem como as costelas, mandíbula, escápulas e clavículas. A doença está associada a febre, irritabilidade, dor e inchaço dos tecidos moles, com início por volta dos 2 meses de idade e resolução espontânea aos 2 anos de idade. No entanto, o início da doença pré-natal também foi descrito.

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Introdução

O que você precisa saber de cara

📋

A doença de Caffey é uma displasia osteosclerótica caracterizada por inflamação aguda com formação maciça de novo osso subperiosteal, geralmente envolvendo as diáfises dos ossos longos, bem como as costelas, mandíbula, escápulas e clavículas. A doença está associada a febre, irritabilidade, dor e inchaço dos tecidos moles, com início por volta dos 2 meses de idade e resolução espontânea aos 2 anos de idade. No entanto, o início da doença pré-natal também foi descrito.

Publicações científicas
82 artigos
Último publicado: 2025 Oct

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
Unknown
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Worldwide
Casos conhecidos
100
pacientes catalogados
Início
Antenatal
+ childhood, infancy, neonatal
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: M89.8
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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
5 sintomas
😀
Face
2 sintomas
📏
Crescimento
1 sintomas
🧠
Neurológico
1 sintomas
👁️
Olhos
1 sintomas
🫁
Pulmão
1 sintomas

+ 14 sintomas em outras categorias

Características mais comuns

100%prev.
Espessamento periosteal de ossos tubulares longos
Frequente (79-30%)
100%prev.
Formação óssea subperiosteal
Frequência: 3/3
90%prev.
Celulite
Muito frequente (99-80%)
90%prev.
Irregularidade cortical
Muito frequente (99-80%)
55%prev.
Hiperestesia
Frequente (79-30%)
55%prev.
Comportamento atípico
Frequente (79-30%)
25sintomas
Muito frequente (4)
Frequente (3)
Ocasional (8)
Sem dados (10)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 25 características clínicas mais associadas, ordenadas por frequência.

Espessamento periosteal de ossos tubulares longosPeriosteal thickening of long tubular bones
Frequente (79-30%)100%
Formação óssea subperiostealSubperiosteal bone formation
Frequência: 3/3100%
CeluliteCellulitis
Muito frequente (99-80%)90%
Irregularidade corticalCortical irregularity
Muito frequente (99-80%)90%
HiperestesiaHyperesthesia
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa4desde 2022
Total histórico82PubMed
Últimos 10 anos27publicações
Pico20256 papers
Linha do tempo
2022Hoje · 2026🧪 2016Primeiro ensaio clínico📈 2025Ano de pico
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 dominant, Unknown.

COL1A1Collagen alpha-1(I) chainDisease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Type I collagen is a member of group I collagen (fibrillar forming collagen)

LOCALIZAÇÃO

Secreted, extracellular space, extracellular matrix

VIAS BIOLÓGICAS (10)
MET activates PTK2 signalingDevelopmental Lineage of Pancreatic Ductal CellsAssembly of collagen fibrils and other multimeric structuresECM proteoglycansFibronectin matrix formation
MECANISMO DE DOENÇA

Caffey disease

An autosomal dominant disorder characterized by an infantile episode of massive subperiosteal new bone formation that typically involves the diaphyses of the long bones, mandible, and clavicles. The involved bones may also appear inflamed, with painful swelling and systemic fever often accompanying the illness. The bone changes usually begin before 5 months of age and resolve before 2 years of age.

OUTRAS DOENÇAS (13)
Ehlers-Danlos syndrome type 7Aosteogenesis imperfecta type 3osteogenesis imperfecta type 4osteogenesis imperfecta type 1
HGNC:2197UniProt:P02452

Variantes genéticas (ClinVar)

1,756 variantes patogênicas registradas no ClinVar.

🧬 COL1A1: NM_000088.4(COL1A1):c.1060G>T (p.Glu354Ter) ()
🧬 COL1A1: NM_000088.4(COL1A1):c.616G>C (p.Gly206Arg) ()
🧬 COL1A1: NM_000088.4(COL1A1):c.724G>C (p.Gly242Arg) ()
🧬 COL1A1: NM_000088.4(COL1A1):c.2254G>A (p.Gly752Ser) ()
🧬 COL1A1: NM_000088.4(COL1A1):c.3433G>A (p.Gly1145Ser) ()
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

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Doença de Caffey

🗺️

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
29 papers (10 anos)
#1

Unravelling the challenges in diagnosing Caffey disease.

BMJ case reports2025 Jun 04

Caffey disease, also known as Infantile Cortical Hyperostosis, is a rare yet significant self-limiting disorder that primarily affects infants. The condition is characterised by acute inflammation of the periosteum, cortical hyperostosis, and soft tissue swelling, often accompanied by systemic manifestations such as fever and irritability. The case describes a male infant with progressive left thigh swelling appearing 10 days post-immunisation, with no systemic symptoms. Examination revealed a bony-hard swelling with elevated inflammatory markers and alkaline phosphatase. Radiographs showed cortical thickening, and biopsy confirmed Caffey disease (Infantile Cortical Hyperostosis). Differential diagnoses like osteomyelitis and malignancy were ruled out. Conservative management with symptomatic relief led to complete resolution within 3 months, highlighting the importance of early diagnosis to avoid unnecessary interventions.

#2

Fetal MRI and postnatal findings of severe infantile cortical hyperostosis: A case report of prenatal Caffey disease with literature review.

Radiology case reports2025 Sep

Caffey disease, also known as infantile cortical hyperostosis, is a rare skeletal disorder characterized by self-limited cortical bone hyperostosis and soft tissue swelling, typically presenting within the first 6 months of life. We report a rare case of prenatal Caffey disease, with fetal MRI imaging and postnatal radiographs demonstrating the hallmark findings of severe cortical hyperostosis. A current review of literature details the varied sporadic and familial origins of infantile cortical hyperostosis revealing a genetic link with a mutation of the COL1A1 gene coding for type 1 collagen. Differential diagnostic considerations are also reviewed for potentially similar patterns of bone diseases encountered in the neonatal period. This case presentation aims to review the clinical, genetic, and imaging implications of this unique disease to aid radiologists and clinicians towards accurate diagnosis, prognosis, and management. While supportive care remains the mainstay of treatment of Caffey disease, the prognosis is generally favorable, with spontaneous resolution being the most common outcome.

#3

Osteomyelitis of the Jaw Bones and Its Mimics: Resolving the Diagnostic Enigma.

The Indian journal of radiology &amp; imaging2025 Jul

Jaw osteomyelitis is a severe inflammatory condition affecting the maxilla or mandible, posing diagnostic and therapeutic challenges. An early and accurate diagnosis is crucial to initiating appropriate treatment and preventing potential complications. Radiological imaging plays a pivotal role in diagnosing and evaluating jaw osteomyelitis, providing valuable insights into the extent of the disease and aiding clinicians in making informed decisions. One of the most important aspects of imaging is to differentiate them from the noninfectious mimics, which can closely mimic their imaging appearance. This article aims to present a comprehensive overview of imaging in jaw osteomyelitis, focusing on the critical clinical and imaging markers that distinguish it from its noninfectious imitators.

#4

Insights into Natural History, Phenotypic, and Molecular Spectrum in a Large Cohort of Osteosclerotic Disorders.

Calcified tissue international2025 Apr 08

Osteosclerotic bone diseases include more than 30 rare diseases characterized by excessive bone formation. The aim of this study is to compare the molecular pathogenesis and prognostic features of 12 different osteosclerotic diseases. Thirty-four patients from 23 families were included, 25 of whom were followed for a period of one to 22 years. Exome sequencing was performed in 20 families. Primary hypertrophic osteoarthropathy (PHOAR1/2) was found in 12 patients, followed by juvenile Paget's disease (JPD)-5 in five, craniometaphyseal dysplasia (CMD) and Camurati-Engelmann disease (CED) in four, Ghosal hematodiaphyseal dysplasia (GHDD) in three patients, sclerosteosis-1 in two patients, and ultra-rare diseases including trichothiodystrophy-1, prenatal Caffey disease, melorheosteosis, and Lenz-Majewski hyperostotic dwarfism in one patient each. Patients with CMD and sclerosteosis-1 had severe cranial sclerosis leading to facial dysmorphism. CMD was characterized by metaphyseal widening, radiolucency, and diaphyseal sclerosis of the long bones in early childhood and later developed Erlenmeyer flask deformity sparing the vertebrae and pelvis, whereas sclerosteosis-1 manifested as generalized sclerosis. CED and GHDD share bone pain, difficulty in walking, and diaphyseal sclerosis, with some patients also having bone marrow involvement. Interestingly, patients with CED and JPD-5 showed osteopenia in early childhood, followed by the development of osteosclerosis in late childhood. Clinical and radiologic findings improved over time in PHOAR1 patients, whereas they progressed in JPD-5 and trichothiodystrophy-1 patients. Intra- and interfamilial clinical differences were observed in CMD, CED, JPD-5, and GHDD. The knowledge gained about the natural history of osteosclerotic diseases will make an important contribution to their diagnosis and management.

#5

Imaging evaluation of rheumatologic musculoskeletal disorders in children.

Skeletal radiology2025 Nov

Imaging plays a vital role in the diagnosis and management of pediatric inflammatory musculoskeletal disorders. Currently, various imaging modalities are utilized in a stepwise approach, each providing complementary information. This article explores the advantages and limitations of currently available imaging techniques, including plain radiography, ultrasound (US), computed tomography (CT), and magnetic resonance imaging (MRI), in the assessment of pediatric inflammatory musculoskeletal disorders. Additionally, characteristic imaging features of major pediatric inflammatory conditions are reviewed, including juvenile idiopathic arthritis, chronic nonbacterial osteomyelitis, Caffey disease, and juvenile idiopathic inflammatory myopathies.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC55 artigos no totalmostrando 27

2025

A Newborn With Mandibular Swelling and Tibial Lumps.

Journal of paediatrics and child health
2025

Fetal MRI and postnatal findings of severe infantile cortical hyperostosis: A case report of prenatal Caffey disease with literature review.

Radiology case reports
2025

Osteomyelitis of the Jaw Bones and Its Mimics: Resolving the Diagnostic Enigma.

The Indian journal of radiology &amp; imaging
2025

Unravelling the challenges in diagnosing Caffey disease.

BMJ case reports
2025

Insights into Natural History, Phenotypic, and Molecular Spectrum in a Large Cohort of Osteosclerotic Disorders.

Calcified tissue international
2025

Imaging evaluation of rheumatologic musculoskeletal disorders in children.

Skeletal radiology
2024

Caffey disease in an infant.

BMJ case reports
2024

Monostotic femoral Caffey disease masquerading as Ewing sarcoma.

BMJ case reports
2024

Caffey's disease in disguise: a child abuse mimic.

BMJ case reports
2024

Monostotic Scapular Caffey Disease: A Case Report With MRI Correlate.

Cureus
2024

The IFITM5 Ser40Leu variant can manifest as prenatal Caffey disease.

American journal of medical genetics. Part A
2023

A Rare Case of Infantile Cortical Hyperostosis (ICH) of the Bilateral Tibia or Caffey Disease.

Cureus
2021

Differential Diagnosis between Child Abuse and Infantile Cortical Hyperostosis: A Case Report and Literature Review.

International journal of environmental research and public health
2021

Caffey disease is associated with distinct arginine to cysteine substitutions in the proα1(I) chain of type I procollagen.

Genetics in medicine : official journal of the American College of Medical Genetics
2020

Caffey Disease in Infancy: A diagnostic dilemma for primary care physicians.

Sultan Qaboos University medical journal
2020

Whole Genome Sequencing Indicates Heterogeneity of Hyperostotic Disorders in Dogs.

Genes
2020

Radiographic overlap of recurrent Caffey disease and chronic recurrent multifocal osteomyelitis (CRMO) with considerations of molecular origins.

Pediatric radiology
2019

Fetuin-A deficiency is associated with infantile cortical hyperostosis (Caffey disease).

Pediatric research
2019

Molecular mechanisms and clinical manifestations of rare genetic disorders associated with type I collagen.

Intractable &amp; rare diseases research
2018

Garre's Osteomyelitis of the Mandible Caused by Infected Tooth.

Case reports in dentistry
2017

Birth Order and Maternal Age for Reported Cases of Severe Prenatal Cortical Hyperostosis (Caffey–Silverman Disease).

AJP reports
2016

Molecular Characterization of Three Canine Models of Human Rare Bone Diseases: Caffey, van den Ende-Gupta, and Raine Syndromes.

PLoS genetics
2016

Prenatal Presentation of Lethal Variant Infantile Cortical Hyperostosis (Caffey Disease).

Ultrasound quarterly
2016

Jaw Hyperostosis in Infants: Keep in Mind Caffey's Disease.

Journal of the Belgian Society of Radiology
2016

Familial mutation in Caffey disease with reduced penetrance: A case report.

The Turkish journal of pediatrics
2015

Prenatal Caffey disease (prenatal cortical hyperostosis): severe forms with favorable outcome.

Prenatal diagnosis
2015

Infantile cortical hyperostosis - a report of Saudi family.

Sudanese journal of paediatrics
Ver todos os 55 no EuropePMC

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

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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. Unravelling the challenges in diagnosing Caffey disease.
    BMJ case reports· 2025· PMID 40473314mais citado
  2. Fetal MRI and postnatal findings of severe infantile cortical hyperostosis: A case report of prenatal Caffey disease with literature review.
    Radiology case reports· 2025· PMID 40620547mais citado
  3. Osteomyelitis of the Jaw Bones and Its Mimics: Resolving the Diagnostic Enigma.
    The Indian journal of radiology &amp; imaging· 2025· PMID 40529977mais citado
  4. Insights into Natural History, Phenotypic, and Molecular Spectrum in a Large Cohort of Osteosclerotic Disorders.
    Calcified tissue international· 2025· PMID 40198394mais citado
  5. Imaging evaluation of rheumatologic musculoskeletal disorders in children.
    Skeletal radiology· 2025· PMID 40156723mais citado
  6. A Newborn With Mandibular Swelling and Tibial Lumps.
    J Paediatr Child Health· 2025· PMID 40899603recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:1310(Orphanet)
  2. OMIM OMIM:114000(OMIM)
  3. MONDO:0007244(MONDO)
  4. GARD:1051(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q3801522(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

Compêndio · Raras BR

Doença de Caffey

ORPHA:1310 · MONDO:0007244
Prevalência
Unknown
Casos
100 casos conhecidos
Herança
Autosomal dominant, Unknown
CID-10
M89.8 · Outros transtornos especificados do osso
CID-11
Início
Antenatal, Childhood, Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0020497
EuropePMC
Wikidata
Papers 10a
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