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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

October is Down Syndrome Awareness Month

Down syndrome is a genetic disorder caused by a change in chromosomes. Chromosomes carry the genetic information that makes each person unique. Three different types of Down syndrome are known, but the most common type is Trisomy 21, which is characterized by three copies of chromosome 21 in every cell instead of two.

Every year in Kentucky, around 66 babies are born with Down syndrome, a rate of about 11.6 cases per 10,000 live births. Nationally, about 6,000 children are born with Down syndrome per year, a rate of 14.5 cases per 10,000 live births.

Mothers older than 35 are at higher risk of having a baby with Down syndrome. Each person with Down syndrome is unique, and all have different personalities, abilities, and needs.

For more information about Down syndrome, visit:
More Down syndrome information
CDC Down syndrome web page

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.

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 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

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 aggregate 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
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 10/9/2017