Overview
Fetal cytomegalovirus (CMV) syndrome, also known as congenital cytomegalovirus infection, is a condition caused by transmission of cytomegalovirus from a pregnant mother to the developing fetus, most commonly during a primary maternal CMV infection. It is one of the most common congenital infections worldwide and a leading non-genetic cause of sensorineural hearing loss and neurodevelopmental disability in children. The virus can affect multiple organ systems, including the central nervous system, liver, hematopoietic system, eyes, and inner ear. Key clinical features of symptomatic congenital CMV include intrauterine growth restriction, microcephaly, intracranial calcifications (often periventricular), ventriculomegaly, sensorineural hearing loss, chorioretinitis, hepatosplenomegaly, jaundice, thrombocytopenia, and petechiae (a blueberry muffin rash). Neurological involvement can lead to intellectual disability, seizures, and motor deficits. Importantly, approximately 85-90% of infants with congenital CMV infection are asymptomatic at birth, though a proportion of these may develop late-onset sequelae, particularly sensorineural hearing loss, during the first years of life. Treatment for symptomatic congenital CMV infection includes antiviral therapy with valganciclovir (or intravenous ganciclovir), which has been shown to improve hearing and neurodevelopmental outcomes when initiated within the first month of life and continued for six months. Supportive care, including audiological monitoring, ophthalmological follow-up, and developmental assessments, is essential for all affected children. Prevention strategies focus on hygiene education for pregnant women, and research into CMV vaccines is ongoing. Prenatal diagnosis can be made through detection of CMV DNA in amniotic fluid by polymerase chain reaction (PCR), typically performed after 21 weeks of gestation.
Also known as:
Clinical phenotype terms— hover any for plain English:
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
8 eventsHu Bofei — PHASE4
Assistance Publique - Hôpitaux de Paris
National Institute of Allergy and Infectious Diseases (NIAID) — PHASE1
Assistance Publique - Hôpitaux de Paris — PHASE3
University of Massachusetts, Worcester
Hanoi Obstetrics and Gynecology Hospital
University of Alabama at Birmingham — NA
Vitrasert Implant: FDA approved
Treatment of CMV retinitis in patients with acquired immunodeficiency syndrome.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableVitrasert Implant
Treatment of CMV retinitis in patients with acquired immunodeficiency syndrome.
Clinical Trials
View all trials with filters →No actively recruiting trials found for Fetal cytomegalovirus syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesLivtencity
Takeda
Cytomegalovirus Infection
Travel Grants
No travel grants are currently matched to Fetal cytomegalovirus syndrome.
Community
No community posts yet. Be the first to share your experience with Fetal cytomegalovirus syndrome.
Start the conversation →Latest news about Fetal cytomegalovirus syndrome
Disease timeline:
New recruiting trial: Evaluation of Software for Interpreting Virological Results Indicated for the Diagnosis of Cytomegalovirus (CMV) Infection During Pregnancy and Intended for Health Professionals
A new clinical trial is recruiting patients for Fetal cytomegalovirus syndrome
New recruiting trial: A Safety Assessment of Oral Letermovir in Infants With Symptomatic Congenital Cytomegalovirus
A new clinical trial is recruiting patients for Fetal cytomegalovirus syndrome
New recruiting trial: Prenatal Treatment of Congenital Cytomegalovirus Infection With Letermovir Versus Valaciclovir
A new clinical trial is recruiting patients for Fetal cytomegalovirus syndrome
New recruiting trial: Cytomegalovirus (CMV) Transmission and Immune Tracking (TransmIT) Study
A new clinical trial is recruiting patients for Fetal cytomegalovirus syndrome
New recruiting trial: Congenital CYtoMEgalovirus Infection in VIEtnam (CYMEVIE)
A new clinical trial is recruiting patients for Fetal cytomegalovirus syndrome
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 Fetal cytomegalovirus syndrome
What is Fetal cytomegalovirus syndrome?
Fetal cytomegalovirus (CMV) syndrome, also known as congenital cytomegalovirus infection, is a condition caused by transmission of cytomegalovirus from a pregnant mother to the developing fetus, most commonly during a primary maternal CMV infection. It is one of the most common congenital infections worldwide and a leading non-genetic cause of sensorineural hearing loss and neurodevelopmental disability in children. The virus can affect multiple organ systems, including the central nervous system, liver, hematopoietic system, eyes, and inner ear. Key clinical features of symptomatic congenita
At what age does Fetal cytomegalovirus syndrome typically begin?
Typical onset of Fetal cytomegalovirus syndrome is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Fetal cytomegalovirus syndrome?
22 specialists and care centers treating Fetal cytomegalovirus syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Fetal cytomegalovirus syndrome?
2 patient support programs are currently tracked on UniteRare for Fetal cytomegalovirus syndrome. See the treatments and support programs sections for copay assistance, eligibility, and contact details.