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Imunodeficiência combinada grave T-B+ devido a deficiência na cadeia gama
ORPHA:276CID-10 · D81.2CID-11 · 4A01.10OMIM 300400DOENÇA RARA

A imunodeficiência combinada grave (SCID) devido à deficiência da cadeia gama, também chamada SCID-X1, é uma forma de SCID caracterizada por infecções graves e recorrentes, associadas a diarreia e retardo de crescimento.

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Introdução

O que você precisa saber de cara

📋

A imunodeficiência combinada grave (SCID) devido à deficiência da cadeia gama, também chamada SCID-X1, é uma forma de SCID caracterizada por infecções graves e recorrentes, associadas a diarreia e retardo de crescimento.

Escala de raridade

CLASSIFICAÇÃO ORPHANET · BRASIL 2024
1-9 / 100 000
Ultra-rara
<1/50k
Muito rara
1/20k
Rara
1/10k
Pouco freq.
1/5k
Incomum
1/2k
Prevalência
0.0
Europe
Início
Neonatal
🏥
SUS: Cobertura mínimaScore: 5%
Triagem neonatal (Fase 4)CID-10: D81.2
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Entender a doença

Do básico ao detalhe, leia no seu ritmo

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Sinais e sintomas

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

Partes do corpo afetadas

🩸
Sangue
6 sintomas
🛡️
Imunológico
6 sintomas
🧬
Pele e cabelo
4 sintomas
🫃
Digestivo
3 sintomas
🫁
Pulmão
3 sintomas
📏
Crescimento
1 sintomas

+ 25 sintomas em outras categorias

Características mais comuns

90%prev.
Febre recorrente
Muito frequente (99-80%)
90%prev.
Contagem reduzida de células natural killer
Muito frequente (99-80%)
90%prev.
Proporção diminuída de células T CD4-positivas
Muito frequente (99-80%)
90%prev.
Pneumonia
Muito frequente (99-80%)
90%prev.
Proporção reduzida de células T virgens
Muito frequente (99-80%)
90%prev.
Linfopenia
Muito frequente (99-80%)
48sintomas
Muito frequente (8)
Frequente (15)
Ocasional (9)
Muito raro (5)
Sem dados (11)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 48 características clínicas mais associadas, ordenadas por frequência.

Febre recorrenteRecurrent fever
Muito frequente (99-80%)90%
Contagem reduzida de células natural killerReduced natural killer cell count
Muito frequente (99-80%)90%
Proporção diminuída de células T CD4-positivasDecreased proportion of CD4-positive T cells
Muito frequente (99-80%)90%
Pneumonia
Muito frequente (99-80%)90%
Proporção reduzida de células T virgensReduced proportion of naive T cells
Muito frequente (99-80%)90%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2025
Últimos 10 anos7publicações
Pico20151 papers
Linha do tempo
2025Hoje · 2026
Publicações por ano (últimos 10 anos)

Triagem neonatal (Teste do Pezinho)

👶
Teste: TREC (T-cell Receptor Excision Circles)
Fase 4 do PNTNpending
Incidência no Brasil: 1:50.000

A triagem neonatal permite diagnóstico precoce e início imediato do tratamento.

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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: X-linked recessive.

IL2RGCytokine receptor common subunit gammaDisease-causing germline mutation(s) inDesconhecido
FUNÇÃO

Common subunit for the receptors for a variety of interleukins. Probably in association with IL15RA, involved in the stimulation of neutrophil phagocytosis by IL15 (PubMed:15123770)

LOCALIZAÇÃO

Cell membraneCell surface

VIAS BIOLÓGICAS (9)
RAF/MAP kinase cascadeInterleukin receptor SHC signalingInterleukin-2 signalingInterleukin-4 and Interleukin-13 signalingInterleukin-7 signaling
MECANISMO DE DOENÇA

Severe combined immunodeficiency X-linked T-cell-negative/B-cell-positive/NK-cell-negative

A form of severe combined immunodeficiency (SCID), a genetically and clinically heterogeneous group of rare congenital disorders characterized by impairment of both humoral and cell-mediated immunity, leukopenia, and low or absent antibody levels. Patients present in infancy recurrent, persistent infections by opportunistic organisms. The common characteristic of all types of SCID is absence of T-cell-mediated cellular immunity due to a defect in T-cell development.

EXPRESSÃO TECIDUAL(Ubíquo)
Sangue
410.7 TPM
Linfócitos
347.9 TPM
Baço
165.1 TPM
Intestino delgado
62.0 TPM
Pulmão
48.1 TPM
OUTRAS DOENÇAS (3)
T-B+ severe combined immunodeficiency due to gamma chain deficiencycombined immunodeficiency, X-linkedOmenn syndrome
HGNC:6010UniProt:P31785

Variantes genéticas (ClinVar)

304 variantes patogênicas registradas no ClinVar.

🧬 IL2RG: NM_000206.3(IL2RG):c.115+5G>A ()
🧬 IL2RG: NM_000206.3(IL2RG):c.375C>A (p.Tyr125Ter) ()
🧬 IL2RG: NM_000206.3(IL2RG):c.499del (p.Glu167fs) ()
🧬 IL2RG: NM_000206.3(IL2RG):c.595G>T (p.Glu199Ter) ()
🧬 IL2RG: NM_000206.3(IL2RG):c.709T>C (p.Trp237Arg) ()
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

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Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Imunodeficiência combinada grave T-B+ devido a deficiência na cadeia gama

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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
0 papers (10 anos)
#1

A Novel R140S γc Variant Alters Cellular Distribution, Reduces Surface Expression, and Impairs Cytokine Signaling in Atypical X-SCID.

Journal of clinical immunology2025 Aug 02

The interleukin-2 receptor γ (IL-2Rγ, or γc) is a crucial component of several cytokine receptor complexes. Deficiencies in γc lead to X-linked severe combined immunodeficiency (X-SCID), characterized by recurrent infections due to the absence or dysfunction of T and NK cells, and nonfunctional B cells. Missense variants in the γc extracellular region are linked to atypical X-SCID with normal counts of T, B, and NK cells and less severe symptoms, yet the underlying cellular and molecular mechanisms are not well understood. This study describes a case of atypical X-SCID with a missense variant (c.420 A > T, p.R140S) in the γc extracellular domain, associated with recurrent bacterial, fungal, and viral infections. We found that the R140S variant leads to reduced surface expression and variably affects cytokine receptor signaling. Specifically, STAT5 phosphorylation and proliferation in CD4+ T and CD8+ T cells are impaired in response to IL-7, a cytokine essential for T cell survival, proliferation and function. Notably, γcR140S predominantly localizes to the endoplasmic reticulum, in contrast to WT γc, which is found in acidic compartments. Despite this mislocalization, γcR140S does not trigger unfolded protein responses, and its protein stability and degradation pathways remain unaffected. Nevertheless, cells expressing high levels of γcR140S exhibited a competitive disadvantage in culture compared to those expressing WT γc, resulting in the enrichment of cells expressing lower levels of γcR140S. These findings extend our understanding of how mutations in the extracellular domain of γc can lead to reduced protein expression and influence the pathophysiology of atypical X-SCID.

#2

Partial T cell defects and expanded CD56bright NK cells in an SCID patient carrying hypomorphic mutation in the IL2RG gene.

Journal of leukocyte biology2020 Aug

X-linked severe combined immunodeficiency (X-SCID) caused by full mutation of the IL2RG gene leads to T- B+ NK- phenotype and is usually associated with severe opportunistic infections, diarrhea, and failure to thrive. When IL2RG hypomorphic mutation occurs, diagnosis could be delayed and challenging since only moderate reduction of T and NK cells may be present. Here, we explored phenotypic insights and the impact of the p.R222C hypomorphic mutation (IL2RGR222C ) in distinct cell subsets in an 8-month-old patient with atypical X-SCID. We found reduced CD4+ T cell counts, a decreased frequency of naïve CD4+ and CD8+ T cells, and an expansion of B cells. Ex vivo STAT5 phosphorylation was impaired in CD4+ CD45RO+ T cells, yet compensated by supraphysiological doses of IL-2. Sanger sequencing on purified cell subsets showed a partial reversion of the mutation in total CD3+ cells, specifically in recent thymic emigrants (RTE), effector memory (EM), and CD45RA+ terminally differentiated EM (EMRA) CD4+ T cells. Of note, patient's NK cells had a normal frequency compared to age-matched healthy subjects, but displayed an expansion of CD56bright cells with higher perforin content and cytotoxic potential, associated with accumulation of NK-cell stimulatory cytokines (IL-2, IL-7, IL-15). Overall, this report highlights an alteration in the NK-cell compartment that, together with the high disease-phenotype variability, should be considered in the suspicion of X-SCID with hypomorphic IL2RG mutation.

#3

Alternative Splicing Rescues Loss of Common Gamma Chain Function and Results in IL-21R-like Deficiency.

Journal of clinical immunology2019 Feb

Inborn errors in interleukin 2 receptor, gamma (IL2RG) perturb signaling of the common gamma chain family cytokines and cause severe combined immunodeficiency (SCID). Here, we report two brothers suffering from chronic cryptosporidiosis, severe diarrhea, and cholangitis. Pan T, B, and NK cell numbers were normal, but immunophenotyping revealed defective B cell differentiation. Using whole exome sequencing, we identified a base pair deletion in the first exon of IL2RG predicted to cause a frameshift and premature stop. However, flow cytometry revealed normal surface expression of the IL-2Rγ chain. While IL-2, IL-7, and IL-15 signaling showed only mild defects of STAT5 phosphorylation in response to the respective cytokines, IL-4- and IL-21-induced phosphorylation of STAT3 and STAT6 was markedly reduced. Examination of RNA isoforms detected alternative splicing downstream of IL2RG exon 1 in both patients resulting in resolution of the predicted frameshift and 16 mutated amino acids. In silico modeling suggested that the IL-2Rγ mutation reduces the stabilization of IL-4 and IL-21 cytokine binding by affecting the N-terminal domain of the IL-2Rγ. Thus, our study shows that IL2RG deficiency can be associated with differential signaling defects. Confounding effects of alternative splicing may partially rescue genetic defects and should be considered in patients with inborn errors of immunity.

#4

Preclinical Development of a Lentiviral Vector for Gene Therapy of X-Linked Severe Combined Immunodeficiency.

Molecular therapy. Methods &amp; clinical development2018 Jun 15

X-linked severe combined immunodeficiency (SCID-X1) is caused by mutations in the interleukin-2 receptor γ chain gene (IL2RG), and it is characterized by profound defects in T, B, and natural killer (NK) cell functions. Transplantation of hematopoietic stem/progenitor cells (HSPCs) genetically corrected with early murine leukemia retrovirus (MLV)-derived gammaretroviral vectors showed restoration of T cell immunity in patients, but it resulted in vector-induced insertional oncogenesis. We developed a self-inactivating (SIN) lentiviral vector carrying a codon-optimized human IL2RG cDNA driven by the EF1α short promoter (EFS-IL2RG), and we tested its efficacy and safety in vivo by transplanting transduced Il2rg-deficient Lin- HSPCs in an Il2rg-/-/Rag2-/- mouse model. The study showed restoration of T, B, and NK cell counts in bone marrow and peripheral blood and normalization of thymus and spleen cellularity and architecture. High-definition insertion site analysis defined the EFS-IL2RG genomic integration profile, and it showed no sign of vector-induced clonal selection or skewing in primarily and secondarily transplanted animals. The study enables a phase I/II clinical trial aimed at restoring both T and B cell immunity in SCID-X1 children upon non-myeloablative conditioning.

#5

A novel mutation in the JH4 domain of JAK3 causing severe combined immunodeficiency complicated by vertebral osteomyelitis.

Clinical immunology (Orlando, Fla.)2017 Oct

JAK3 is a tyrosine kinase essential for signaling downstream of the common gamma chain subunit shared by multiple cytokine receptors. JAK3 deficiency results in T-B+NK- severe combined immune deficiency (SCID). We report a patient with SCID due to a novel mutation in the JAK3 JH4 domain. The function of the JH4 domain remains unknown. This is the first report of a missense mutation in the JAK3 JH4 domain, thereby demonstrating the importance of the JH4 domain of JAK3 in host immunity.

Publicações recentes

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Comunidades

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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. A Novel R140S &#x3b3;c Variant Alters Cellular Distribution, Reduces Surface Expression, and Impairs Cytokine Signaling in Atypical X-SCID.
    Journal of clinical immunology· 2025· PMID 40751765mais citado
  2. Partial T cell defects and expanded CD56bright NK cells in an SCID patient carrying hypomorphic mutation in the IL2RG gene.
    Journal of leukocyte biology· 2020· PMID 32392633mais citado
  3. Alternative Splicing Rescues Loss of Common Gamma Chain Function and Results in IL-21R-like Deficiency.
    Journal of clinical immunology· 2019· PMID 30903457mais citado
  4. Preclinical Development of a Lentiviral Vector for Gene Therapy of X-Linked Severe Combined Immunodeficiency.
    Molecular therapy. Methods &amp; clinical development· 2018· PMID 29707600mais citado
  5. A novel mutation in the JH4 domain of JAK3 causing severe combined immunodeficiency complicated by vertebral osteomyelitis.
    Clinical immunology (Orlando, Fla.)· 2017· PMID 28917720mais citado
  6. The prevalence and long-term response to calcium channel blockers in patients with pulmonary arterial hypertension and positive vasoreactivity test - results of multicenter national registry (BNP-PL).
    Orphanet J Rare Dis· 2026· PMID 41742179recente
  7. Factors associated with psycho-behavioral problems among 100 children with phenylketonuria aged 6-18 years.
    Orphanet J Rare Dis· 2025· PMID 40500796recente
  8. Long-term outcome of CblC deficiency complicated with pulmonary hypertension.
    Orphanet J Rare Dis· 2025· PMID 40468431recente
  9. Development of the natural history component of an early economic model for primary sclerosing cholangitis.
    Orphanet J Rare Dis· 2025· PMID 40102907recente
  10. A multi-step approach to overcome challenges in the management of head and neck lymphatic malformations, and response to treatment.
    Orphanet J Rare Dis· 2024· PMID 39044220recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:276(Orphanet)
  2. OMIM OMIM:300400(OMIM)
  3. MONDO:0010315(MONDO)
  4. GARD:5618(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q1423538(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

Imunodeficiência combinada grave T-B+ devido a deficiência na cadeia gama
Compêndio · Raras BR

Imunodeficiência combinada grave T-B+ devido a deficiência na cadeia gama

ORPHA:276 · MONDO:0010315
🇧🇷 Brasil SUS
Triagem
TREC (T-cell Receptor Excision Circles)
PNTN
Fase 4
Incidência BR
1:50.000
Geral
Prevalência
1-9 / 100 000
Herança
X-linked recessive
CID-10
D81.2 · Imunodeficiência combinada grave [SCID] com números baixos ou normais de células B
CID-11
Início
Neonatal
Prevalência
0.0 (Europe)
MedGen
UMLS
C1279481
Wikidata
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