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Síndrome de predisposição tumoral DICER1
ORPHA:284343CID-10 · C34.8DOENÇA RARA

A variação da linha germinativa patogênica no DICER1 confere uma predisposição autossômica dominante à formação de tumores em múltiplos locais primários, incluindo blastoma pleuropulmonar, cistos pulmonares, neoplasia da glândula tireoide, tumores ovarianos e nefroma cístico. Outras características sindrômicas, como macrocefalia, foram descritas.

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Introdução

O que você precisa saber de cara

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A variação da linha germinativa patogênica no DICER1 confere uma predisposição autossômica dominante à formação de tumores em múltiplos locais primários, incluindo blastoma pleuropulmonar, cistos pulmonares, neoplasia da glândula tireoide, tumores ovarianos e nefroma cístico. Outras características sindrômicas, como macrocefalia, foram descritas.

Publicações científicas
12 artigos
Último publicado: 2025 Apr 30
Medicamentos
1 registrados
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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
0.007
Worldwide
Início
Adolescent
+ adult, childhood
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: C34.8
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Sinais e sintomas

O que aparece no corpo e com que frequência cada sintoma acontece

Partes do corpo afetadas

📏
Crescimento
4 sintomas
💪
Músculos
2 sintomas
🫁
Pulmão
1 sintomas
🫘
Rins
1 sintomas
🦴
Ossos e articulações
1 sintomas
🧠
Neurológico
1 sintomas

+ 7 sintomas em outras categorias

Características mais comuns

Carcinoma papilífero de tireoide
Bócio multinodular eutireoidiano
Blastoma pleuropulmonar
Rabdomiossarcoma
Meduloblastoma
Carcinoma de células renais
18sintomas
Sem dados (18)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 18 características clínicas mais associadas, ordenadas por frequência.

Carcinoma papilífero de tireoidePapillary thyroid carcinoma
Bócio multinodular eutireoidianoEuthyroid multinodular goiter
Blastoma pleuropulmonarPleuropulmonary blastoma
RabdomiossarcomaRhabdomyosarcoma
MeduloblastomaMedulloblastoma

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Total histórico12PubMed
Últimos 10 anos12publicações
Pico20243 papers
Linha do tempo
2025Hoje · 2026🧪 2011Primeiro ensaio clínico📈 2024Ano de pico
Publicações por ano (últimos 10 anos)

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Genética e causas

O que está alterado no DNA e como passa nas famílias

Genes associados

2 genes identificados com associação a esta condição. Padrão de herança: Autosomal dominant.

DICER1Endoribonuclease DicerDisease-causing germline mutation(s) (loss of function) inAltamente restrito
FUNÇÃO

Double-stranded RNA (dsRNA) endoribonuclease playing a central role in short dsRNA-mediated post-transcriptional gene silencing. Cleaves naturally occurring long dsRNAs and short hairpin pre-microRNAs (miRNA) into fragments of twenty-one to twenty-three nucleotides with 3' overhang of two nucleotides, producing respectively short interfering RNAs (siRNA) and mature microRNAs. SiRNAs and miRNAs serve as guide to direct the RNA-induced silencing complex (RISC) to complementary RNAs to degrade them

LOCALIZAÇÃO

CytoplasmCytoplasm, perinuclear region

VIAS BIOLÓGICAS (5)
MicroRNA (miRNA) biogenesisSmall interfering RNA (siRNA) biogenesistRNA-derived small RNA (tsRNA or tRNA-related fragment, tRF) biogenesisM-decay: degradation of maternal mRNAs by maternally stored factorsRegulation of MITF-M-dependent genes involved in apoptosis
MECANISMO DE DOENÇA

Pleuropulmonary blastoma

A rare pediatric intrathoracic neoplasm. The tumor arises from the lung, pleura, or both, and appears to be purely mesenchymal in phenotype. It lacks malignant epithelial elements, a feature that distinguishes it from the classic adult-type pulmonary blastoma. It arises during fetal lung development and is often part of an inherited cancer syndrome. The tumor contain both epithelial and mesenchymal cells. Early in tumorigenesis, cysts form in lung airspaces, and these cysts are lined with benign-appearing epithelium. Mesenchymal cells susceptible to malignant transformation reside within the cyst walls and form a dense layer beneath the epithelial lining. In a subset of patients, overgrowth of the mesenchymal cells produces a sarcoma, a transition that is associated with a poorer prognosis. Some patients have multilocular cystic nephroma, a benign kidney tumor.

EXPRESSÃO TECIDUAL(Ubíquo)
Nervo tibial
46.1 TPM
Tireoide
31.6 TPM
Cervix Endocervix
31.4 TPM
Útero
31.2 TPM
Ovário
30.2 TPM
OUTRAS DOENÇAS (10)
pleuropulmonary blastomaglobal developmental delay - lung cysts - overgrowth - Wilms tumor syndromegoiter, multinodular 1, with or without Sertoli-Leydig cell tumorsrhabdomyosarcoma, embryonal, 2
HGNC:17098UniProt:Q9UPY3
KEAP1Kelch-like ECH-associated protein 1Candidate gene tested inTolerante
FUNÇÃO

Substrate-specific adapter of a BCR (BTB-CUL3-RBX1) E3 ubiquitin ligase complex that regulates the response to oxidative stress by targeting NFE2L2/NRF2 for ubiquitination (PubMed:14585973, PubMed:15379550, PubMed:15572695, PubMed:15601839, PubMed:15983046, PubMed:37339955). KEAP1 acts as a key sensor of oxidative and electrophilic stress: in normal conditions, the BCR(KEAP1) complex mediates ubiquitination and degradation of NFE2L2/NRF2, a transcription factor regulating expression of many cyto

LOCALIZAÇÃO

CytoplasmNucleus

VIAS BIOLÓGICAS (6)
Antigen processing: Ubiquitination & Proteasome degradationNeddylationKEAP1-NFE2L2 pathwayPotential therapeutics for SARSNuclear events mediated by NFE2L2
EXPRESSÃO TECIDUAL(Ubíquo)
Músculo esquelético
88.3 TPM
Cervix Endocervix
54.4 TPM
Fibroblastos
53.0 TPM
Bladder
51.9 TPM
Esôfago - Mucosa
50.8 TPM
OUTRAS DOENÇAS (1)
goiter, multinodular 1, with or without Sertoli-Leydig cell tumors
HGNC:23177UniProt:Q14145

Medicamentos e terapias

LORVOTUZUMAB MERTANSINEPhase 2

Mecanismo: Tubulin inhibitor

Ver mais no OpenTargets

Variantes genéticas (ClinVar)

1,236 variantes patogênicas registradas no ClinVar.

🧬 KEAP1: NC_000019.9:g.(?_10244343)_(10610709_?)del ()
🧬 KEAP1: NC_000019.9:g.(?_10244343)_(11231218_?)del ()
🧬 KEAP1: GRCh37/hg19 19p13.2(chr19:10441330-13077352)x1 ()
🧬 KEAP1: GRCh37/hg19 19p13.3-q13.43(chr19:260912-58956888) ()
🧬 KEAP1: GRCh37/hg19 19p13.3-q13.43(chr19:260912-58956888)x3 ()
Ver todas no ClinVar

Diagnóstico

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Tratamento e manejo

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Pipeline de tratamentos
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2Fase 21
·Pré-clínico2
Medicamentos catalogadosEnsaios clínicos· 1 medicamento · 2 ensaios
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Onde tratar no SUS

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

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Ensaios clínicos abertos e novidades científicas recentes

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Publicações mais relevantes

Timeline de publicações
12 papers (10 anos)
#1

DICER1 in pediatric and adult cancer predisposition populations: Prevalence, phenotypes, and mosaicism.

Genetics in medicine : official journal of the American College of Medical Genetics2025 May

DICER1 tumor predisposition syndrome (DTPS) is a hereditary condition affecting children and young adults. Identification of DICER1 carriers is key for prevention and actionability in families. However, DTPS diagnosis is hindered by its incomplete penetrance and broad phenotypic spectrum. We performed an analysis of DICER1 sequencing data from 92 children and 6108 adults with suspected cancer predisposition syndrome. Clinical and DICER1 somatic data from selected carriers and public data sets were studied. The prevalence of germline DICER1 pathogenic variants was 1:30 in children and 1:3054 in adults. No adult referral phenotype was a known DTPS-associated tumor, although 3 of 5 carriers developed thyroid alterations. We provide functional evidence supporting the pathogenicity of a novel in-frame deletion. A 56-year-old woman with ovarian carcinoma and toxic diffuse thyroid hyperplasia was found to have a postzygotic hotspot missense variant. The prevalence of DICER1 pathogenic variants in cancer predisposition populations was 5 to 6 times that reported in the general population. Pediatric-onset DTPS is well characterized, whereas adult carriers mainly present with thyroid abnormalities in the absence of DICER1-related family history, thus requiring accurate criteria for its identification when in constellation with other tumor types. Postzygotic hotspot missense variants may exist without the expected severe phenotype.

#2

DICER1 Mutational Spectrum in Intracranial CNS-Neoplasias-A Review and a Report from the CNS-InterREST GPOH Study Center.

Cancers2025 Apr 30

DICER1 tumor predisposition syndrome is a genetic condition that increases the risk of developing certain cancer types. While thyroid tumors are the main tumors caused by this condition in adult oncology, children and adolescents with DICER1 germline mutations may suffer from a broader spectrum of tumors, including Sertoli-Leydig cell tumors, pleuropulmonary blastomas, embryonal rhabdomyosarcomas, and pineoblastomas. Although these diseases-many of which are hallmark tumors of DICER1 syndrome and rarely occur sporadically-have been known for several years, the more recent identification of DICER1 mutations in embryonal tumors with multilayered rosettes (ETMR) and DICER1-associated intra- and extracranial sarcomas has expanded the spectrum of tumor types potentially linked to DICER1 syndrome. This review sought to investigate the presence and characteristics of DICER1 mutations in rare CNS tumors and to discuss their potential implications for early recognition of DICER1-related syndromes. To address this, we conducted a comprehensive systematic literature review and analyzed data from our nationwide German database (CNS-InterREST) regarding these entities. When present, DICER1 mutation status, mutation type (somatic vs. germline), and localization within the gene were recorded. Demographic and clinical data-including age at diagnosis and tumor localization-were also evaluated where available. We found that the prevalence of DICER1 mutations in the cohort of ETMR patients included in the CNS-InterREST study was exceedingly low (1/31). The distribution of DICER1 mutations in patients with ETMR or intracranial sarcomas is comparable to that in other previously identified DICER1-mutant tumors. Our literature review demonstrates that within the 248 cases, which include three intracranial DICER1-mutated neoplasias and one reference group, most somatic mutations accumulate in the RNase IIIb domain, while germline mutations are usually evenly distributed throughout the gene. Overall, further research is necessary to unravel the cell-of-origin of the respective tumor types and whether other, hitherto undescribed, genetic factors may contribute to the development of ETMR and DICER1-associated intracranial sarcomas.

#3

Nodular Goiter as the Presenting Symptom of DICER1 Tumor Predisposition Syndrome.

Cureus2025 Jan

In the context of pediatric thyroid disorders, a goiter may serve as an indication of a thyroid tumor in rare instances. In even more unusual scenarios, the cancer can exhibit features of two different categories of carcinoma types. This presentation may suggest a familial tumor syndrome. We present a previously healthy child with an unusual thyroid tumor histology that led to genetic testing and a diagnosis of DICER1 syndrome, an incredibly rare genetic disorder.

#4

A Rare Ovarian Mixed Sex Cord Stromal Tumor in a Patient with Ollier Disease: A Case Report.

Journal of pediatric and adolescent gynecology2024 Dec

This is a case report of a 10-year-old with Ollier disease and an ovarian mass. Ollier disease, a rare disorder characterized by multiple enchondromas resulting in bone deformities, has been occasionally associated with ovarian juvenile granulosa cell tumor. This patient developed signs of precocious puberty and was found to have an ovarian tumor; however, pathology revealed a mixed sex-cord stromal tumor with components of juvenile granulosa and Sertoli-Leydig cell tumor. Tumor genomic testing revealed an IDH1 mutation. Mixed sex-cord stromal tumors of this type, also called "gynandroblastomas," have been associated with DICER1 mutations and DICER1 tumor predisposition syndrome but never with Ollier disease. Our findings expand the known spectrum of syndromic associations with this tumor type, with implications for tumor screening.

#5

Estrogen Receptor Expression in DICER1-related Lesions is Associated With the Presence of Cystic Components.

The American journal of surgical pathology2024 Jun 01

DICER1 tumor predisposition syndrome results from pathogenic variants in DICER1 and is associated with a variety of benign and malignant lesions, typically involving kidney, lung, and female reproductive system. Over 70% of sarcomas in DICER1 tumor predisposition syndrome occur in females. Notably, pediatric cystic nephroma (pCN), a classic DICER1 tumor predisposition syndrome lesion, shows estrogen receptor (ER) expression in stromal cells. There are also renal, hepatic, and pancreatic lesions unassociated with DICER1 tumor predisposition syndrome that have an adult female predominance and are characterized/defined by ER-positive stromal cells. Except for pCN, the expression of ER in DICER1-associated lesions remains uninvestigated. In the present study, ER expression was assessed by immunohistochemistry in 89 cases of DICER1-related lesions and 44 lesions lacking DICER1 pathogenic variants. Expression was seen in stromal cells in pCN and pleuropulmonary blastoma (PPB) types I and Ir, whereas anaplastic sarcoma of kidney and PPB types II and III were typically negative, as were other solid tumors of non-Müllerian origin. ER expression was unrelated to the sex or age of the patient. Expression of ER showed an inverse relationship to preferentially expressed antigen in melanoma (PRAME) expression; as lesions progressed from cystic to solid (pCN/anaplastic sarcoma of kidney, and PPB types I to III), ER expression was lost and (PRAME) expression increased. Thus, in DICER1 tumor predisposition syndrome, there is no evidence that non-Müllerian tumors are hormonally driven and antiestrogen therapy is not predicted to be beneficial. Lesions not associated with DICER1 pathogenic variants also showed ER-positive stromal cells, including cystic pulmonary airway malformations, cystic renal dysplasia, and simple renal cysts in adult kidneys. ER expression in stromal cells is not a feature of DICER1 perturbation but rather is related to the presence of cystic components.

Publicações recentes

Ver todas no PubMed

📚 EuropePMC3 artigos no totalmostrando 12

2025

DICER1 Mutational Spectrum in Intracranial CNS-Neoplasias-A Review and a Report from the CNS-InterREST GPOH Study Center.

Cancers
2025

DICER1 in pediatric and adult cancer predisposition populations: Prevalence, phenotypes, and mosaicism.

Genetics in medicine : official journal of the American College of Medical Genetics
2025

Nodular Goiter as the Presenting Symptom of DICER1 Tumor Predisposition Syndrome.

Cureus
2024

A Rare Ovarian Mixed Sex Cord Stromal Tumor in a Patient with Ollier Disease: A Case Report.

Journal of pediatric and adolescent gynecology
2024

Estrogen Receptor Expression in DICER1-related Lesions is Associated With the Presence of Cystic Components.

The American journal of surgical pathology
2024

Extraskeletal chondroma of the toe in a child with DICER1 tumor predisposition syndrome: support for a dominant negative mechanism.

Virchows Archiv : an international journal of pathology
2023

DICER1 platform domain missense variants inhibit miRNA biogenesis and lead to tumor susceptibility.

NAR cancer
2023

Bilateral Ovarian Sertoli-Leydig Cell Tumors Harboring DICER1 Germline and Distinct Somatic Mutations: Case Report and Literature Review.

Fetal and pediatric pathology
2022

DICER1 tumor predisposition syndrome: an evolving story initiated with the pleuropulmonary blastoma.

Modern pathology : an official journal of the United States and Canadian Academy of Pathology, Inc
2021

Primary Biphasic Hepatic Sarcoma in DICER1 Syndrome.

Pediatric and developmental pathology : the official journal of the Society for Pediatric Pathology and the Paediatric Pathology Society
2020

DICER1-associated metastatic abdominopelvic primitive neuroectodermal tumor with an EWSR1 rearrangement in a 16-yr-old female.

Cold Spring Harbor molecular case studies
2017

DICER1 mutation and tumors associated with a familial tumor predisposition syndrome: practical considerations.

Familial cancer

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Doenças relacionadas

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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. DICER1 in pediatric and adult cancer predisposition populations: Prevalence, phenotypes, and mosaicism.
    Genetics in medicine : official journal of the American College of Medical Genetics· 2025· PMID 39976125mais citado
  2. DICER1 Mutational Spectrum in Intracranial CNS-Neoplasias-A Review and a Report from the CNS-InterREST GPOH Study Center.
    Cancers· 2025· PMID 40361440mais citado
  3. Nodular Goiter as the Presenting Symptom of DICER1 Tumor Predisposition Syndrome.
    Cureus· 2025· PMID 39963649mais citado
  4. A Rare Ovarian Mixed Sex Cord Stromal Tumor in a Patient with Ollier Disease: A Case Report.
    Journal of pediatric and adolescent gynecology· 2024· PMID 39098546mais citado
  5. Estrogen Receptor Expression in DICER1-related Lesions is Associated With the Presence of Cystic Components.
    The American journal of surgical pathology· 2024· PMID 38539053mais citado

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:284343(Orphanet)
  2. MONDO:0100216(MONDO)
  3. GARD:10734(GARD (NIH))
  4. Variantes catalogadas(ClinVar)
  5. Busca completa no PubMed(PubMed)
  6. Q56013966(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 de predisposição tumoral DICER1
Compêndio · Raras BR

Síndrome de predisposição tumoral DICER1

ORPHA:284343 · MONDO:0100216
Prevalência
<1 / 1 000 000
Herança
Autosomal dominant
CID-10
C34.8 · Neoplasia maligna dos brônquios e dos pulmões com lesão invasiva
Medicamentos
1 registrados
Início
Adolescent, Adult, Childhood
Prevalência
0.007 (Worldwide)
MedGen
UMLS
C3839822
EuropePMC
Wikidata
Papers 10a
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