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Epidermólise bolhosa distrófica regenerativa
ORPHA:79411CID-10 · Q81.2CID-11 · EC32OMIM 131705DOENÇA RARA

A dermólise bolhosa transitória do recém-nascido é um subtipo raro de epidermólise bolhosa distrófica (DEB) caracterizada por bolhas generalizadas ao nascimento que geralmente regridem nos primeiros 6 a 24 meses de vida.

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Introdução

O que você precisa saber de cara

📋

A dermólise bolhosa transitória do recém-nascido é um subtipo raro de epidermólise bolhosa distrófica (DEB) caracterizada por bolhas generalizadas ao nascimento que geralmente regridem nos primeiros 6 a 24 meses de vida.

Publicações científicas
17 artigos
Último publicado: 2024 Jul-Aug

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
52
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q81.2
🇧🇷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

🧬
Pele e cabelo
6 sintomas
🦷
Dentes
2 sintomas
💪
Músculos
1 sintomas
👁️
Olhos
1 sintomas
🫘
Rins
1 sintomas
📏
Crescimento
1 sintomas

+ 15 sintomas em outras categorias

Características mais comuns

100%prev.
Bolhas anormais na pele
Frequente (79-30%)
100%prev.
Início neonatal
Frequência: 6/6
90%prev.
Anormalidade generalizada da pele
Muito frequente (99-80%)
55%prev.
Anoníquia
Frequente (79-30%)
55%prev.
Distrofia ungueal
Frequente (79-30%)
55%prev.
Bolhas na mucosa oral
Frequente (79-30%)
30sintomas
Muito frequente (3)
Frequente (7)
Ocasional (3)
Muito raro (15)
Sem dados (2)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 30 características clínicas mais associadas, ordenadas por frequência.

Bolhas anormais na peleAbnormal blistering of the skin
Frequente (79-30%)100%
Início neonatalNeonatal onset
Frequência: 6/6100%
Anormalidade generalizada da peleGeneralized abnormality of skin
Muito frequente (99-80%)90%
AnoníquiaAnonychia
Frequente (79-30%)55%
Distrofia unguealNail dystrophy
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico17PubMed
Últimos 10 anos8publicações
Pico20213 papers
Linha do tempo
2026Hoje · 2026📈 2021Ano 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, Autosomal recessive.

COL7A1Collagen alpha-1(VII) chainDisease-causing germline mutation(s) (loss of function) inTolerante
FUNÇÃO

Stratified squamous epithelial basement membrane protein that forms anchoring fibrils which may contribute to epithelial basement membrane organization and adherence by interacting with extracellular matrix (ECM) proteins such as type IV collagen

LOCALIZAÇÃO

Secreted, extracellular space, extracellular matrix, basement membrane

VIAS BIOLÓGICAS (4)
COPII-mediated vesicle transportCargo concentration in the ERCollagen biosynthesis and modifying enzymesCollagen chain trimerization
OUTRAS DOENÇAS (11)
generalized dominant dystrophic epidermolysis bullosarecessive dystrophic epidermolysis bullosatransient bullous dermolysis of the newbornnonsyndromic congenital nail disorder 8
HGNC:2214UniProt:Q02388

Variantes genéticas (ClinVar)

1,204 variantes patogênicas registradas no ClinVar.

🧬 COL7A1: NM_000094.4(COL7A1):c.7864C>G (p.Arg2622Gly) ()
🧬 COL7A1: NM_000094.4(COL7A1):c.107C>G (p.Ala36Gly) ()
🧬 COL7A1: NM_000094.4(COL7A1):c.4040G>C (p.Gly1347Ala) ()
🧬 COL7A1: NM_000094.4(COL7A1):c.6191G>C (p.Gly2064Ala) ()
🧬 COL7A1: NM_000094.4(COL7A1):c.4980+5G>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

Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Epidermólise bolhosa distrófica regenerativa

🗺️

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
2 papers (10 anos)
#1

Genotype-Phenotype Correlations in Recessive Dystrophic Epidermolysis Bullosa: A Systematic Review.

JAMA dermatology2026 Mar 01

Recessive dystrophic epidermolysis bullosa (RDEB) is a rare monogenic blistering disorder with wide clinical heterogeneity, ranging from localized skin fragility to life-limiting systemic complications. Understanding genotype-phenotype correlations in COL7A1, the causative gene, is critical for clinical prognostication, genetic counseling, and the rational design of emerging molecular therapies. To determine the frequency of genotypic and phenotypic subtypes, and to assess whether variant type or location can predict phenotypic severity and extracutaneous complications in patients with RDEB carrying homozygous variants. This was a systematic review of all RDEB genotypes and phenotypes reported to the International Dystrophic Epidermolysis Bullosa Patient Registry (DEB Registry) and eligible studies published in English from May 1993 to September 2025. PubMed, Cochrane Library, and Web of Science were searched and eligible studies were reviewed following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020) guidelines. Included studies reported bi-allelic COL7A1 variants and clinical phenotypes. Data from the DEB Registry were cross-checked to supplement the published cases. Descriptive statistics were used for data analyses, and Fisher exact and χ2 methods were used to test additional genotype-phenotype correlations in patients with RDEB carrying homozygous variants. A total of 1802 patients with RDEB comprising 1002 pathogenic variants within COL7A1 were identified from 217 articles. Among the 706 patients with homozygous variants (mean [SD; range] age, 12.2 [13.0; 0-72] years), 533 (75.5%) had severe RDEB, most frequently associated with frameshift and nonsense variants (388 [72.8%] premature termination codons [PTCs]). In contrast, intermediate and milder subtypes were associated with missense or non-PTC variants. Variant location also influenced phenotype: homozygous variants affecting the noncollagenous 1 domain were associated with severe RDEB in 74 of 83 unique variants (89.2%). Extracutaneous involvement clustered in homozygous PTC carriers and was observed almost exclusively in severe RDEB, with occasional cases in the intermediate subtype and rare instances in the inversa, localized, and self-improving subtypes. Recurrent and population-specific variants suggested founder effects. Splice site and missense variants showed phenotypic variability, with augmented intelligence-based predictions correlating with severity. In this systematic review, the type and site of pathogenic variants in COL7A1 correlated with the severity of RDEB phenotype across different nationalities, races, and ethnicities. These findings may provide improved patient prognosis, genetic counseling, and personalized therapeutics.

#2

Self-improving dystrophic epidermolysis bullosa with a novel heterozygous missense variant in the COL7A1 gene in a Taiwanese family.

Wound repair and regeneration : official publication of the Wound Healing Society [and] the European Tissue Repair Society2024

Self-improving dystrophic epidermolysis bullosa (DEB) is a genodermatosis that is inherited autosomal dominantly or recessively, and its clinical symptoms may improve or subside spontaneously. Herein, we report a case of self-improving DEB with COL7A1 p.Gly2025Asp variant. The diagnosis was made through histopathological, electron microscopic examination, and genetic testing. The same variant is also noted on his father, who presents with dystrophic toenails without any blisters. This study highlights that idiopathic nail dystrophy could be linked to congenital or hereditary disease. Furthermore, we conducted a review of the literature on the characteristics of reported cases of self-improving DEB with a personal or family history of nail dystrophy. The results supported our findings that nail dystrophy may be the sole manifestation in some family members. We suggest that individuals suffering from idiopathic nail dystrophy may seek genetic counselling when planning pregnancy to early evaluate the potential risk of hereditary diseases.

#3

A newborn with dystrophic epidermolysis bullosa, self-improving and mother with epidermolysis bullosa pruriginosa.

Pediatrics and neonatology2023 Sep
#4

Immunofluorescence mapping, electron microscopy and genetics in the diagnosis and sub-classification of inherited epidermolysis bullosa: a single-centre retrospective comparative study of 87 cases with long-term follow-up.

Journal of the European Academy of Dermatology and Venereology : JEADV2021 Apr

Epidermolysis bullosa (EB) comprises a heterogeneous group of skin fragility disorders, classified in four major types based on skin cleavage level, i.e. EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), Kindler EB, and in more than 30 subtypes defined by the combination of laboratory and clinical data, including disease course. Our aims were to address whether, in the age of genomics, electron microscopy (TEM) has still a role in diagnosing EB, and whether the genotype per se may be sufficient to sub-classify EB. A thoroughly characterized single-centre EB case series was retrospectively evaluated to compare the power of TEM with immunofluorescence mapping (IFM) in establishing the EB type, and the ability of TEM, IFM and genetics to predict selected EB subtypes, i.e. severe dominant EBS (DEBS), severe JEB, severe recessive DEB (RDEB) and DEB self-improving, using genetic and final diagnosis, respectively, as gold standard. The series consisted of 87 patients, including 44 newborns, with a median follow-up of 54 months. Ninety-five mutations were identified in EB-associated genes, including 25 novel variants. Both IFM and TEM were diagnostic in about all cases of JEB (21/21 for both) and DEB (43/44 for IFM, 44/44 for TEM). TEM sensitivity was superior to IFM for EBS (19/20 vs. 16/19). As to EB subtyping, IFM performed better than genetics in identifying severe JEB cases due to laminin-332 defect (14/14 vs. 10/14) and severe RDEB (eight/nine vs. seven/nine). Genetics had no role in self-improving DEB diagnosis; it almost equalled TEM in predicting severe DEBS (eight/nine vs. nine/nine) and enabled to discriminate dominant from recessive non-severe DEB phenotypes and to identify special subtypes, e.g. DEBS with KLHL24 mutations. Transmission electron microscopy remains relevant to the diagnosis of EBS. IFM and genetics are essential and complementary tools in the vast majority of EB cases.

#5

Self-improving dystrophic epidermolysis bullosa: First report of clinical, molecular, and genetic characterization of five patients from Southeast Asia.

American journal of medical genetics. Part A2021 Feb

Self-improving dystrophic epidermolysis bullosa is a rare subtype of dystrophic epidermolysis bullosa (DEB) characterized by significant improvement in skin fragility within the first few years of life. Genetic inheritance has previously been reported as autosomal dominant or recessive with both forms harboring mutations in COL7A1. To date, there have been no reports of this rare clinical entity from various Southeast Asian ethnicities. Here, we describe the clinical and molecular features of five patients from the Southeast Asia region who presented with predominantly acral-distributed blisters and erosions in the first few days of life. Blistering resolved over several months, without appearance of new blisters. By immunofluorescence, intraepidermal retention of Type VII collagen was observed in all patient skin biopsies when investigated with antibody staining. Genetic analysis of four patients revealed pathogenic variants in COL7A1 which have not been previously reported. The clinical diagnosis in these rare patients is confirmed with molecular histology and genetic characterization.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC2 artigos no totalmostrando 8

2026

Genotype-Phenotype Correlations in Recessive Dystrophic Epidermolysis Bullosa: A Systematic Review.

JAMA dermatology
2024

Self-improving dystrophic epidermolysis bullosa with a novel heterozygous missense variant in the COL7A1 gene in a Taiwanese family.

Wound repair and regeneration : official publication of the Wound Healing Society [and] the European Tissue Repair Society
2023

A newborn with dystrophic epidermolysis bullosa, self-improving and mother with epidermolysis bullosa pruriginosa.

Pediatrics and neonatology
2020

Self-improving dominant dystrophic epidermolysis bullosa: phenotypic variability associated with COL7A1 mutation p.Gly2037Glu.

European journal of dermatology : EJD
2021

Congenital absence of the skin secondary to the self-improving subtype of dystrophic epidermolysis bullosa with recurrent lesions throughout early childhood.

JAAD case reports
2021

Immunofluorescence mapping, electron microscopy and genetics in the diagnosis and sub-classification of inherited epidermolysis bullosa: a single-centre retrospective comparative study of 87 cases with long-term follow-up.

Journal of the European Academy of Dermatology and Venereology : JEADV
2021

Self-improving dystrophic epidermolysis bullosa: First report of clinical, molecular, and genetic characterization of five patients from Southeast Asia.

American journal of medical genetics. Part A
2020

Skin fragility caused by biallelic KRT10 mutations: an intriguing form of self-improving epidermolytic ichthyosis.

The British journal of dermatology

Associações

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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

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. Genotype-Phenotype Correlations in Recessive Dystrophic Epidermolysis Bullosa: A Systematic Review.
    JAMA dermatology· 2026· PMID 41637086mais citado
  2. Self-improving dystrophic epidermolysis bullosa with a novel heterozygous missense variant in the COL7A1 gene in a Taiwanese family.
    Wound repair and regeneration : official publication of the Wound Healing Society [and] the European Tissue Repair Society· 2024· PMID 38415502mais citado
  3. A newborn with dystrophic epidermolysis bullosa, self-improving and mother with epidermolysis bullosa pruriginosa.
    Pediatrics and neonatology· 2023· PMID 37037756mais citado
  4. Immunofluorescence mapping, electron microscopy and genetics in the diagnosis and sub-classification of inherited epidermolysis bullosa: a single-centre retrospective comparative study of 87 cases with long-term follow-up.
    Journal of the European Academy of Dermatology and Venereology : JEADV· 2021· PMID 33274474mais citado
  5. Self-improving dystrophic epidermolysis bullosa: First report of clinical, molecular, and genetic characterization of five patients from Southeast Asia.
    American journal of medical genetics. Part A· 2021· PMID 33258232mais citado
  6. Transient bullous dermolysis of the newborn: a novel de novo mutation in the COL7A1 gene.
    Int J Dermatol· 2015· PMID 25800346recente
  7. Novel COL7A1 mutations in a Japanese family with transient bullous dermolysis of the newborn associated with pseudosyndactyly.
    Br J Dermatol· 2007· PMID 17501948recente
  8. Transient bullous dermolysis of the newborn in three generations.
    Br J Dermatol· 2005· PMID 16225626recente
  9. Three new cases of transient bullous dermolysis of the newborn.
    J Am Acad Dermatol· 1999· PMID 10071321recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:79411(Orphanet)
  2. OMIM OMIM:131705(OMIM)
  3. MONDO:0007548(MONDO)
  4. GARD:10010(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q7834264(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

Epidermólise bolhosa distrófica regenerativa
Compêndio · Raras BR

Epidermólise bolhosa distrófica regenerativa

ORPHA:79411 · MONDO:0007548
Prevalência
<1 / 1 000 000
Casos
52 casos conhecidos
Herança
Autosomal dominant, Autosomal recessive
CID-10
Q81.2 · Epidermólise bolhosa distrófica
CID-11
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1851573
EuropePMC
Wikidata
Papers 10a
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