Congenital herpes simplex virus infection

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33Specialists8Treatment centers

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

Congenital herpes simplex virus (HSV) infection, also known as neonatal herpes simplex, is a serious infectious condition caused by transmission of herpes simplex virus (type 1 or type 2) from mother to infant, most commonly during passage through an infected birth canal, though in utero (transplacental) and postnatal transmission can also occur. The condition is classified under congenital viral infections and can present in three distinct clinical forms: disseminated disease affecting multiple organs including the liver, lungs, and brain; central nervous system (CNS) disease presenting as encephalitis; and disease localized to the skin, eyes, and mouth (SEM disease). Disseminated and CNS forms carry the highest morbidity and mortality. Key symptoms depend on the clinical form but may include vesicular skin lesions, seizures, lethargy, poor feeding, respiratory distress, hepatitis, disseminated intravascular coagulation, and encephalitis. Symptoms typically present within the first few weeks of life, often between days 1 and 21. Without treatment, disseminated disease has a mortality rate exceeding 80%. Ocular involvement can lead to chorioretinitis, cataracts, and microphthalmia, while CNS disease may result in long-term neurodevelopmental impairment including intellectual disability and cerebral palsy. The mainstay of treatment is high-dose intravenous acyclovir, which has significantly improved survival rates and outcomes, particularly when initiated early. Suppressive oral acyclovir therapy following acute treatment has been shown to improve neurodevelopmental outcomes in infants with CNS and SEM disease. Cesarean delivery is recommended for mothers with active genital herpes lesions at the time of delivery to reduce transmission risk. Despite advances in antiviral therapy, long-term neurological sequelae remain common, especially in infants with disseminated or CNS disease.

Also known as:

Clinical phenotype terms— hover any for plain English:

HydranencephalyHP:0002324
Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Apr 2023A Study to Evaluate the Efficacy, Safety, and Immunogenicity of mRNA-1647 Cytomegalovirus (CMV) Vaccine in Allogenic Hematopoietic Cell Transplantation (HCT) Participants.

ModernaTX, Inc. — PHASE2

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for Congenital herpes simplex virus infection.

View clinical trials →

No actively recruiting trials found for Congenital herpes simplex virus infection at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Congenital herpes simplex virus infection community →

Specialists

Showing 25 of 33View all specialists →
PM
Phillip B Smith, M.D.
Specialist
PI on 1 active trial
BS
Bela J Shah
ANAHEIM, CA
Specialist
1 Congenital herpes simplex virus infection publication
PT
Piotr Zbigniew Tyszko
Specialist
1 Congenital herpes simplex virus infection publication
PG
Paweł Goryński
Specialist
1 Congenital herpes simplex virus infection publication
SY
Seiji Yoshimoto
Specialist
1 Congenital herpes simplex virus infection publication
DK
Dai Kataoka
Specialist
1 Congenital herpes simplex virus infection publication
SI
Sota Iwatani
Specialist
1 Congenital herpes simplex virus infection publication
AC
Ankita Choudhary
Specialist
1 Congenital herpes simplex virus infection publication
NJ
Neha C Jangid
Specialist
1 Congenital herpes simplex virus infection publication
KK
Krzysztof Kanecki
Specialist
1 Congenital herpes simplex virus infection publication
KL
Katarzyna Lewtak
Specialist
1 Congenital herpes simplex virus infection publication
MB
Magdalena Bogdan
Specialist
1 Congenital herpes simplex virus infection publication
MR
Michał Rząd
Specialist
1 Congenital herpes simplex virus infection publication
AN
Aneta Nitsch-Osuch
Specialist
1 Congenital herpes simplex virus infection publication
SM
Steven M Holland, M.D.
Specialist
PI on 5 active trials
DD
Dao Wen Wang, Doctor
Specialist
PI on 2 active trials1 Congenital herpes simplex virus infection publication
CP
Chi Hornik, PharmD
DURHAM, NC
Specialist
PI on 1 active trial
KM
Kia Hee Schultz Dungu, MD
Specialist
PI on 2 active trials
RM
Richard Whitley, MD
CENTURY CITY, CA
Specialist
PI on 1 active trial
KP
Kathleen Barnes, PhD
Specialist
PI on 1 active trial
RP
Richard Gallo, MD, PhD
Specialist
PI on 1 active trial
SM
Semih Çakmak, MD
Specialist
PI on 1 active trial
TP
Thomas Bieber, MD, PhD
CLEAR LAKE, IA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 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

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Congenital herpes simplex virus infection.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Congenital herpes simplex virus infection

Disease timeline:

New recruiting trial: A Study to Evaluate the Efficacy, Safety, and Immunogenicity of mRNA-1647 Cytomegalovirus (CMV) Vaccine in Allogenic Hematopoietic Cell Transplantation (HCT) Participants.

A new clinical trial is recruiting patients for Congenital herpes simplex virus infection

New recruiting trial: The Effects of Sirolimus in Patients With Dilated Cardiomyopathy Infected With Kaposi Sarcoma-associated Virus

A new clinical trial is recruiting patients for Congenital herpes simplex virus infection

Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

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 Congenital herpes simplex virus infection

What is Congenital herpes simplex virus infection?

Congenital herpes simplex virus (HSV) infection, also known as neonatal herpes simplex, is a serious infectious condition caused by transmission of herpes simplex virus (type 1 or type 2) from mother to infant, most commonly during passage through an infected birth canal, though in utero (transplacental) and postnatal transmission can also occur. The condition is classified under congenital viral infections and can present in three distinct clinical forms: disseminated disease affecting multiple organs including the liver, lungs, and brain; central nervous system (CNS) disease presenting as en

At what age does Congenital herpes simplex virus infection typically begin?

Typical onset of Congenital herpes simplex virus infection is neonatal. Age of onset can vary across affected individuals.

Which specialists treat Congenital herpes simplex virus infection?

25 specialists and care centers treating Congenital herpes simplex virus infection are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.