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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

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Congenital Heart Defects Awareness Week is Feb. 7-14, 2015
Part of American Heart Month

Valentine's Day isn't the only reason to care about hearts during February. Join the Kentucky Birth Surveillance Registry to raise awareness of congenital heart defects in February. Educational materials and resources for colleagues, policy makers, families and others are available year-round on the CDC National Center on Birth Defects and Developmental Disabilities website. Additional information about congenital heart defects is available on the Kentucky Newborn Screening website.

Five Things to Know About Congenital Heart Defects:

  1. Congenital heart defects are the most common type of birth defect. In the United States, about 40,000 infants are born with a heart defect each year.
  2. Some heart defects can be detected before birth, at birth or after a baby leaves the hospital. Some heart defects are recognized at birth when a baby has bluish-tinted nails or lips or troubled breathing. Also, some heart defects potentially can be detected in babies soon after birth using pulse oximetry screening. Other heart defects might have no signs at birth and are not found until later in life, during childhood or even adulthood.
  3. Congenital heart defects can affect be costly to everyone. In the United States, hospital costs for people with heart defects exceed $1 billion a year.
  4. People with congenital heart defects are living longer. As medical care and treatment advance, infants with heart defects are living longer and healthier lives. Many now live into adulthood. About 1 million adults in the United States live with a congenital heart defect.
  5. Some congenital heart defects can be prevented. The cause of most congenital heart defects is unknown. Some babies have heart defects because of changes in their genes or chromosomes, or because of a mix of genes and other risk factors. Studies indicate that women who are obese, have diabetes or smoke during pregnancy increase the chances their babies will be born with a heart defect.

For more information, view the flyer in English or Spanish.

Information on Specific Congenital Heart Defects

True Stories:


Research Updates:

Diabetes and Congenital Heart Defects

  • A study found that women with diabetes before pregnancy are about 4 times more likely to have a pregnancy affected by a congenital heart defect (CHD) compared to women without diabetes.
  • About 8 percent of CHDs each year are due to diabetes that is not well controlled in pregnancy. That amounts to about 2,670 babies each year whose CHD is a result of their mothers’ diabetes.
  • Read the study’s abstract here or learn more about the study here.

Citation: Simeone RM, Devine OJ, Marcinkevage JA, et al. Diabetes and congenital heart defects: a systematic review, meta-analysis, and modeling project.  Am J Prev Med 2014 x(x):xxx-xxx.

Long-Term Outcomes in Children with Congenital Heart Disease

This study found that, compared to children without CHD, children with CHD are:

  • 3 times more likely to report worse health in the last year
  • 3 times more likely to have missed more than 10 days of school or day care
  • more likely to have difficulty crawling, walking or running or to need special equipment for these activities
  • more likely to have other illnesses or conditions like asthma, ear infections, ADD or ADHD, learning disabilities or intellectual disabilities

Read the study abstract or learn more about the study.

Citation: Razzaghi H, Oster M, Reefhuis J. Long term outcomes in children with congenital heart disease: National Health Interview Survey.  J Peds 2014 166(1):119-124.

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 2/4/2015
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