Babies born in New York State may be eligible for screening for additional disorders beyond those mandated by New York State Public Health Law.  These include consented pilot studies offered to families whose babies are born at participating hospitals, as well as testing for conditions available to all babies in the state.

Congenital Cytomegalovirus (cCMV) Infection

Beginning Monday, October 2, 2023 and ending October 2024, all newborn screen samples received by the New York State Newborn Screening (NBS) Program will be screened for one extra condition for free: congenital cytomegalovirus (cCMV) infection. All babies will be tested for cCMV unless parents choose to opt out of having their child’s cCMV screen result reported in their newborn screen record. No extra blood sample is needed for this testing.  An update will be issued when this testing starts.

Additional information on screening for cCMV

Why is it important to screen for cCMV?

CMV is a very common virus.  We predict about one out of every 200 newborns may test positive for cCMV. Some babies who are born with cCMV may develop hearing loss and/or other health problems. Over half of adults in the United States have had CMV and most adults do not know they have the virus because most people show no symptoms. Some people with CMV experience cold-like symptoms such as sore throat, fever, tiredness, and swollen glands. While CMV is often harmless in adults, pregnant people may pass the virus to their unborn babies. People are not routinely tested for CMV, so a person may not know that they contracted the virus during pregnancy. Babies born with cCMV are at risk for symptoms and/or long-term health problems.

Opting out of cCMV results

All babies will be tested for cCMV. Parents can choose to opt out of having their child’s cCMV screen result reported in their newborn screen record.  Opting out means that neither the parent(s) nor the baby’s primary care provider will be contacted even if the result of the screen is positive.  Parents should act quickly if they would like to opt out.  Newborn screen reports are completed 5-7 days after birth for each child. If the NBS Program does not hear from parent(s) before the report is finished for their child, their child’s cCMV result will be included in their newborn screen report. Parents do not need to do anything if they would like their baby‘s cCMV result reported. To opt-out, parents may do any one of the following:

1. Scan the QR code found on the parent brochure. This will bring you to the Newborn Screening Program website and opt-out portal_[1].
   Please note: This portal can only be used to opt out of CMV testing. To request results for your child please call or email the newborn screening program.
2. Remove and fill out the opt out form in the parent brochure, then give it to hospital staff to submit with the newborn screen specimen (this option must be done within 2 days of birth)
3. Email a picture of the completed opt-out form to cmvnbs@health.ny.gov_[2]
4. Call the NYS Newborn Screening Program:  518-473-7552   *Language interpretation available upon request
5. Mail the opt-out form to the NYS Newborn Screening Program:
   • Newborn Screening Program
     David Axelrod Institute
     120 New Scotland Avenue
     Albany, NY 12208

*The New York State Newborn Screening Program received funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Developent to perform this additional testing for cCMV.

Additional Resources

If your child has a positive newborn screen for congenital CMV your specialist may discuss participation in a long-term follow-up program called PROACTIVE NYS. For more information please click here_[3].

• Brochure for parents/families about cCMV screening_[4]
• Fact sheet regarding cCMV screening for healthcare providers_[5]
• Frequently Asked Questions_[6]
• Educational Webinar for Healthcare Providers_[7]
• Educational webinar slides for healthcare providers_[8]
• CDC CMV Fact Sheet_[9]
• CDC CMV Clinical Overview_[10]
• National CMV Foundation _[11]
• New York State Early Intervention Program (EIP)_[12] 
• New York State Early Hearing Detection and Intervention Program (EHID) _[13]
• Congenital CMV Disease Research Clinic & Registry_[14]

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