Raras
Buscar doenças, sintomas, genes...
Síndrome Omenn
ORPHA:39041CID-10 · D81.8CID-11 · 4A01.10OMIM 603554DOENÇA RARA

Uma condição inflamatória caracterizada por vermelhidão intensa e generalizada da pele, descamação, perda de cabelo, diarreia crônica, dificuldade de crescer e ganhar peso, inchaço dos gânglios linfáticos e aumento do fígado e do baço, associada à Imunodeficiência Combinada Grave (SCID).

Mantido por Agente Raras·Colaborar como especialista →

Introdução

O que você precisa saber de cara

📋

Uma condição inflamatória caracterizada por vermelhidão intensa e generalizada da pele, descamação, perda de cabelo, diarreia crônica, dificuldade de crescer e ganhar peso, inchaço dos gânglios linfáticos e aumento do fígado e do baço, associada à Imunodeficiência Combinada Grave (SCID).

Pesquisas ativas
3 ensaios
7 total registrados no ClinicalTrials.gov
Publicações científicas
292 artigos
Último publicado: 2026 Mar 28

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
25
pacientes catalogados
Início
Infancy
+ neonatal
🏥
SUS: Sem cobertura SUSScore: 0%
CID-10: D81.8
Você se identifica com essa condição?
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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
16 sintomas
🧬
Pele e cabelo
13 sintomas
🫃
Digestivo
7 sintomas
🛡️
Imunológico
6 sintomas
👁️
Olhos
3 sintomas
📏
Crescimento
3 sintomas

+ 43 sintomas em outras categorias

Características mais comuns

100%prev.
Proporção de células T CD4+ naive diminuída
Obrigatório (100%)
100%prev.
HP:0003577
Frequência: 2/2
100%prev.
Início neonatal
Obrigatório (100%)
100%prev.
Início na infância
Obrigatório (100%)
100%prev.
Anomalia do desenvolvimento do córtex cerebral
Obrigatório (100%)
100%prev.
Atraso no desenvolvimento da coordenação motora grossa
Obrigatório (100%)
97sintomas
Muito frequente (72)
Frequente (9)
Ocasional (7)
Muito raro (3)
Sem dados (6)

Os sintomas variam de pessoa para pessoa. Abaixo estão as 97 características clínicas mais associadas, ordenadas por frequência.

Proporção de células T CD4+ naive diminuídaDecreased naive CD4+ T cell proportion
Obrigatório (100%)100%
HP:0003577
Frequência: 2/2100%
Início neonatalNeonatal onset
Obrigatório (100%)100%
Início na infânciaInfantile onset
Obrigatório (100%)100%
Anomalia do desenvolvimento do córtex cerebralHP:0020116
Obrigatório (100%)100%

Linha do tempo da pesquisa

Publicações por ano — veja quando o interesse científico cresceu
Anos de pesquisa1desde 2026
Total histórico292PubMed
Últimos 10 anos135publicações
Pico202118 papers
Linha do tempo
2026Hoje · 2026🧪 2008Primeiro ensaio clínico📈 2021Ano 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

10 genes identificados com associação a esta condição. Padrão de herança: Autosomal 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
RAG2V(D)J recombination-activating protein 2Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Core component of the RAG complex, a multiprotein complex that mediates the DNA cleavage phase during V(D)J recombination. V(D)J recombination assembles a diverse repertoire of immunoglobulin and T-cell receptor genes in developing B and T-lymphocytes through rearrangement of different V (variable), in some cases D (diversity), and J (joining) gene segments. DNA cleavage by the RAG complex occurs in 2 steps: a first nick is introduced in the top strand immediately upstream of the heptamer, gener

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (2)
Interleukin-7 signalingMAPK6/MAPK4 signaling
MECANISMO DE DOENÇA

Combined cellular and humoral immune defects with granulomas

Immunodeficiency disease with granulomas in the skin, mucous membranes, and internal organs. Other characteristics include hypogammaglobulinemia, a diminished number of T and B-cells, and sparse thymic tissue on ultrasonography.

EXPRESSÃO TECIDUAL(Baixa expressão)
Tireoide
1.5 TPM
Testículo
1.1 TPM
Pituitária
0.1 TPM
Ovário
0.0 TPM
Rim - Medula
0.0 TPM
OUTRAS DOENÇAS (4)
severe combined immunodeficiency, autosomal recessive, T cell-negative, B cell-negative, NK cell-positiveOmenn syndromecombined immunodeficiency with skin granulomasrecombinase activating gene 2 deficiency
HGNC:9832UniProt:P55895
CHD7ATP-dependent chromatin remodeler CHD7Disease-causing germline mutation(s) inAltamente restrito
FUNÇÃO

ATP-dependent chromatin-remodeling factor, slides nucleosomes along DNA; nucleosome sliding requires ATP (PubMed:28533432). Probable transcription regulator. May be involved in the in 45S precursor rRNA production

LOCALIZAÇÃO

NucleusNucleus, nucleolus

MECANISMO DE DOENÇA

CHARGE syndrome

Common cause of congenital anomalies. Is characterized by a non-random pattern of congenital anomalies including choanal atresia and malformations of the heart, inner ear, and retina.

OUTRAS DOENÇAS (6)
hypogonadotropic hypogonadism 5 with or without anosmiaCHD7-related CHARGE syndromeKallmann syndromehypogonadotropic hypogonadism
HGNC:20626UniProt:Q9P2D1
RAG1V(D)J recombination-activating protein 1Disease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalytic component of the RAG complex, a multiprotein complex that mediates the DNA cleavage phase during V(D)J recombination. V(D)J recombination assembles a diverse repertoire of immunoglobulin and T-cell receptor genes in developing B and T-lymphocytes through rearrangement of different V (variable), in some cases D (diversity), and J (joining) gene segments. In the RAG complex, RAG1 mediates the DNA-binding to the conserved recombination signal sequences (RSS) and catalyzes the DNA cleavage

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (2)
Interleukin-7 signalingMAPK6/MAPK4 signaling
MECANISMO DE DOENÇA

Combined cellular and humoral immune defects with granulomas

Immunodeficiency disease with granulomas in the skin, mucous membranes, and internal organs. Other characteristics include hypogammaglobulinemia, a diminished number of T and B-cells, and sparse thymic tissue on ultrasonography.

EXPRESSÃO TECIDUAL(Baixa expressão)
Baço
1.9 TPM
Tireoide
1.4 TPM
Glândula adrenal
0.9 TPM
Testículo
0.8 TPM
Glândula salivar
0.6 TPM
OUTRAS DOENÇAS (5)
Omenn syndromesevere combined immunodeficiency, autosomal recessive, T cell-negative, B cell-negative, NK cell-positivecombined immunodeficiency with skin granulomascombined immunodeficiency due to partial RAG1 deficiency
HGNC:9831UniProt:P15918
IL7RInterleukin-7 receptor subunit alphaDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Receptor for interleukin-7. Also acts as a receptor for thymic stromal lymphopoietin (TSLP)

LOCALIZAÇÃO

Cell membraneSecreted

VIAS BIOLÓGICAS (1)
Clathrin-mediated endocytosis
MECANISMO DE DOENÇA

Immunodeficiency 104, severe combined

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)
Pulmão
89.7 TPM
Intestino delgado
57.7 TPM
Baço
51.2 TPM
Fibroblastos
32.7 TPM
Sangue
22.3 TPM
OUTRAS DOENÇAS (3)
immunodeficiency 104Omenn syndromeT-B+ severe combined immunodeficiency due to IL-7Ralpha deficiency
HGNC:6024UniProt:P16871
ADAAdenosine deaminaseDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Catalyzes the hydrolytic deamination of adenosine and 2-deoxyadenosine (PubMed:16670267, PubMed:23193172, PubMed:26166670, PubMed:8452534, PubMed:9361033). Plays an important role in purine metabolism and in adenosine homeostasis. Modulates signaling by extracellular adenosine, and so contributes indirectly to cellular signaling events. Acts as a positive regulator of T-cell coactivation, by binding DPP4 (PubMed:20959412). Its interaction with DPP4 regulates lymphocyte-epithelial cell adhesion (

LOCALIZAÇÃO

Cell membraneCell junctionCytoplasmic vesicle lumenCytoplasmLysosome

VIAS BIOLÓGICAS (2)
Purine salvageRibavirin ADME
MECANISMO DE DOENÇA

Severe combined immunodeficiency autosomal recessive T-cell-negative/B-cell-negative/NK-cell-negative due to adenosine deaminase deficiency

An autosomal recessive disorder accounting for about 50% of non-X-linked SCIDs. SCID refers to 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 with SCID present in infancy with 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. ADA deficiency has been diagnosed in chronically ill teenagers and adults (late or adult onset). Population and newborn screening programs have also identified several healthy individuals with normal immunity who have partial ADA deficiency.

OUTRAS DOENÇAS (2)
severe combined immunodeficiency, autosomal recessive, T cell-negative, B cell-negative, NK cell-negative, due to adenosine deaminase deficiencyOmenn syndrome
HGNC:186UniProt:P00813
RMRPDisease-causing germline mutation(s) inDesconhecido
LOCALIZAÇÃO

OUTRAS DOENÇAS (5)
metaphyseal dysplasia without hypotrichosisanauxetic dysplasia 1cartilage-hair hypoplasiaOmenn syndrome
HGNC:10031
DCLRE1CProtein artemisDisease-causing germline mutation(s) inTolerante
FUNÇÃO

Nuclease involved in DNA non-homologous end joining (NHEJ); required for double-strand break repair and V(D)J recombination (PubMed:11336668, PubMed:11955432, PubMed:12055248, PubMed:14744996, PubMed:15071507, PubMed:15574326, PubMed:15936993). Required for V(D)J recombination, the process by which exons encoding the antigen-binding domains of immunoglobulins and T-cell receptor proteins are assembled from individual V, (D), and J gene segments (PubMed:11336668, PubMed:11955432, PubMed:14744996)

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (1)
Nonhomologous End-Joining (NHEJ)
MECANISMO DE DOENÇA

Severe combined immunodeficiency autosomal recessive T-cell-negative/B-cell-negative/NK-cell-positive with sensitivity to ionizing radiation

A form of severe combined immunodeficiency, 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 with 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. Individuals affected by RS-SCID show defects in the DNA repair machinery necessary for coding joint formation and the completion of V(D)J recombination. A subset of cells from such patients show increased radiosensitivity.

EXPRESSÃO TECIDUAL(Ubíquo)
Linfócitos
9.0 TPM
Baço
5.2 TPM
Nervo tibial
5.1 TPM
Vagina
4.8 TPM
Cervix Ectocervix
4.5 TPM
OUTRAS DOENÇAS (2)
Omenn syndromesevere combined immunodeficiency due to DCLRE1C deficiency
HGNC:17642UniProt:Q96SD1
PSMB10Proteasome subunit beta type-10Disease-causing germline mutation(s) inTolerante
FUNÇÃO

The proteasome is a multicatalytic proteinase complex which is characterized by its ability to cleave peptides with Arg, Phe, Tyr, Leu, and Glu adjacent to the leaving group at neutral or slightly basic pH. The proteasome has an ATP-dependent proteolytic activity. This subunit is involved in antigen processing to generate class I binding peptides

LOCALIZAÇÃO

CytoplasmNucleus

VIAS BIOLÓGICAS (4)
Antigen processing: Ub, ATP-independent proteasomal degradationCross-presentation of soluble exogenous antigens (endosomes)ER-Phagosome pathwayProteasome assembly
MECANISMO DE DOENÇA

Proteasome-associated autoinflammatory syndrome 5

An autosomal recessive, autoinflammatory disorder characterized by recurrent, polymorphic disseminated cutaneous rash with annular lesions, non-specific lymphocytic infiltration in the skin, fever, failure to thrive, and persistent hepatosplenomegaly. Disease onset is in early infancy.

EXPRESSÃO TECIDUAL(Ubíquo)
Linfócitos
302.5 TPM
Baço
186.4 TPM
Sangue
148.5 TPM
Intestino delgado
126.3 TPM
Pulmão
94.2 TPM
OUTRAS DOENÇAS (3)
immunodeficiency 121 with autoinflammationproteasome-associated autoinflammatory syndrome 5Omenn syndrome
HGNC:9538UniProt:P40306
LIG4DNA ligase 4Disease-causing germline mutation(s) inTolerante
FUNÇÃO

DNA ligase involved in DNA non-homologous end joining (NHEJ); required for double-strand break (DSB) repair and V(D)J recombination (PubMed:12517771, PubMed:17290226, PubMed:23523427, PubMed:29980672, PubMed:33586762, PubMed:8798671, PubMed:9242410, PubMed:9809069). Catalyzes the NHEJ ligation step of the broken DNA during DSB repair by resealing the DNA breaks after the gap filling is completed (PubMed:12517771, PubMed:17290226, PubMed:9242410, PubMed:9809069). Joins single-strand breaks in a d

LOCALIZAÇÃO

Nucleus

VIAS BIOLÓGICAS (2)
Nonhomologous End-Joining (NHEJ)2-LTR circle formation
MECANISMO DE DOENÇA

LIG4 syndrome

Characterized by immunodeficiency and developmental and growth delay. Patients display unusual facial features, microcephaly, growth and/or developmental delay, pancytopenia, and various skin abnormalities.

EXPRESSÃO TECIDUAL(Ubíquo)
Pituitária
17.9 TPM
Cérebro - Hemisfério cerebelar
17.6 TPM
Cerebelo
16.5 TPM
Linfócitos
15.0 TPM
Testículo
13.6 TPM
OUTRAS DOENÇAS (4)
DNA ligase IV deficiencyDubowitz syndromeOmenn syndromeplasma cell myeloma
HGNC:6601UniProt:P49917

Variantes genéticas (ClinVar)

555 variantes patogênicas registradas no ClinVar.

🧬 LIG4: NM_206937.2(LIG4):c.1510T>C (p.Ser504Pro) ()
🧬 LIG4: NM_206937.2(LIG4):c.2148_2151del (p.Lys717fs) ()
🧬 LIG4: NM_206937.2(LIG4):c.1500del (p.His501fs) ()
🧬 LIG4: NM_206937.2(LIG4):c.506dup (p.Ser170fs) ()
🧬 LIG4: GRCh38/hg38 13q31.3-34(chr13:89779269-114338054)x1 ()
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

Pipeline de tratamentos
Pipeline regulatório — de medicamentos já aprovados a drogas em pesquisa exploratória.
2Fase 21
·Pré-clínico3
Medicamentos catalogadosEnsaios clínicos· 0 medicamentos · 4 ensaios
Carregando informações de tratamento...

Onde tratar no SUS

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

🇧🇷 Atendimento SUS — Síndrome Omenn

🗺️

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

2 pesquisas recrutando participantes. Converse com seu médico sobre a possibilidade de participar.

Outros ensaios clínicos

7 ensaios clínicos encontrados, 3 ativos.

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

Timeline de publicações
136 papers (10 anos)
#1

Outcomes following matched sibling donor transplantation for severe combined immunodeficiency: a report from the PIDTC.

Blood advances2026 Feb 10

The Primary Immune Deficiency Treatment Consortium performed a retrospective analysis of 133 patients with severe combined immunodeficiency (SCID) receiving matched sibling donor (MSD) hematopoietic cell transplantation (HCT) between 1980 and 2023 at 30 North American institutions. In this largest cohort of MSD outcomes in patients with SCID to date, we examined the impact of conditioning regimen and graft-versus-host disease (GVHD) prophylaxis on survival and immune recovery. Outcomes after MSD HCT for SCID were excellent. Patients without an active infection or failure to thrive (FTT) at the time of HCT had 5-year overall survival superior to those with infection or FTT. Acute and chronic GVHD outcomes were independent of GVHD prophylaxis, conditioning regimen, SCID type, or presence of maternal engraftment. Patients without active infection at the time of HCT had superior chronic GVHD-free event-free survival vs those with infection. T-cell reconstitution at 6 months was less likely achieved with use of GVHD prophylaxis or serotherapy, and in patients with leaky SCID or Omenn syndrome. At 6 months, 1 year, and 2-5 years, T-cell reconstitution was less likely with ADA, DCLRE1C, or RAG genotype. B-cell reconstitution at 1 year and 2-5 years was negatively affected by development of grade 2 to 4 or 3 to 4 acute GVHD. Conditioning did not affect T- or B-cell reconstitution. Our data suggest omitting conditioning and GVHD prophylaxis for patients with typical SCID did not negatively affect 5-year outcomes after MSD HCT, but the data are insufficient to recommend this approach for best long-term outcomes. This trial was registered at www.clinicaltrials.gov as #NCT01186913 and #NCT01346150.

#2

Case Report: Infant with vaccine-associated paralytic poliomyelitis unveils global disparities in care for inborn errors of immunity.

Frontiers in immunology2026

Severe combined immunodeficiency (SCID) is a life-threatening inborn error of immunity (IEI) that is potentially curable when diagnosed early but is associated with high morbidity and mortality when recognition is delayed. In settings without universal newborn screening (NBS), and where vaccination programs rely heavily on live vaccines, affected infants are at risk of preventable complications. We report an Indonesian girl, the first child of non-consanguineous parents, who at the age of three months, developed a generalized maculopapular rash, followed by febrile encephalopathy with acute flaccid paralysis and hepatomegaly at four months of age. Investigations revealed pan-hypogammaglobulinemia (IgG <1.09 g/L, IgA <0.05 g/L, IgM 0.06 g/L) and marked eosinophilia (7554 cells/uL). On transfer to Singapore, detailed immunophenotyping revealed T cell lymphocytopenia with the vast majority being 99.3% CD45RO+ on CD3+CD4+ cells, and absent B cells. The diagnosis of SCID with Omenn syndrome was made, with genetic analysis revealing compound heterozygosity for pathogenic RAG1 variants. As the child received oral polio vaccine (OPV) at day 8 of life, vaccine-associated paralytic poliomyelitis (VAPP) was suspected, which was confirmed with positive enterovirus PCR in the cerebral spinal fluid; Sabin-like poliovirus serotype 1 was isolated from stool. Hematopoietic stem cell transplantation (HSCT) was discussed but the family opted for supportive palliative care. The child died of a febrile illness at 8 months of age. Although IEI was initially suspected, the use of limited flow cytometric diagnostic evaluation delayed the definitive diagnosis in the child. The lack of NBS for SCID, together with the continued usage of OPV in the routine childhood vaccination program in most lower to middle income countries is the perfect storm for VAPP in children born with IEIs in these settings. This case highlights that 1) there is an urgent need to strengthen diagnostic capabilities in resource-limited settings, 2) the transition from OPV to inactivated polio vaccine (IPV) is a public health priority, and 3) there are significant barriers to the implementation of SCID NBS in Southeast Asia. Addressing these systemic gaps is critical to improve survival outcomes for children with severe but treatable IEIs.

#3

Neonatal erythroderma and immunodysplasia: Overlap of cartilage-hair hypoplasia and Omenn syndrome.

European journal of medical genetics2026 Mar

Cartilage hair hypoplasia (CHH) syndrome (OMIM #250250) is a rare autosomal recessive metaphyseal dysplasia, characterized by disproportionate short stature, hypotrichosis and variable extra-skeletal manifestations, including immunodeficiency, anemia, intestinal diseases, and predisposition to malignancies. CHH results from homozygous or compound heterozygous mutations in the RMRP gene on chromosome 9p13, which encodes an untranslated RNA component of mitochondrial RNA-processing endoribonuclease. RMRP pathogenic variants can also lead to Omenn Syndrome (OS) (OMIM #603554), a systemic inflammatory condition displaying neonatal erythroderma and immunodeficiency. This report highlights the genotypic and phenotypic overlap between CHH and OS, by presenting a newborn with skeletal dysplasia, immunodeficiency and neonatal onset erythroderma, carrying the homozygous NR_003051:n.35C > A variant in the RMRP gene. The phenotypic spectrum of X-linked severe combined immunodeficiency (X-SCID) ranges from typical X-SCID (early-onset disease in males that is fatal if not treated with hematopoietic stem cell transplantation [HSCT] or gene therapy) to atypical X-SCID (later-onset disease comprising phenotypes caused by variable immunodeficiency, immune dysregulation, and/or autoimmunity). Typical X-SCID. Prior to universal newborn screening (NBS) for SCID most males with typical X-SCID came to medical attention between ages three and six months because of recurrent infections, persistent infections, and infections with opportunistic organisms. With universal NBS for SCID, the common presentation for typical X-SCID is now an asymptomatic, healthy-appearing male infant. Atypical X-SCID, which usually is not detected by NBS, can manifest in the first years of life or later with one of the following: recurrent upper and lower respiratory tract infections with bronchiectasis; Omenn syndrome, a clinical phenotype caused by immune dysregulation; X-SCID combined immunodeficiency (often with recurrent infections, warts, and dermatitis); immune dysregulation and autoimmunity; or Epstein-Barr virus-related lymphoproliferative complications. The diagnosis of typical and atypical X-SCID is established in a male proband with suggestive findings and a hemizygous pathogenic variant in IL2RG identified by molecular genetic testing. Treatment of manifestations: Typical X-SCID. Newborns with an abnormal NBS require immediate subspecialty immunology evaluation at a center with expertise in the diagnosis of SCID and its genetic causes, and in SCID treatment protocols, including HSCT or gene therapy. While clinical practices and protocols can vary depending on the center, treatment goals include ensuring the safety of the infant/child, prophylaxis for infections, and preemptive HSCT to establish a functional immune system prior to the development of symptoms. Atypical X-SCID. Treatment depends on the degree of infectious complications and the presence of immune dysregulation and/or autoimmunity, and requires subspecialty immunologic care to assist in the diagnosis and choice of antimicrobial and immune-suppressive therapies. Surveillance: After successful HSCT, routine monitoring of affected males every six to 12 months regarding lineage-specific donor cell engraftment; growth, immune, and lung function; and any gastrointestinal and/or dermatologic issues. If HSCT involved conditioning chemotherapy, long-term monitoring of vital organ function and neurodevelopmental progress is also warranted. Agents/circumstances to avoid: To ensure the safety of affected individuals of all ages pending definitive treatment to achieve immunocompetence, parents and other care providers need to assure that the following are avoided: breast-feeding and breast milk (pending clarification of maternal CMV status); exposure to young children, sick persons, or individuals with cold sores; crowded enclosed spaces; live viral vaccines for the affected individual as well as household contacts; transfusion of non-irradiated blood products; areas of construction or soil manipulation. Evaluation of relatives at risk: When the IL2RG pathogenic variant causing X-SCID in the family is known, prenatal testing of at-risk male fetuses may be performed to help prepare for optimal management of an affected infant at birth. If prenatal testing has not been performed, an at-risk newborn male should immediately be placed in a safe environment and tested for the familial IL2RG pathogenic variant to allow earliest possible diagnosis and treatment. X-SCID is inherited in an X-linked manner. The chance that a female who is heterozygous (i.e., a carrier) for the familial IL2RG pathogenic variant will transmit the variant in each pregnancy is 50%: males who inherit the pathogenic variant will be affected; females who inherit the pathogenic variant will be carriers and will be clinically asymptomatic. Affected males transmit the IL2RG pathogenic variant to all of their daughters and none of their sons. Once the IL2RG pathogenic variant has been identified in an affected family member, prenatal testing for a pregnancy at increased risk and preimplantation genetic testing are possible.

#4

Multiomics dissection of human RAG deficiency reveals distinctive patterns of immune dysregulation but a common inflammatory signature.

Science immunology2025 Jan 10

Human recombination-activating gene (RAG) deficiency can manifest with distinct clinical and immunological phenotypes. By applying a multiomics approach to a large group of RAG-mutated patients, we aimed at characterizing the immunopathology associated with each phenotype. Although defective T and B cell development is common to all phenotypes, patients with hypomorphic RAG variants can generate T and B cells with signatures of immune dysregulation and produce autoantibodies to a broad range of self-antigens, including type I interferons. T helper 2 (TH2) cell skewing and a prominent inflammatory signature characterize Omenn syndrome, whereas more hypomorphic forms of RAG deficiency are associated with a type 1 immune profile both in blood and tissues. We used cellular indexing of transcriptomes and epitopes by sequencing (CITE-seq) analysis to define the cell lineage-specific contribution to the immunopathology of the distinct RAG phenotypes. These insights may help improve the diagnosis and clinical management of the various forms of the disease.

#5

Double-hit RAG2 mutation presenting with hyper-immunoglobulin E and preserved T cells diagnostic challenge: a case report.

Journal of medical case reports2025 Nov 05

This case represents a 2-month old female infant with a rare and challenging case of Omenn syndrome that was the result of a compound heterozygous mutation in recombination-activating gene 2, an occurrence infrequently documented in the literature. The presentation was challenging as the patient complained of recurrent infections and generalized rash. Immunological workup demonstrated preserved T cells and extremely high immunoglobulin E levels. This case highlights the significance of considering leaky severe combined immunodeficiency in the differential diagnosis of early life erythroderma and recurrent infections, despite the absence of typical severe combined immunodeficiency findings. We report the case of a 2-month-old Palestinian Arab female infant, born to nonconsanguineous parents, with a positive family history of immunodeficiency, who presented with persistent high-grade fever, diffuse erythrodermic rash, recurrent lower respiratory tract infections, and failure to thrive. Physical examination revealed generalized lymphadenopathy and hepatosplenomegaly. Initial laboratory investigations showed eosinophilia and markedly elevated serum immunoglobulin E levels. Immunological workup demonstrated profound B-cell lymphopenia, preserved natural killer cell counts, and a cluster of differentiation 4/cluster of differentiation 8 T-cell imbalance. Chest radiography revealed absence of a thymic shadow. Whole exome sequencing identified compound heterozygous mutations in the recombination-activating gene 2, confirming the diagnosis of Omenn syndrome. The patient received aggressive antimicrobial therapy and supportive immunologic care. Despite optimal medical management, she succumbed to infection-related complications at 7 months of age, prior to undergoing hematopoietic stem cell transplantation. This case underscores the diagnostic and therapeutic challenges in managing Omenn Syndrome, particularly in settings where routine newborn screening for severe combined immunodeficiency is not available. Early recognition and genetic diagnosis are vital to initiate life-saving interventions such as hematopoietic stem cell transplantation. Increased awareness among clinicians regarding atypical presentations of primary immunodeficiency can lead to earlier referrals, improved outcomes, and reduction in diagnostic delays.

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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. Outcomes following matched sibling donor transplantation for severe combined immunodeficiency: a report from the PIDTC.
    Blood advances· 2026· PMID 41289158mais citado
  2. Case Report: Infant with vaccine-associated paralytic poliomyelitis unveils global disparities in care for inborn errors of immunity.
    Frontiers in immunology· 2026· PMID 41727494mais citado
  3. Neonatal erythroderma and immunodysplasia: Overlap of cartilage-hair hypoplasia and Omenn syndrome.
    European journal of medical genetics· 2026· PMID 41616907mais citado
  4. Multiomics dissection of human RAG deficiency reveals distinctive patterns of immune dysregulation but a common inflammatory signature.
    Science immunology· 2025· PMID 39792639mais citado
  5. Double-hit RAG2 mutation presenting with hyper-immunoglobulin E and preserved T cells diagnostic challenge: a case report.
    Journal of medical case reports· 2025· PMID 41194140mais citado
  6. An update on inborn errors of V(D)J recombination.
    Physiology (Bethesda)· 2026· PMID 41902554recente
  7. X-Linked Severe Combined Immunodeficiency.
    · 1993· PMID 20301584recente

Bases de dados e fontes oficiais

Identificadores e referências canônicas usadas para montar este verbete.

  1. ORPHA:39041(Orphanet)
  2. OMIM OMIM:603554(OMIM)
  3. MONDO:0011338(MONDO)
  4. GARD:8198(GARD (NIH))
  5. Variantes catalogadas(ClinVar)
  6. Busca completa no PubMed(PubMed)
  7. Q2214419(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 Omenn
Compêndio · Raras BR

Síndrome Omenn

ORPHA:39041 · MONDO:0011338
Prevalência
<1 / 1 000 000
Casos
25 casos conhecidos
Herança
Autosomal recessive
CID-10
D81.8 · Outras deficiências imunitárias combinadas
CID-11
Ensaios
3 ativos
Início
Infancy, Neonatal
Prevalência
0.0 (Worldwide)
MedGen
UMLS
C1801959
EuropePMC
Wikidata
Papers 10a
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