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
October is Spina Bifida Awareness Month
Information and photo source -CDC.gov
Each year in the U.S. about 1,500 babies are born with spina bifida. Spina bifida is a type of neural tube defect (NTD) where the spinal nerves bulge through an opening in the back and is usually apparent at birth.
Spina bifida can happen anywhere along the spine if the neural tube does not close all the way, but usually occurs in the lowest part of the spine. The backbone that protects the spinal cord does not form and close as it should. This often results in damage to the spinal cord and nerves.
Spina bifida might cause physical and intellectual disabilities that range from mild to severe. The severity depends on:
• The size and location of the opening in the spine.
• Whether part of the spinal cord and nerves are affected.
Research has shown that adequate daily intake of folic acid reduces the risk of NTDs. Therefore, if you are pregnant or could get pregnant it is important that you take 400 micrograms (mcg) of folic acid every day (CDC website/folic acid). If you already have had a pregnancy affected by spina bifida, you may need to take a higher dose of folic acid before getting pregnant and during the first few months of pregnancy. Talk to your doctor to discuss what's best for you.
For more information on spina bifida go to CDC website/spina bifida
||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.
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
- 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
- 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
||Why a Birth Surveillance Registry?
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.