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Osteopetrose intermediária
ORPHA:210110CID-10 · Q78.2CID-11 · LD24.10OMIM 611497DOENÇA RARA

Qualquer osteopetrose maligna autossômica recessiva em que a causa da doença é uma mutação no gene PLEKHM1.

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Qualquer osteopetrose maligna autossômica recessiva em que a causa da doença é uma mutação no gene PLEKHM1.

Publicações científicas
11 artigos
Último publicado: 2024 May

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
Início
Childhood
🏥
SUS: Cobertura mínimaScore: 15%
CID-10: Q78.2
🇧🇷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

🦴
Ossos e articulações
7 sintomas
👁️
Olhos
3 sintomas
🦷
Dentes
2 sintomas
🩸
Sangue
2 sintomas
🫃
Digestivo
1 sintomas
👂
Ouvidos
1 sintomas

+ 10 sintomas em outras categorias

Características mais comuns

100%prev.
Esclerose cortical da asa ilíaca
Obrigatório (100%)
100%prev.
Osteopetrose
Frequência: 2/2
90%prev.
Anormalidade da densidade mineral óssea
Muito frequente (99-80%)
55%prev.
Osteosclerose da base do crânio
Frequente (79-30%)
55%prev.
Aumento da suscetibilidade a fraturas
Frequente (79-30%)
55%prev.
Aparência em sanduíche dos corpos vertebrais
Frequente (79-30%)
27sintomas
Muito frequente (3)
Frequente (8)
Ocasional (3)
Muito raro (11)
Sem dados (2)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 27 características clínicas mais associadas, ordenadas por frequência.

Esclerose cortical da asa ilíacaCortical sclerosis of the iliac wing
Obrigatório (100%)100%
OsteopetroseOsteopetrosis
Frequência: 2/2100%
Anormalidade da densidade mineral ósseaAbnormality of bone mineral density
Muito frequente (99-80%)90%
Osteosclerose da base do crânioOsteosclerosis of the base of the skull
Frequente (79-30%)55%
Aumento da suscetibilidade a fraturasIncreased susceptibility to fractures
Frequente (79-30%)55%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa2desde 2024
Total histórico11PubMed
Últimos 10 anos3publicações
Pico20201 papers
Linha do tempo
2024Hoje · 2026🧪 2016Primeiro ensaio clínico
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

3 genes identificados com associação a esta condição. Padrão de herança: Autosomal recessive.

PLEKHM1Pleckstrin homology domain-containing family M member 1Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

Acts as a multivalent adapter protein that regulates Rab7-dependent and HOPS complex-dependent fusion events in the endolysosomal system and couples autophagic and the endocytic trafficking pathways. Acts as a dual effector of RAB7A and ARL8B that simultaneously binds these GTPases, bringing about clustering and fusion of late endosomes and lysosomes (PubMed:25498145, PubMed:28325809). Required for late stages of endolysosomal maturation, facilitating both endocytosis-mediated degradation of gro

LOCALIZAÇÃO

Autolysosome membraneEndosome membraneLate endosome membraneLysosome membrane

MECANISMO DE DOENÇA

Osteopetrosis, autosomal recessive 6

A rare genetic disease characterized by abnormally dense bone, due to defective resorption of immature bone. Osteopetrosis occurs in two forms: a severe autosomal recessive form occurring in utero, infancy, or childhood, and a benign autosomal dominant form occurring in adolescence or adulthood. Recessive osteopetrosis commonly manifests in early infancy with macrocephaly, feeding difficulties, evolving blindness and deafness, bone marrow failure, severe anemia, and hepatosplenomegaly. Deafness and blindness are generally thought to represent effects of pressure on nerves.

EXPRESSÃO TECIDUAL(Ubíquo)
Esôfago - Mucosa
41.0 TPM
Cerebelo
25.4 TPM
Cérebro - Hemisfério cerebelar
22.4 TPM
Skin Sun Exposed Lower leg
21.8 TPM
Vagina
21.3 TPM
OUTRAS DOENÇAS (2)
osteopetrosis, autosomal dominant 3autosomal recessive osteopetrosis 6
HGNC:29017UniProt:Q9Y4G2
CLCN7H(+)/Cl(-) exchange transporter 7Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Slowly voltage-gated channel mediating the exchange of chloride ions against protons (PubMed:18449189, PubMed:21527911). Functions as antiporter and contributes to the acidification of the lysosome lumen and may be involved in maintaining lysosomal pH (PubMed:18449189, PubMed:21527911, PubMed:31155284). The CLC channel family contains both chloride channels and proton-coupled anion transporters that exchange chloride or another anion for protons (By similarity). The presence of conserved gating

LOCALIZAÇÃO

Lysosome membrane

VIAS BIOLÓGICAS (1)
Stimuli-sensing channels
MECANISMO DE DOENÇA

Osteopetrosis, autosomal recessive 4

A rare genetic disease characterized by abnormally dense bone, due to defective resorption of immature bone. Osteopetrosis occurs in two forms: a severe autosomal recessive form occurring in utero, infancy, or childhood, and a benign autosomal dominant form occurring in adolescence or adulthood. Recessive osteopetrosis commonly manifests in early infancy with macrocephaly, feeding difficulties, evolving blindness and deafness, bone marrow failure, severe anemia, and hepatosplenomegaly. Deafness and blindness are generally thought to represent effects of pressure on nerves.

VIAS REACTOME (1)
OUTRAS DOENÇAS (5)
autosomal dominant osteopetrosis 2autosomal recessive osteopetrosis 4hypopigmentation, organomegaly, and delayed myelination and developmentautosomal recessive osteopetrosis
HGNC:2025UniProt:P51798
TCIRG1V-type proton ATPase 116 kDa subunit a 3Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Subunit of the V0 complex of vacuolar(H+)-ATPase (V-ATPase), a multisubunit enzyme composed of a peripheral complex (V1) that hydrolyzes ATP and a membrane integral complex (V0) that translocates protons (By similarity). V-ATPase is responsible for acidifying and maintaining the pH of intracellular compartments and in some cell types, is targeted to the plasma membrane, where it is responsible for acidifying the extracellular environment (By similarity). Seems to be directly involved in T-cell a

LOCALIZAÇÃO

Membrane

VIAS BIOLÓGICAS (3)
Insulin receptor recyclingTransferrin endocytosis and recyclingIon channel transport
MECANISMO DE DOENÇA

Osteopetrosis, autosomal recessive 1

A rare genetic disease characterized by abnormally dense bone, due to defective resorption of immature bone. Osteopetrosis occurs in two forms: a severe autosomal recessive form occurring in utero, infancy, or childhood, and a benign autosomal dominant form occurring in adolescence or adulthood. Recessive osteopetrosis commonly manifests in early infancy with macrocephaly, feeding difficulties, evolving blindness and deafness, bone marrow failure, severe anemia, and hepatosplenomegaly. Deafness and blindness are generally thought to represent effects of pressure on nerves.

EXPRESSÃO TECIDUAL(Ubíquo)
Sangue
473.7 TPM
Baço
357.4 TPM
Cervix Endocervix
257.4 TPM
Pulmão
249.1 TPM
Cervix Ectocervix
190.2 TPM
OUTRAS DOENÇAS (5)
autosomal recessive osteopetrosis 1autosomal dominant severe congenital neutropeniadysosteosclerosisautosomal recessive osteopetrosis
HGNC:11647UniProt:Q13488

Variantes genéticas (ClinVar)

507 variantes patogênicas registradas no ClinVar.

🧬 TCIRG1: NM_006019.4(TCIRG1):c.2207G>A (p.Arg736His) ()
🧬 TCIRG1: NM_006019.4(TCIRG1):c.1682delinsTT (p.Gly561fs) ()
🧬 TCIRG1: NM_006019.4(TCIRG1):c.45_46del (p.Phe16fs) ()
🧬 TCIRG1: NM_006019.4(TCIRG1):c.157del (p.Val53fs) ()
🧬 TCIRG1: NM_006019.4(TCIRG1):c.2236+67C>T ()
Ver todas no ClinVar

Diagnóstico

Os sinais que médicos procuram e os exames que confirmam

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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.
2Fase 21
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 — Osteopetrose intermediária

🗺️

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

1 ensaios clínicos encontrados.

Distribuição por fase
Ver todos no ClinicalTrials.gov
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Publicações mais relevantes

Timeline de publicações
3 papers (10 anos)
#1

Allogenic hematopoietic stem cell transplantation in an Iranian patient with osteopetrosis caused by carbonic anhydrase II deficiency: A case report.

Pediatric transplantation2024 May

Osteopetrosis is a group of geneticall heterogeneous disorders resulting from impaired osteoclast function and bone resorption. The identification of specific genetic mutations can yield important prognostic and therapeutic implications. Herein, we present the diagnosis and successful application of hematopoietic stem cell transplantation (HSCT) in a patient with osteopetrosis caused by carbonic anhydrase II deficiency (Intermediate osteopetrosis). Herein, we describe a 2.5-year-old male patient born to consanguineous parents who presented at 8-month-old with hydrocephaly, brain shunt, and developmental delay. Later at 9 months old, he was found to have eye disorder such as nystagmus, fracture of the elbow, abnormal skeletal survey, normal cell blood count (CBC), and severe hypocellularity in the bone marrow. Further evaluation showed renal tubular acidosis type 2. Whole-exome sequencing revealed a pathogenic homozygous variant in intron 2 of the carbonic anhydrase 2 gene (CA2) gene (c.232 + 1 G>T). The diagnosis of intermediate autosomal recessive osteopetrosis was established, and allogenic HSCT from his mother, a full-matched related donor (MRD), was planned. The conditioning regimen included Busulfan, Fludarabine, and Rabbit anti-thymocyte globulin. Cyclosporine and Mycophenolate Mofetil were used for graft-versus-host-disease prophylaxis. He Engrafted on day +13, and 95% chimerism was achieved. He is currently doing well without immunosuppressive therapy, now 12 months post HSCT, with normal calcium level and improving visual quality and FISH analysis revealed complete donor chimerism. HSCT could be a promising curative treatment for intermediate osteopetrosis and can provide long-term survival. Ongoing challenges in various aspects of HSCT remain to be addressed.

#2

Haploidentical haematopoietic stem cell transplantation for malignant infantile osteopetrosis and intermediate osteopetrosis: a retrospective analysis of a single centre.

Orphanet journal of rare diseases2021 Jul 15

To evaluate the clinical efficacy of haploidentical haematopoietic stem cell transplantation (haplo-HSCT) for the treatment of malignant infantile osteopetrosis (MIOP) and intermediate osteopetrosis. Children with MIOP and IOP who underwent haplo-HSCT in Beijing Children's Hospital, Capital Medical University, from January 2010 to May 2018 were retrospectively analysed. Data relating to the clinical manifestations, engraftment, and prognosis of the children were extracted from medical records. Twenty-seven patients, including 18 males and 9 females, with an onset age of 12 (0.04-72) months were enrolled in this study. The median time from diagnosis to transplantation was 4 (1-23) months. All patients received haplo-HSCT with a myeloablative conditioning regimen (including fludarabine, busulfan, and cyclophosphamide). Graft versus host disease (GVHD) prophylaxis was based on anti-human T lymphocyte porcine immunoglobulin/anti-human thymus globulin, methotrexate, and mycophenolate mofetil. The median observation time was 55.2 (0.3-126.2) months. By the end of follow-up, twenty patients survived and seven patients died. The 5 year overall survival rate was 73.9%. Stage I-II acute GVHD was observed in 20 patients, stage III GVHD in 1 patient and no patients had stage IV disease. Chronic GVHD was observed in 11 patients (40.7%) and was controlled by anti-GVHD therapy. Haplo-HSCT was an effective treatment for MIOP and IOP, with a high survival rate and significantly improved clinical symptoms. For patients with a vision impairment before HSCT, the improvement was slow after transplantation. The incidence of GVHD was high but mild and was effectively controlled by appropriate treatment. These data indicated that haplo-HSCT was a feasible treatment for MIOP and IOP.

#3

Adult Osteosclerotic Metaphyseal Dysplasia With Progressive Osteonecrosis of the Jaws and Abnormal Bone Resorption Pattern Due to a LRRK1 Splice Site Mutation.

Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research2020 Jul

Osteosclerotic metaphyseal dysplasia (OSMD) is a rare autosomal recessive sclerosing skeletal dysplasia. We report on a 34-year-old patient with sandwich vertebrae, platyspondyly, osteosclerosis of the tubular bones, pathologic fractures, and anemia. In the third decade, he developed osteonecrosis of the jaws, which was progressive in spite of repeated surgical treatment over a period of 11 years. An iliac crest bone biopsy revealed the presence of hypermineralized cartilage remnants, large multinucleated osteoclasts with abnormal morphology, and inadequate bone resorption typical for osteoclast-rich osteopetrosis. After exclusion of mutations in TCIRG1 and CLCN7 we performed trio-based exome sequencing. The novel homozygous splice-site mutation c.261G>A in the gene LRRK1 was found and co-segregated with the phenotype in the family. cDNA sequencing showed nearly complete skipping of exon 3 leading to a frameshift (p.Ala34Profs*33). Osteoclasts differentiated from the patient's peripheral blood monocytes were extremely large. Instead of resorption pits these cells were only capable of superficial erosion. Phosphorylation of L-plastin at position Ser5 was strongly reduced in patient-derived osteoclasts showing a loss of function of the mutated LRRK1 kinase protein. Our analysis indicates a strong overlap of LRRK1-related OSMD with other forms of intermediate osteopetrosis, but an exceptional abnormality of osteoclast resorption. Like in other osteoclast pathologies an increased risk for progressive osteonecrosis of the jaws should be considered in OSMD, an intermediate form of osteopetrosis. © 2020 The Authors. Journal of Bone and Mineral Research published by American Society for Bone and Mineral Research.

Publicações recentes

Ver todas no PubMed

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. Allogenic hematopoietic stem cell transplantation in an Iranian patient with osteopetrosis caused by carbonic anhydrase II deficiency: A case report.
    Pediatric transplantation· 2024· PMID 38655726mais citado
  2. Haploidentical haematopoietic stem cell transplantation for malignant infantile osteopetrosis and intermediate osteopetrosis: a retrospective analysis of a single centre.
    Orphanet journal of rare diseases· 2021· PMID 34266467mais citado
  3. Adult Osteosclerotic Metaphyseal Dysplasia With Progressive Osteonecrosis of the Jaws and Abnormal Bone Resorption Pattern Due to a LRRK1 Splice Site Mutation.
    Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research· 2020· PMID 32119750mais citado
  4. Exome sequencing identifies CTSK mutations in patients originally diagnosed as intermediate osteopetrosis.
    Bone· 2014· PMID 24269275recente
  5. Clinical considerations for prosthodontic rehabilitation of intermediate form of osteopetrosis: A report of two cases.
    J Oral Biol Craniofac Res· 2012· PMID 25737849recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:210110(Orphanet)
  2. OMIM OMIM:611497(OMIM)
  3. MONDO:0012679(MONDO)
  4. GARD:4156(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q32145072(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

Osteopetrose intermediária
Compêndio · Raras BR

Osteopetrose intermediária

ORPHA:210110 · MONDO:0012679
Prevalência
Unknown
Herança
Autosomal recessive
CID-10
Q78.2 · Osteopetrose
CID-11
Início
Childhood
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C0432261
EuropePMC
Wikidata
Papers 10a
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