T-B+ severe combined immunodeficiency due to gamma chain deficiency

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ORPHA:276OMIM:300400D81.2
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4Active trials5Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

T-B+ severe combined immunodeficiency due to gamma chain deficiency, also known as X-linked severe combined immunodeficiency (X-SCID) or SCID-X1, is the most common form of severe combined immunodeficiency. It is caused by mutations in the IL2RG gene, which encodes the common gamma chain (γc), a shared subunit of the receptors for several interleukins (IL-2, IL-4, IL-7, IL-9, IL-15, and IL-21). Because these cytokine signaling pathways are critical for the development and function of the immune system, affected individuals have profoundly impaired immunity characterized by the absence or very low numbers of T cells and natural killer (NK) cells, while B cells are present but functionally deficient (T-B+NK- SCID). Infants with this condition typically present within the first few months of life with recurrent, severe, and often life-threatening infections, including pneumonia, chronic diarrhea, oral thrush (candidiasis), and skin infections. Failure to thrive is common. Without treatment, affected infants are highly susceptible to opportunistic infections caused by bacteria, viruses, fungi, and protozoa, and the condition is usually fatal within the first one to two years of life. Live vaccines, such as BCG and rotavirus, can cause disseminated disease and must be avoided. The standard of care and most effective treatment is hematopoietic stem cell transplantation (HSCT), which can be curative, particularly when performed early in life and ideally from an HLA-matched donor. Newborn screening programs using the T-cell receptor excision circle (TREC) assay have significantly improved early detection and outcomes. Gene therapy has emerged as a promising alternative, especially for patients lacking a suitable donor, and clinical trials have demonstrated long-term immune reconstitution. Enzyme replacement therapy is not applicable to this form of SCID. Supportive care includes infection prophylaxis, immunoglobulin replacement therapy, and protective isolation until definitive treatment is achieved.

Also known as:

Clinical phenotype terms— hover any for plain English:

Decreased CD4+ T cell proportionHP:0032218Abnormal circulating immunoglobulin concentrationHP:0010701Decreased mitogen-induced T-cell proliferationHP:0031381Decreased naive T cell proportionHP:0031397Reduced total natural killer cell countHP:0040218Decreased circulating IgA concentrationHP:0002720Decreased circulating IgG concentrationHP:0004315Recurrent opportunistic infectionsHP:0005390Abnormally low T cell receptor excision circle levelHP:0031545Decreased total T cell countHP:0005403Chronic mucocutaneous candidiasisHP:0002728
Inheritance

X-linked recessive

Carried on the X chromosome; typically affects males more than females

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

9 events
Jan 2026Targeting Real World Usage In Stroke Treatment

Phenox GmbH

TrialRECRUITING
Jun 2024SCID-X1 Gene Therapy Via Intravenous Lentiviral (Ivlv-X1) Injection

Shenzhen Geno-Immune Medical Institute — PHASE1, PHASE2

TrialRECRUITING
Jun 2024Gene Therapy for ADA-SCID Using an Improved Lentiviral Vector (Ivlv-ADA)

Shenzhen Geno-Immune Medical Institute — NA

TrialRECRUITING
Sep 2021Haplocompatible Transplant Using TCRα/β Depletion Followed by CD45RA-Depleted Donor Lymphocyte Infusions for Severe Combined Immunodeficiency (SCID)

St. Jude Children's Research Hospital — PHASE1, PHASE2

TrialACTIVE NOT RECRUITING
Jul 2021Phase I/II Clinical Trial Stem Cell Gene Therapy in RAG1-Deficient SCID

Leiden University Medical Center — NA

TrialRECRUITING
May 2018Autologous Gene Therapy for Artemis-Deficient SCID

University of California, San Francisco — PHASE1, PHASE2

TrialRECRUITING
Feb 2018Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 With Low Dose Targeted Busulfan Conditioning

David Williams — PHASE1

TrialRECRUITING
Mar 2017Strimvelis Registry Study to Follow-up Patients With Adenosine Deaminase Severe Combined Immunodeficiency (ADA-SCID)

Fondazione Telethon

TrialENROLLING BY INVITATION
Apr 2004Genetic Basis of Immunodeficiency

National Heart, Lung, and Blood Institute (NHLBI)

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for T-B+ severe combined immunodeficiency due to gamma chain deficiency.

4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

4 recruitingView all trials with filters →
Phase 11 trial
Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 With Low Dose Targeted Busulfan Conditioning
Phase 1
Actively Recruiting
PI: Sung-Yun Pai, MD (National Institutes of Health (NIH)) · Sites: Los Angeles, California; Atlanta, Georgia +2 more · Age: 05 yrs
Other1 trial
Genetic Basis of Immunodeficiency
Actively Recruiting
PI: Warren J Leonard, M.D. (National Heart, Lung, and Blood Institute (NHLBI)) · Sites: Bethesda, Maryland · Age: 099 yrs

Specialists

5 foundView all specialists →
SM
Stephen Gottschalk, MD
MEMPHIS, TN
Specialist
PI on 4 active trials
EM
Elizabeth M Kang, M.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 11 active trials
LP
Lung-Ji Chang, Ph.D
Shenzhen, Guangdong
Specialist

Rare Disease Specialist

PI on 5 active trials
SM
Sung-Yun Pai, MD
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 2 active trials

Treatment Centers

8 centers
⚗️ Trial Site

Cincinnati Children's Hospital Medical Center

📍 Cincinnati, Ohio

⚗️ Trial Site

Boston Childrens Hospital

📍 Boston, Massachusetts

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

Travel Grants

No travel grants are currently matched to T-B+ severe combined immunodeficiency due to gamma chain deficiency.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about T-B+ severe combined immunodeficiency due to gamma chain deficiency

Disease timeline:

New recruiting trial: Autologous Gene Therapy for Artemis-Deficient SCID

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Genetic Basis of Immunodeficiency

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: SCID-X1 Gene Therapy Via Intravenous Lentiviral (Ivlv-X1) Injection

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Targeting Real World Usage In Stroke Treatment

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Study of Populations at Risk of Developing Chronic Hepatitis Linked to Chronic Enteric Virus Infection in Patients With Primary Immunodeficiency and Secondary Humoral Deficiency

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: The Experience of Screening for SCID

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Phase I/II Clinical Trial Stem Cell Gene Therapy in RAG1-Deficient SCID

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Gene Therapy for ADA-SCID Using an Improved Lentiviral Vector (Ivlv-ADA)

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New recruiting trial: Gene Therapy for Adenosine Deaminase Severe Combined Immune Deficiency Using Peripheral Blood and EFS ADA Vector

A new clinical trial is recruiting patients for T-B+ severe combined immunodeficiency due to gamma chain deficiency

New trial: Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 With Low Dose Targeted Busulfan Conditionin

Phase PHASE1 trial recruiting. autologous CD34+ cell transduced with G2SCID vector

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about T-B+ severe combined immunodeficiency due to gamma chain deficiency

What is T-B+ severe combined immunodeficiency due to gamma chain deficiency?

T-B+ severe combined immunodeficiency due to gamma chain deficiency, also known as X-linked severe combined immunodeficiency (X-SCID) or SCID-X1, is the most common form of severe combined immunodeficiency. It is caused by mutations in the IL2RG gene, which encodes the common gamma chain (γc), a shared subunit of the receptors for several interleukins (IL-2, IL-4, IL-7, IL-9, IL-15, and IL-21). Because these cytokine signaling pathways are critical for the development and function of the immune system, affected individuals have profoundly impaired immunity characterized by the absence or very

How is T-B+ severe combined immunodeficiency due to gamma chain deficiency inherited?

T-B+ severe combined immunodeficiency due to gamma chain deficiency follows a x-linked recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does T-B+ severe combined immunodeficiency due to gamma chain deficiency typically begin?

Typical onset of T-B+ severe combined immunodeficiency due to gamma chain deficiency is infantile. Age of onset can vary across affected individuals.

Are there clinical trials for T-B+ severe combined immunodeficiency due to gamma chain deficiency?

Yes — 4 recruiting clinical trials are currently listed for T-B+ severe combined immunodeficiency due to gamma chain deficiency on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat T-B+ severe combined immunodeficiency due to gamma chain deficiency?

5 specialists and care centers treating T-B+ severe combined immunodeficiency due to gamma chain deficiency are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.