Pular para o conteúdo
Distrofia reticular do epitélio pigmentar da retina
ORPHA:99002CID-10 · H35.5CID-11 · 9B70OMIM 179840DOENÇA RARA
Esta doença tem causa genética. Recomendamos procurar um médico geneticista para diagnóstico, exames genéticos e aconselhamento familiar.
Início adultaHerança AR/Unknown

A distrofia reticular do epitélio pigmentar da retina é uma doença progressiva (que piora com o tempo) que afeta uma camada de células no fundo do olho. Ela se manifesta pela formação de um padrão escuro e em formato de rede, parecido com uma rede de pesca com nós, nos dois olhos. Isso causa uma perda de visão lenta e gradual, que muitas vezes só é percebida na idade avançada. Essa distrofia pode estar acompanhada de outras condições, como enfraquecimento e abaulamento da parte branca do olho (esclera), formação de vasos sanguíneos anormais na coroide (uma camada de vasos do olho), estrabismo convergente (olho vesgo que desvia para dentro), cristalino (a lente natural do olho) com formato mais redondo que o normal, miopia e deslocamento da lente, além de atrofia parcial da íris (a parte colorida do olho).

Em construçãohistóricoSugerir correção
Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

💬
EM LINGUAGEM SIMPLES

A distrofia reticular do epitélio pigmentar da retina é uma condição genética rara que atinge uma camada profunda dos olhos. Ela provoca manchas escuras com aspecto de rede no fundo dos olhos e causa perda lenta da nitidez da visão na idade adulta. Não há remédio curativo específico no mundo nem protocolo clínico exclusivo (PCDT) no SUS, sendo o cuidado baseado no acompanhamento oftalmológico.

📋
Informacoes curadas por IA — podem conter imprecisoes

A distrofia reticular do epitélio pigmentar da retina é uma doença progressiva (que piora com o tempo) que afeta uma camada de células no fundo do olho. Ela se manifesta pela formação de um padrão escuro e em formato de rede, parecido com uma rede de pesca com nós, nos dois olhos. Isso causa uma perda de visão lenta e gradual, que muitas vezes só é percebida na idade avançada. Essa distrofia pode estar acompanhada de outras condições, como enfraquecimento e abaulamento da parte branca do olho (esclera), formação de vasos sanguíneos anormais na coroide (uma camada de vasos do olho), estrabismo convergente (olho vesgo que desvia para dentro), cristalino (a lente natural do olho) com formato mais redondo que o normal, miopia e deslocamento da lente, além de atrofia parcial da íris (a parte colorida do olho).

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
9
pacientes catalogados
Início
Adult
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: H35.5
Você se identifica com essa condição?
O Raras está aqui pra te apoiar — com ou sem diagnóstico

Encontrou um erro ou informação desatualizada? Sugira uma correção →

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

👁️
Olhos
2 sintomas
🧠
Neurológico
1 sintomas
📏
Crescimento
1 sintomas
🫁
Pulmão
1 sintomas

+ 2 sintomas em outras categorias

Características mais comuns

—
Distrofia retiniana
—
Acuidade visual reduzida
—
Deficiência intelectual, leve
—
Amenorreia secundária
—
Insuficiência ovariana prematura
—
Bócio
7sintomas
Sem dados (7)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 7 características clínicas mais associadas, ordenadas por frequência.

Distrofia retinianaRetinal dystrophy
Acuidade visual reduzidaReduced visual acuity
Deficiência intelectual, leveIntellectual disability, mild
Amenorreia secundáriaSecondary amenorrhea
Insuficiência ovariana prematuraPremature ovarian insufficiency

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Últimos 10 anos19publicações
Pico20165 papers
Linha do tempo
2026Hoje · 2026📈 2016Ano 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 recessive, Unknown.

RCBTB1RCC1 and BTB domain-containing protein 1Disease-causing germline mutation(s) inTolerante
MECANISMO DE DOENÇA

Retinal dystrophy with or without extraocular anomalies

An autosomal recessive disease characterized by progressive retinal dystrophy, chorioretinal macular atrophy, reduced cone and rod responses on ERG, and decrease visual acuity. Extraocular anomalies are variably present in some patients and include pulmonary fibrosis, sensorineural hearing loss, and endocrine features such as goiter and primary ovarian insufficiency.

EXPRESSÃO TECIDUAL(Ubíquo)
Tireoide
77.1 TPM
Brain Spinal cord cervical c-1
37.8 TPM
Glândula adrenal
33.7 TPM
Útero
30.5 TPM
Substância negra
29.0 TPM
INTERAÇÕES PROTEICAS (1)
OUTRAS DOENÇAS (2)
RCBTB1-related retinopathyreticular dystrophy of the retinal pigment epithelium
HGNC:18243UniProt:Q8NDN9

Variantes genéticas (ClinVar)

103 variantes patogênicas registradas no ClinVar.

🧬 RCBTB1: NM_018191.4(RCBTB1):c.1073_1074del (p.Glu358fs) ()
🧬 RCBTB1: NM_018191.4(RCBTB1):c.383del (p.Lys128fs) ()
🧬 RCBTB1: NM_018191.4(RCBTB1):c.603+1G>A ()
🧬 RCBTB1: NM_018191.4(RCBTB1):c.686C>G (p.Ala229Gly) ()
🧬 RCBTB1: NM_018191.4(RCBTB1):c.127-5_145del ()
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 — Distrofia reticular do epitélio pigmentar da retina

🗺️

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.

🧪 Está conduzindo uma pesquisa?
Divulgue para pacientes e familiares que acompanham esta doença.
Divulgar pesquisa →

Publicações mais relevantes

Timeline de publicações
0 papers (10 anos)
#1

Vitelliform lesions and choroidal changes in chorioretinal disorders: pathophysiological insights and clinical implications.

Eye (London, England)2026 Jan

This narrative review aims to explore the correlation between choroidal thickness (CT), broader choroidal changes, and the development and progression of vitelliform lesions, with a focus on their potential modulatory role-whether primary or secondary- through mechanisms involving choriocapillaris (CC) and retinal pigment epithelium (RPE) dysfunction. CT was found to be significantly increased in various vitelliform maculopathies, including adult-onset foveomacular vitelliform dystrophy (AOFVD), Best disease, autosomal recessive bestrophinopathy, age-related macular degeneration (AMD), and pachychoroid disease spectrum (PDS) disorders. Notably, increased subfoveal CT was associated with the presence and progression of subretinal hyperreflective material and subretinal fluid in AOFVD and Best disease. In PDS disorders, choroidal thickening, pachyvessels, and choroidal vascular hyperpermeability were identified as key contributors to RPE dysfunction and vitelliform lesion formation. Conversely, leptovitelliform maculopathy was characterised by thinner choroid in association with reticular pseudodrusen or subretinal drusenoid deposits. An important feature is CC dysfunction, which is often associated with pachyvessels, even in the absence of a clear pachychoroid-related phenotype or choroidal thickening. These findings underscore the importance of CT evaluation in clinical practice and highlight the need for further research to elucidate the complex relationship between CT and vitelliform maculopathies.

#2

LeptoVitelliform Maculopathy: delineating a distinct clinical entity from acquired vitelliform lesions.

Eye (London, England)2024 Nov

To characterize acquired vitelliform lesions associated with leptochoroid (i.e., diffuse choroidal thinning) and reticular pseudodrusen (RPD) and compare this phenotype to the acquired vitelliform lesion (AVL) in the dystrophic spectrum. This retrospective, observational case-control study enrolled 56 patients (56 eyes) affected by vitelliform lesions (AVL), including 27 patients with AVL associated with RPD and leptochoroid (i.e., choroidal thinning) referred to as LeptoVitelliform Maculopathy (LVM), and 29 AVL patients without other funduscopic abnormalities. The main structural features analysed were the integrity of the external limiting membrane (ELM), ellipsoid zone (EZ), and retinal pigment epithelium (RPE), the presence of hyporeflective spaces, and hypertransmission. Choroidal vascular index (CVI) was calculated using ImageJ software. Patients with LVM were 6.69 years older and presented smaller vitelliform lesions considering both vertical (P < 0.001) and horizontal diameters (P < 0.001) with a similar visual impairment compared to the AVL group (P = 0.27). The LVM subgroup showed a greater alteration of the ELM (p < 0.001) and choroidal hypertransmission (i = 0.007), accompanied by less frequent RPE bumps (P = 0.001) and hyporeflective spaces within the vitelliform material (P = 0.002). Furthermore, the LVM group presented a lower CVI with a significant attenuation on both the luminal and stromal compartments compared to AVL (P < 0.001, both). The phenotypic combination of subretinal vitelliform lesion and RPD may delineate a distinct phenotype that shares with AVL only the presence of vitelliform material and a similar visual deterioration. The presented findings of LVM highlight significant structural and microvascular alterations that may hold prognostic relevance, warranting future longitudinal studies. Retinal pattern dystrophies are a slowly progressive heterogeneous group of primarily autosomal dominantly inherited macular diseases whose unifying element involves the deposition of pigment in the retinal pigment epithelium (RPE) of the macula.  Although findings are classically and most often centered in the macula, pigment deposition may also occur in the periphery. Depending on the distribution pattern, these pattern dystrophies can be separated into major categories or types. These include reticular dystrophy, fundus pulverulentus, butterfly-shaped pigment dystrophy, adult-onset foveomacular vitelliform dystrophy, and multifocal pattern dystrophy simulating Stargardt disease. Interestingly, within a patient, a given pattern may transform into another pattern. Each eye may have distinct patterns, and the same familial mutation can correspond to different phenotypic patterns.  Visual prognosis is typically good in these patients, but due to the location of the pigment deposition in the macula and its slowly progressive nature, there is always the possibility of central vision loss and secondary complications such as choroidal neovascularization and macular holes. Patients typically remain asymptomatic until the fourth to fifth decade of life, when they may start to notice changes in central vision. The appearance of pattern dystrophies may lead to misdiagnosis as age-related macular degeneration (AMD), especially given that later stages of pattern dystrophies may resemble AMD and pigment deposits can resemble drusen. Distinguishing pattern dystrophies from AMD requires further workup and follow-up.

#3

Observations for Sjögren's Pigment Epithelial Reticular Dystrophy in a 16-Year-Old Boy-An Extremely Rare Retinal Case Report.

Journal of clinical medicine2023 Feb 10

The purpose of this publication is to present an extremely rare case of Sjögren's pigment epithelial reticular dystrophy. So far, 10 such publications have been found in world literature. A 16-year-old boy was diagnosed due to a slight loss of visual acuity, confirmed in static perimetry/24-2/. Abnormal dense clusters of retinal pigment epithelium (RPE) cells forming a reticular network pattern (resembling a fishing net) with marked knots were detected by fundoscopy in the macular area and the mid-periphery of the retina. No abnormalities were found in the anterior segment, intraocular pressure, kinetic perimetry, Ishihara or Farnsworth D-15 tests or OCT. Fluorescein angiography confirmed blocked fluorescence from the choroidal vessels caused by the pigment in RPE. An autofluorescence test showed hypofluorescent foci corresponding to symmetrical and bilateral retinal hyperpigmentation with an RPE reticular pattern. Multifocal ERG (mfERG) revealed slight cone photoreceptor and bipolar bioelectrical dysfunction. Electrooculography (EOG) showed significant asymmetry (Arden Ratio 1.8), suggesting bioelectrical dysfunction of RPE/photoreceptors. Flash ERG (ERG) revealed only slight increase in implicit time of the a and b waves of the rod and cone responses and exclude cone-rod dystrophies. This article highlights the importance of the results of ophthalmoscopy, fluorescein angiography, autofluorescence, mfERG, fERG, EOG and genetic tests for Sjögren's reticular dystrophy with a pathogenic variant in the region of the C2 gene-c.841_849+19del (dbSNP rs9332736).

#4

Spectral domain optical coherence tomography findings in myotonic dystrophy.

Neuromuscular disorders : NMD2020 Feb

The purpose of the study is to evaluate retinal involvement in a cohort of patients affected by Myotonic Dystrophy type 1 (DM1). Both eyes of 30 patients and one eye of a 31st patient with genetically proven diagnosis of DM1 and both eyes of 20 healthy age- and gender-matched subjects were enrolled. All patients underwent complete ophthalmologic examination including best-corrected visual acuity, intraocular pressure measurement, fundoscopy, fundus autofluorescence, infrared imaging and spectral-domain optical coherence tomography with central macular thickness measurement. DM1 patients showed statistically significant higher central macular thickness values than controls. In the DM1 group, butterfly (14.8%) and reticular (13.1%) pigment abnormalities were found with corresponding drusenoid deposit and focal disruption of photoreceptor and retinal pigment epithelium layers. Compared with the controls, DM1 group had higher prevalence of epiretinal membrane. In the DM1 group, the prevalence of epiretinal membrane and retinal pigment epithelium alterations were directly correlated with age, whereas no correlation was found with disease duration, CTG expansion and MIRS score. In conclusion, in addition to the typical retinal pigment epithelium changes, DM1 is also associated with abnormalities of the vitreoretinal interface, particularly epiretinal membrane, resulting in central macular thickness increase. Both inner and outer retinal alterations were associated with increasing age, suggesting that DM1 may cause a premature aging of the retina.

#5

DIFFUSE CHORIORETINOPATHY WITHOUT SEROUS DETACHMENT ASSOCIATED WITH CARDIAC TRANSPLANTATION.

Retinal cases &amp; brief reports2020

To analyze an unusual case of widespread chorioretinopathy after cardiac transplantation for its potential etiology and clinical significance. Clinical examinations included widefield and macular color and fundus autofluorescence photography, spectral domain optical coherence tomography, fluorescein angiography and indocyanine green angiography, full-field electroretinography, and Goldmann visual fields. A 44-year-old Hispanic woman was referred to rule out retinitis pigmentosa. Medical history revealed cardiac transplantation 6 months previously for idiopathic cardiomyopathy. Visual acuity was 20/20 in both eyes. The fundi showed widespread gray mottling and little pigmentation, but fundus autofluorescence revealed black speckling broadly across the fundus, and geographic retinal pigment epithelium loss in the nasal midperiphery of the left eye. Spectral domain optical coherence tomography showed normal inner retina, and surprising preservation of outer nuclear layer, but the ellipsoid zone line was fragmented, and the interdigitation zone line was replaced with irregular debris. Retinal pigment epithelium was very thin with occasional excrescences. Electroretinography showed mild loss of both rods and cones, with mild flicker peak delay only in the left eye. Fluorescein angiography showed no leakage, but a reticular pigment pattern in the macula. Indocyanine green angiography showed irregular arteriolar remodeling, and few large arteries. Serous retinopathy is well known after organ transplantations, but this patient had retinal pigment epithelium and retinal damage well into the periphery and no leakage. Retinal dystrophy was deemed unlikely given the relatively good electroretinography. The indocyanine green vascular changes raise the possibility of a transient choroidal ischemic event during or shortly after cardiac surgery. The event altered retinal pigment epithelium diffusely, but allowed for enough regeneration to sustain retinal function. Diffuse transplant chorioretinopathy may be discovered if postcardiac transplant patients get peripheral retinal examinations.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC6 artigos no totalmostrando 17

2026

Vitelliform lesions and choroidal changes in chorioretinal disorders: pathophysiological insights and clinical implications.

Eye (London, England)
2024

LeptoVitelliform Maculopathy: delineating a distinct clinical entity from acquired vitelliform lesions.

Eye (London, England)
2023

Observations for Sjögren's Pigment Epithelial Reticular Dystrophy in a 16-Year-Old Boy-An Extremely Rare Retinal Case Report.

Journal of clinical medicine
2020

Spectral domain optical coherence tomography findings in myotonic dystrophy.

Neuromuscular disorders : NMD
2019

Case Series: Multimodal Imaging Reveals the Spectrum of Pattern Dystrophies of the Retinal Pigment Epithelium.

Optometry and vision science : official publication of the American Academy of Optometry
2018

Inborn Errors of Metabolism: Pseudoxanthoma Elasticum.

Advances in experimental medicine and biology
2019

Reticular pseudodrusen: current understanding.

Clinical &amp; experimental optometry
2020

DIFFUSE CHORIORETINOPATHY WITHOUT SEROUS DETACHMENT ASSOCIATED WITH CARDIAC TRANSPLANTATION.

Retinal cases &amp; brief reports
2017

Quantitative Fundus Autofluorescence in Pseudoxanthoma Elasticum.

Investigative ophthalmology &amp; visual science
2018

Multimodal imaging of posterior ocular involvement in McArdle's disease.

Clinical &amp; experimental optometry
2016

Progression of Macular Atrophy in Pattern Dystrophies.

Ophthalmic surgery, lasers &amp; imaging retina
2016

Frequency, Phenotypic Characteristics and Progression of Atrophy Associated With a Diseased Bruch's Membrane in Pseudoxanthoma Elasticum.

Investigative ophthalmology &amp; visual science
2016

Differentiating drusen: Drusen and drusen-like appearances associated with ageing, age-related macular degeneration, inherited eye disease and other pathological processes.

Progress in retinal and eye research
2016

Prevalence of reticular pseudodrusen in newly presenting adult onset foveomacular vitelliform dystrophy.

Eye (London, England)
2016

[Diabetes and reticular macular dystrophy].

Journal francais d'ophtalmologie
2015

Reticular Pseudodrusen: A Common Pathogenic Mechanism Affecting the Choroid-Bruch's Membrane Complex and Retinal Pigment Epithelium for Different Retinal and Macular Diseases.

Investigative ophthalmology &amp; visual science
2015

Reticular Pseudodrusen in Sorsby Fundus Dystrophy.

Ophthalmology

Associações

Organizações que acompanham esta doença — pra ter apoio e orientação

Ainda não temos associações cadastradas para Distrofia reticular do epitélio pigmentar da retina.

É de uma associação que acompanha esta doença? Fale com a gente →

Doença com base genética

Um médico geneticista pode ajudar no diagnóstico de Distrofia reticular do epitélio pigmentar da retina 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

A doença está associada a mutações no gene RCBTB1. Pode ser transmitida por herança autossômica recessiva, embora em outros casos o mecanismo exato seja desconhecido.

Referências

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

7 publicações do grafo RarasNet (PubMed) · 7 bases de dados. Títulos, periódicos e PMIDs vêm direto da fonte, sem intermediação de IA.

  1. ORPHA:99002
    Orphanet
  2. GARD:16891
    GARD (NIH)
  3. Q55781448
    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.

Citar este verbete

Raras. (s.d.). Distrofia reticular do epitélio pigmentar da retina. Em Raras — Enciclopédia de Doenças Raras do Brasil. https://raras.org/doenca/distrofia-reticular-do-epitelio-pigmentar-da-retina

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

Distrofia reticular do epitélio pigmentar da retina

ORPHA:99002 · MONDO:0009979
Prevalência
<1 / 1 000 000
Casos
9 casos conhecidos
Herança
Autosomal recessive, Unknown
CID-10
H35.5 · Distrofias hereditárias da retina
CID-11
Início
Adult
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1849407
EuropePMC
Wikidata

📋 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