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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

July: National Cleft and Craniofacial Awareness and Prevention Month

Each year about 4,400 infants in the United States are born with a cleft lip with or without a cleft palate and about 2.700 infants are born with a cleft palate alone.

Understanding Craniofacial Defects

Craniofacial defects are conditions present at birth that affect the structure and function of a baby’s head and face. Two of the most common craniofacial defects are orofacial clefts, which occur when the lip and mouth do not form properly, and craniosynostosis, which happens when the bones in the baby’s skull fuse too early. Microtia is when the external portion of the ear does not form properly, and anotia occurs when the external portion of the ear is missing. Treatments and services for children with craniofacial defects can vary depending on the severity of the defect. Children with certain craniofacial defects can have a greater risk for physical, learning, developmental, or social challenges, or a mix of these. Craniofacial defects have significant effects on families and the health care system.

Identifying Preventable Causes

Smoking - Women who smoke anytime during the month before they get pregnant through the end of the third month of pregnancy have been shown to be more likely to have a baby with a cleft lip with or without cleft palate

Maternal thyroid disease - Women with thyroid disease or who are treated for thyroid disease while they are pregnant have been shown to be at higher risk of having an infant with the early fusion of the skull bones (craniosynostosis).

Next Steps in Prevention and Research
Looking at the possible roles of other risk factors, such as certain medicines women take while they are pregnant, to prevent craniofacial defects.

Looking at ways to decrease the number of women with uncontrolled diabetes during pregnancy to prevent craniofacial defects.

Evaluating short- and long-term outcomes, non-medical and other costs, access to services, receiving services quickly, use of early intervention and special education services, and quality of life to find ways to help support the health and wellness of affected infants and children.

Additional Resources on Craniofacial Defects

Cleft Palate Foundation

FACES-The National Craniofacial Association

March of Dimes

National Cleft and Craniofacial Awareness and Prevention Month

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 8/18/2015