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Kentucky Birth Surveillance Registry

Kentucky Birth Surveillance Registry
275 E. Main St. HS2W-A
Frankfort, KY 40621

Phone: (502) 564-4830
Toll free: (800) 462-6122
Fax: (502) 564-1510
email

 

June is National Congenital Cytomegalovirus Awareness Month

 CMV

What is Cytomegalovirus?

Cytomegalovirus (CMV) is a common virus that can be contracted through contact with the saliva or urine of children. Toddlers often get CMV infections at preschool. While many people have never heard of it, CMV is a common virus that infects people of all ages. Most CMV infections are silent, which means most people infected with CMV have no signs or symptoms. However, pregnant women who are infected can transmit CMV to their fetuses (see Congenital CMV Infection for more information).

Pregnancy and CMV

Pregnant women are most commonly exposed to CMV through contact with the saliva and urine of young children or through sexual contact. Young children can transmit CMV for months after they first become infected. However, CMV does not spread easily. One in five parents of children who have active CMV infections become infected with CMV over the course of a year.

Congenital CMV Infection Can Be Harmful to Babies

In the United States, more than 5,000 children suffer illness and permanent disabilities caused by congenital CMV infection every year. Children with congenital CMV infection are more likely to have permanent disabilities if they had symptoms of CMV infection at birth. Children impacted by congenital CMV may have developmental disabilities such as hearing and/or vision loss, seizures, small body size at birth and problems with the liver, spleen or lungs.

Reduce Your Risk of CMV

Pregnant women can take steps to reduce their risk of exposure to CMV and so reduce the risk of CMV infection of their fetus. To avoid exposure to children's bodily fluids that might contain CMV:

  • Wash your hands often with soap and water for 15-20 seconds, especially after:
    • changing diapers
    • feeding a young child
    • wiping a young child's nose or drool and
    • handling children's toys
  • Do not share food, drinks or eating utensils used by young children
  • Do not share a toothbrush with a young child
  • Avoid contact with saliva when kissing a child
  • Do not put a child's pacifier in your mouth

Treatment for CMV Infection

For now, there are no licensed treatments for pregnant women who become infected with CMV during pregnancy. Currently licensed treatments that are effective against CMV infection have serious side effects, are not approved for use in pregnant women and have not been shown to prevent CMV infection in the fetus. Scientists are working on CMV vaccines and are looking for other ways to prevent congenital CMV infection.

Visit the CDC website for more information on CMV.

What is the Kentucky Birth Surveillance Registry (KBSR)?

The KBSR is a state-mandated surveillance system designed to provide information on the incidence, prevalence, trends and possible causes of stillbirths, birth defects and disabling conditions. The KBSR collects information on children from birth to age diagnosed with any structural, functional or biochemical abnormality. The system relies primarily on hospital, vital statistics and laboratory reporting. KBSR is administered by the Department for Public Health in the Cabinet for Health and Family Services.
 
The KBSR was developed through a collaboration with the March of Dimes, the Kentucky Hospital Association, KBSR Advisory Committee and advocacy organizations to develop an information collection system. The KBSR collects information on inpatients from acute care hospitals and birthing centers. Reporting is required by medical laboratories licensed in Kentucky. Hospital outpatient reporting is voluntary. The KBSR operates under the authority of KRS 211.651-670.

Confidentiality

The legislation provides strict confidentiality guidelines for the registry. All identifying information is strictly safeguarded and is protected by state law from unauthorized release.

Legislation regarding KBSR  

KAR 902, Chapter 19, # 10 - Kentucky Birth Surveillance Registry

KRS Chapter 211 # 651 - Definitions for KRS 211.651 to 211.670

KRS Chapter 211 # 655 -  Legislative findings and statement of intent

KRS Chapter 211 # 660 - Kentucky birth surveillance registry -- Department's authority to promulgate administrative regulations

KRS Chapter 211 # 665 - Advisory committee -- Duties

KRS Chapter 211 # 670 - Confidentiality of registry reports and records -- Use of information

KBSR Reportable ICD-9 Codes 

The Mission of the KBSR

The mission of the KBSR program is to develop and implement a Birth Surveillance Registry that promotes early and accurate identification of children with birth anomalies and other disabling conditions and facilitate prevention, planning and service delivery in the Commonwealth of Kentucky.

The Objectives of the KBSR

Surveillance

  • Create and maintain a registry of birth defects in Kentucky 
  • Analyze the patterns of birth defects in Kentucky
  • Monitor data for changes in rates through time and geography
  • Respond to requests for aggegrate data
  • Evaluate timeliness and quality of data on birth defects
  • Compile and disseminate surveillance data

Research

  • Facilitate research studies to help identify causes of birth defects

Prevention

  • Support the education of the general public and health professionals about the causes, surveillance, impact and prevention of birth defects

Services

  • Refer identified children and their families to appropriate services
  • Evaluate referral program
Why a Birth Surveillance Registry?

baby in intensive care unit

Birth defects are the leading cause of infant mortality in Kentucky and contribute significantly to childhood morbidity and long-term disability. High lifetime costs to families and society are associated with birth defects. Unique characteristics of Kentucky may lead to an increased prevalence of certain birth defects, including spina bifida and birth defects associated with babies born to mothers with diabetes. High poverty and low educational levels, high teen pregnancy rates and an increasingly diverse population all contribute to increased risks for major birth defects in Kentucky.

Recommendations for a Healthy Pregnancy
  • Take a multivitamin that contains 400 mcg of folic acid every day.
  • Have regular medical checkups.
  • Talk to your health care provider about any medical problems and medicine uses (both over-the-counter and prescription). Ask about avoiding any substances at work or home that might be harmful to a developing baby.
  • Keep vaccinations updated.
  • Avoid eating raw or undercooked meat.
  • Avoid alcohol, tobacco and street drugs.

 

Last Updated 7/28/2015