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
||March is Trisomy Awareness Month
Trisomy is a birth defect of the chromosomes. Usually, babies have two copies of each chromosome for a total of 46 chromosomes. Babies with trisomy have three copies of one of their chromosomes for a total of 47 chromosomes. The most well-known trisomy conditions are Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome), and Trisomy 13 (Patau syndrome).
In Kentucky, around 11.6 in every 10,000 live births have Down syndrome, 1.5 in every 10,000 live births have Edwards syndrome, and 1 in every 10,000 live births have Patau syndrome. The rates for these conditions in the nation are 14.5 per 10,000 live births, 2.7 per 10,000 live births, and 1.0 per 10,000 live births, respectively. There is no known way to prevent trisomy conditions.
For more information about trisomy, visit:
Down syndrome Data Brief
||What is the Kentucky Birth Surveillance Registry (KBSR)?
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. KBSR collects information on children from birth to age five 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.
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. 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. KBSR operates under the authority of KRS 211.651-670.
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 Reportable Codes
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
||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
- 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 aggregate data
- Evaluate timeliness and quality of data on birth defects
- Compile and disseminate surveillance data
- Facilitate research studies to help identify causes of birth defects
- Support the education of the general public and health professionals about the causes, surveillance, impact and prevention of birth defects
- Refer identified children and their families to appropriate services
- Evaluate referral program
||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.