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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

Understanding genetic factors and genetic disorders is important in learning more about preventing birth defects, developmental disabilities and other unique conditions among children.

Studies have shown that genes are involved in health and disease. Some genetic changes have been linked with an increased risk of having a child with a birth defect or developmental disability. Therefore, collecting your family health history can be important for your child's health. Knowing if your family has a history of a genetic condition can help identify the risk for birth defects and aid in early detection and treatment of genetic conditions.

Tools and Resources

For more information visit: CDC website  Kentucky logo designating an external link

Tools to collect Family Health History:

My Family Health Portrait  Kentucky logo designating an external link
Does It Run In the Family? Online Tool  Kentucky logo designating an external link
Family Health History  Kentucky logo designating an external link

(information and photo source- CDC website)

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 7/25/2016