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Síndrome rim coloboma
ORPHA:1475CID-10 · Q60.4CID-11 · LA13.7YOMIM 120330DOENÇA RARA

A Síndrome do Coloboma Renal (SCR) é uma doença genética que se caracteriza por problemas no desenvolvimento do nervo óptico e por malformação e desenvolvimento insuficiente dos rins.

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Introdução

O que você precisa saber de cara

📋

A Síndrome do Coloboma Renal (SCR) é uma doença genética que se caracteriza por problemas no desenvolvimento do nervo óptico e por malformação e desenvolvimento insuficiente dos rins.

Publicações científicas
104 artigos
Último publicado: 2026 Apr

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
180
pacientes catalogados
Início
Childhood
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q60.4
🇧🇷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
Você se identifica com essa condição?
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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

👁️
Olhos
14 sintomas
🫘
Rins
12 sintomas
🦴
Ossos e articulações
5 sintomas
👂
Ouvidos
2 sintomas
🧠
Neurológico
2 sintomas
🧬
Pele e cabelo
2 sintomas

+ 13 sintomas em outras categorias

Características mais comuns

100%prev.
HP:0003577
Frequência: 4/4
100%prev.
Coloboma do disco óptico
Ocasional (29-5%)
100%prev.
Doença renal crônica
Frequência: 4/4
100%prev.
Acuidade visual reduzida
Frequência: 4/4
100%prev.
Concentração elevada de creatinina circulante
Obrigatório (100%)
90%prev.
Displasia do nervo óptico
Muito frequente (99-80%)
50sintomas
Muito frequente (7)
Frequente (13)
Ocasional (17)
Sem dados (13)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 50 características clínicas mais associadas, ordenadas por frequência.

HP:0003577
Frequência: 4/4100%
Coloboma do disco ópticoOptic disc coloboma
Ocasional (29-5%)100%
Doença renal crônicaChronic kidney disease
Frequência: 4/4100%
Acuidade visual reduzidaReduced visual acuity
Frequência: 4/4100%
Concentração elevada de creatinina circulanteElevated circulating creatinine concentration
Obrigatório (100%)100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico104PubMed
Últimos 10 anos43publicações
Pico202110 papers
Linha do tempo
2026Hoje · 2026📈 2021Ano de pico🧪 2025Primeiro 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 dominant.

PAX2Paired box protein Pax-2Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Transcription factor that may have a role in kidney cell differentiation (PubMed:24676634). Has a critical role in the development of the urogenital tract, the eyes, and the CNS

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (3)
Formation of the ureteric budFormation of the nephric ductFormation of intermediate mesoderm
MECANISMO DE DOENÇA

Papillorenal syndrome

An autosomal dominant disorder characterized by both ocular and renal anomalies, but may also include vesicoureteral reflux, high frequency hearing loss, central nervous system anomalies, and/or genital anomalies. Eye anomalies in this disorder consist of a wide and sometimes excavated dysplastic optic disk with the emergence of the retinal vessels from the periphery of the disk, designated optic nerve coloboma or 'morning glory' anomaly. Associated findings may include a small corneal diameter, retinal coloboma, scleral staphyloma, optic nerve cyst, microphthalmia, and pigmentary macular dysplasia. The kidneys are small and abnormally formed (renal hypodysplasia), and have fewer than the normal number of glomeruli, which are enlarged (oligomeganephronia). These ocular and renal anomalies result in decreased visual acuity and retinal detachment, as well as hypertension, proteinuria, and renal insufficiency that frequently progresses to end-stage renal disease.

EXPRESSÃO TECIDUAL(Tecido-específico)
Rim - Medula
58.0 TPM
Rim - Córtex
52.8 TPM
Fallopian Tube
3.5 TPM
Cerebelo
2.5 TPM
Cérebro - Hemisfério cerebelar
1.8 TPM
OUTRAS DOENÇAS (4)
renal coloboma syndromefocal segmental glomerulosclerosis 7familial idiopathic steroid-resistant nephrotic syndromerenal hypoplasia, bilateral
HGNC:8616UniProt:Q02962

Variantes genéticas (ClinVar)

523 variantes patogênicas registradas no ClinVar.

🧬 PAX2: NM_000278.5(PAX2):c.178G>T (p.Val60Phe) ()
🧬 PAX2: NM_000278.5(PAX2):c.616+16G>A ()
🧬 PAX2: NM_000278.5(PAX2):c.420G>A (p.Arg140=) ()
🧬 PAX2: NM_000278.5(PAX2):c.51C>T (p.His17=) ()
🧬 PAX2: NM_000278.5(PAX2):c.1019C>T (p.Pro340Leu) ()
Ver todas no ClinVar

Classificação de variantes (ClinVar)

Distribuição de 426 variantes classificadas pelo ClinVar.

213
213
VUS (50.0%)
Benigna (50.0%)
VARIANTES MAIS SIGNIFICATIVAS
PAX2: NM_000278.5(PAX2):c.1019C>T (p.Pro340Leu) [Uncertain significance]
PAX2: NM_000278.5(PAX2):c.359C>T (p.Ala120Val) [Uncertain significance]
PAX2: NM_000278.5(PAX2):c.169C>A (p.Gln57Lys) [Uncertain significance]
PAX2: NM_000278.5(PAX2):c.959C>A (p.Pro320His) [Uncertain significance]
PAX2: NM_000278.5(PAX2):c.832G>C (p.Asp278His) [Uncertain significance]

Vias biológicas (Reactome)

3 vias biológicas associadas aos genes desta condição.

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 rim coloboma

🗺️

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

🟢 Recrutando agora

1 pesquisa recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

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Publicações mais relevantes

Timeline de publicações
45 papers (10 anos)
#1

Epigenetic, Genetic, and Functional Germline Alterations of PAX Genes in Human Pathology: A Comprehensive Update.

Current issues in molecular biology2026 Feb 23

Paired box (PAX) genes encode a family of nine transcription factors that function as master regulators of embryogenesis, organogenesis, and lineage specification. Their tightly regulated spatial and temporal expression is essential for the development of multiple organ systems, including the central nervous system, eyes, kidneys, immune system, musculoskeletal system, and endocrine organs. Germline mutations of PAX genes result in a broad and often pleiotropic spectrum of human disease, reflecting the developmental programs governed by each family member. Pathogenic variants in PAX genes underlie diverse congenital disorders such as aniridia (PAX6), renal coloboma syndrome (PAX2), otofaciocervical syndrome with immunodeficiency (PAX1), Waardenburg syndrome (PAX3), maturity-onset diabetes of the young (PAX4), and tooth agenesis (PAX9). These conditions frequently demonstrate variable expressivity, incomplete penetrance, and overlapping phenotypes, which make it challenging to be clinically recognized. Beyond embryogenesis and embryologic development, emerging evidence indicates that several PAX proteins remain active in postnatal tissue maintenance, adult stem cell regulation, immune function, and regenerative responses (particularly PAX7 in skeletal muscle satellite cells and PAX5 in B-cell homeostasis), further expanding their clinical relevance. This review provides a synopsis of the major, clinically relevant, germline PAX gene mutations, emphasizing genotype-phenotype correlations, developmental mechanisms, and disease classification across the organ systems. By integrating molecular genetics with human pathology, we highlight the diagnostic implications of PAX genes as central determinants of congenital disease and provide a framework for understanding how alterations in the developmental transcriptional networks translate into human pathology.

#2

Expanded Phenotype of PAX2-Related Papillorenal Syndrome: A Case Featuring FSGS, Atypical Retinopathy, Cerebellar Hypoplasia, and ADHD.

Clinical case reports2026 Feb

Papillorenal syndrome (PAPRS), or renal coloboma syndrome, is a rare autosomal dominant disorder caused by PAX2 mutations. It classically manifests with renal hypodysplasia and optic nerve anomalies. However, recent literature suggests an expanding phenotypic spectrum. We report a 7-year-8-month-old boy born to consanguineous parents, presenting with stage 4 chronic kidney disease (CKD), nephrotic-range proteinuria, visual impairment, and ADHD. Renal biopsy revealed focal segmental glomerulosclerosis (FSGS), and ocular examination showed bilateral peripheral scalloped chorioretinal atrophy without optic nerve colobomas. Genetic testing confirmed a pathogenic heterozygous PAX2 frameshift mutation (c.69_70insG; p.Val26fs28*), establishing the diagnosis of PAPRS. This case illustrates an expanded phenotype of PAX2-related PAPRS, including FSGS, atypical retinal degeneration, cerebellar hypoplasia, and ADHD. Recognition of such atypical presentations is vital for early diagnosis and multidisciplinary management, especially in resource-limited settings where classic features may be absent.

#3

Genotype of PAX2-related disorders correlates with kidney and ocular manifestations.

European journal of human genetics : EJHG2025 Apr

PAX2-related disorders encompass renal coloboma syndrome (RCS) and hereditary focal segmental glomerulosclerosis (FSGS) type 7. We retrospectively analyzed 27 Korean patients with PAX2 pathogenic variants detected between 2004 and 2022 and conducted a literature review of 328 cases, including 301 previously reported. In our cohort, 19 had RCS, 4 had FSGS, and 4 had isolated congenital anomalies of the kidneys and urinary tract. Patients were classified by variant type into predicted loss of function (pLoF) and non-pLoF variant groups, and by variant location into paired domain and other sites group. pLoF variants were predominantly associated with RCS, observed in 82% of patients in both our data (18 of 22, P = 0.017) and the literature (140 of 171, P < 0.001). Kidney failure developed in 52% of Korean patients at a median age of 14.5 years, with no difference in kidney survival between variant types. However, the literature review indicated faster progression to kidney failure in patients with pLoF variants (11.0 vs. 24.0 years; pLoF, n = 138 vs. non-pLoF, n = 71; P = 0.002), with no significant difference by variant location. Ocular manifestations were more common, had earlier onset, and were more severe in the pLoF variants group in our cohort (P = 0.038). The literature confirmed a higher prevalence of ocular involvement in patients with pLoF variants (pLoF, n = 175 vs. non-pLoF, n = 88; P < 0.001) and in those with paired domain variants (P = 0.01). pLoF variants in PAX2 were associated with worse kidney and ocular outcomes. These findings support genotype-phenotype correlations, contributing to tailored management in patients with PAX2-related disorders.

#4

'No causative variants found': an unusual presentation of PAX2-related disorder not detected on rapid whole exome sequencing testing.

BMJ case reports2025 Jan 21

Paired box 2 (PAX2)-related disorder, also known as renal coloboma syndrome, is a variably penetrant autosomal dominant condition, associated with renal and ophthalmological abnormalities. We report a child with PAX2-related disorder who presented atypically with acute ataxia on a background of stage 3 chronic kidney disease. Extensive biochemical, radiological and gene agnostic rapid trio exome sequencing was non-diagnostic. Identification of bilateral optic disc colobomas in the proband and his father raised the suspicion of an inherited PAX2-related disorder. No causative variants were identified on a focused review of the filtered genomic data. Given the strong suspicion of an inherited monogenic disorder, whole genome trio sequencing was requested. Analysis assuming incomplete penetrance identified a paternally inherited PAX2 microdeletion encompassing exon 4. This case adds to evidence of a broader PAX2-associated phenotype. It highlights the importance of a clinical genetics and mainstream interface when navigating and interpreting genetic testing.

#5

C3 Glomerulonephritis in a Child with Renal Coloboma Syndrome.

Indian journal of pediatrics2025 Nov

Publicações recentes

Ver todas no PubMed

📚 EuropePMC46 artigos no totalmostrando 43

2026

Epigenetic, Genetic, and Functional Germline Alterations of PAX Genes in Human Pathology: A Comprehensive Update.

Current issues in molecular biology
2026

Expanded Phenotype of PAX2-Related Papillorenal Syndrome: A Case Featuring FSGS, Atypical Retinopathy, Cerebellar Hypoplasia, and ADHD.

Clinical case reports
2025

Presentation of Patients With Congenital Anomalies of the Kidney and Urinary Tract and PAX2 Loss-of-Function Variants and Implications for Clinical Management.

Kidney international reports
2025

C3 Glomerulonephritis in a Child with Renal Coloboma Syndrome.

Indian journal of pediatrics
2025

Ocular clues to a renal diagnosis: classic imaging in renal coloboma syndrome.

Journal of nephrology
2025

Choroidal neovascularization complicating papillorenal (renal coloboma) syndrome.

Journal francais d'ophtalmologie
2025

Variable Phenotypic Expression of PAX2 Variants in Two Lithuanian Families with Kidney Disease.

Medicina (Kaunas, Lithuania)
2025

Clinical spectrum, genetics and management insights of PAX2-related disorder in nine children.

European journal of medical research
2025

Genotype of PAX2-related disorders correlates with kidney and ocular manifestations.

European journal of human genetics : EJHG
2025

'No causative variants found': an unusual presentation of PAX2-related disorder not detected on rapid whole exome sequencing testing.

BMJ case reports
2024

Frameshift Mutation in PAX2 Related to Focal Segmental Glomerular Sclerosis: A Case Report and Literature Review.

Molecular genetics &amp; genomic medicine
2024

Renal coloboma syndrome/dominant optic atrophy with severe retinal atrophy and de novo digenic mutations in PAX2 and OPA1.

Pediatric nephrology (Berlin, Germany)
2024

Familial focal segmental glomerulosclerosis with Alport-like glomerular basement changes caused by paired box protein 2 gene variant.

CEN case reports
2023

PAX2 Gene Mutation in Pediatric Renal Disorders-A Narrative Review.

International journal of molecular sciences
2023

Renal Coloboma Syndrome-An Autosomal Dominant Genetic Disorder.

The Indian journal of radiology &amp; imaging
2023

PAX2/Renal Coloboma Syndrome Expresses Extreme Intrafamilial Phenotypic Variability.

Nephron
2023

A case of renal coloboma syndrome.

Journal of nephrology
2021

PAX2 Mutation-Related Renal Hypodysplasia: Review of the Literature and Three Case Reports.

Frontiers in pediatrics
2022

Ocular phenotype in a patient with PAX2 gene mutation-associated papillorenal syndrome.

Ophthalmic genetics
2021

Phenotypic spectrum and genetics of PAX2-related disorder in the Chinese cohort.

BMC medical genomics
2021

Resolving severe oligohydramnios as an early prenatal presentation of renal coloboma syndrome-A report of two generations.

Clinical case reports
2021

Ultra-rare renal diseases diagnosed with whole-exome sequencing: Utility in diagnosis and management.

BMC medical genomics
2021

[A family of renal coloboma syndrome].

[Zhonghua yan ke za zhi] Chinese journal of ophthalmology
2021

Minor dysmorphic features in a patient with papillorenal syndrome: A Case Report.

JPMA. The Journal of the Pakistan Medical Association
2021

Identification of candidate PAX2-regulated genes implicated in human kidney development.

Scientific reports
2021

PAX2 variant associated with bilateral kidney agenesis and broad intrafamilial disease variability.

Clinical kidney journal
2020

PAX2 Mutation-Related Oligomeganephronia in a Young Adult Patient.

Case reports in nephrology and dialysis
2021

Bilateral Morning Glory Anomaly With Optic Nerve Multiple Cysts.

Journal of neuro-ophthalmology : the official journal of the North American Neuro-Ophthalmology Society
2021

Renal coloboma syndrome with epilepsy.

The Korean journal of internal medicine
2020

Whole genome sequence analysis identifies a PAX2 mutation to establish a correct diagnosis for a syndromic form of hyperuricemia.

American journal of medical genetics. Part A
2020

Clinical and genetic variability of PAX2-related disorder in the Japanese population.

Journal of human genetics
2020

A novel truncating PAX2 mutation in a boy with renal coloboma syndrome with focal segmental glomerulosclerosis causing rapid progression to end-stage kidney disease.

CEN case reports
2019

Diverse phenotypes in children with PAX2-related disorder.

Molecular genetics &amp; genomic medicine
2019

Dominant PAX2 mutations may cause steroid-resistant nephrotic syndrome and FSGS in children.

Pediatric nephrology (Berlin, Germany)
2018

New PAX2 heterozygous mutation in a child with chronic kidney disease: a case report and review of the literature.

BMC nephrology
2018

Detection of copy number variations by pair analysis using next-generation sequencing data in inherited kidney diseases.

Clinical and experimental nephrology
2017

Three New PAX2 Gene Mutations in Patients with Papillorenal Syndrome.

Neuro-ophthalmology (Aeolus Press)
2018

[Infrequent mutation in renal-coloboma syndrome: case report and review].

Archivos argentinos de pediatria
2020

SEVERE CASE OF RENAL COLOBOMA SYNDROME IN LONG-TERM FOLLOW-UP.

Retinal cases &amp; brief reports
2017

PAX2 is dispensable for in vitro nephron formation from human induced pluripotent stem cells.

Scientific reports
2017

Comprehensive First-Line Magnetic Resonance Imaging in Hypertension: Experience From a Single-Center Tertiary Referral Clinic.

Journal of clinical hypertension (Greenwich, Conn.)
2016

Diverse Renal Phenotypes Observed in a Single Family with a Genetic Mutation in Paired Box Protein 2.

Case reports in nephrology and dialysis
2015

Association of PAX2 and Other Gene Mutations with the Clinical Manifestations of Renal Coloboma Syndrome.

PloS one
Ver todos os 46 no EuropePMC

Associações

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Comunidades

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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. Epigenetic, Genetic, and Functional Germline Alterations of PAX Genes in Human Pathology: A Comprehensive Update.
    Current issues in molecular biology· 2026· PMID 41751498mais citado
  2. Expanded Phenotype of PAX2-Related Papillorenal Syndrome: A Case Featuring FSGS, Atypical Retinopathy, Cerebellar Hypoplasia, and ADHD.
    Clinical case reports· 2026· PMID 41694625mais citado
  3. Genotype of PAX2-related disorders correlates with kidney and ocular manifestations.
    European journal of human genetics : EJHG· 2025· PMID 39994403mais citado
  4. 'No causative variants found': an unusual presentation of PAX2-related disorder not detected on rapid whole exome sequencing testing.
    BMJ case reports· 2025· PMID 39842896mais citado
  5. C3 Glomerulonephritis in a Child with Renal Coloboma Syndrome.
    Indian journal of pediatrics· 2025· PMID 41102447mais citado
  6. A Case Report of Renal Coloboma Syndrome.
    Kidney Med· 2026· PMID 41971231recente
  7. Presentation of Patients With Congenital Anomalies of the Kidney and Urinary Tract and PAX2 Loss-of-Function Variants and Implications for Clinical Management.
    Kidney Int Rep· 2025· PMID 41278353recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:1475(Orphanet)
  2. OMIM OMIM:120330(OMIM)
  3. MONDO:0007352(MONDO)
  4. GARD:4106(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q7133011(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 rim coloboma
Compêndio · Raras BR

Síndrome rim coloboma

ORPHA:1475 · MONDO:0007352
Prevalência
<1 / 1 000 000
Casos
180 casos conhecidos
Herança
Autosomal dominant
CID-10
Q60.4 · Hipoplasia renal bilateral
CID-11
Início
Childhood
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1852759
EuropePMC
Wikidata
Papers 10a
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