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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

April is Autism Awareness Month

child with blocks

In the United States, autism affects one in every 110 children. National Autism Awareness Month aims to inform and educate the public about this widespread disability and the issues that arise in the autism community. A better-informed public will be more empathetic and supportive toward people with autism.

Facts About ASD*

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. Often, individuals diagnosed with ASD have no physical appearance differences from people without ASD; but people with ASD may communicate, interact, behave and learn differently. The learning, thinking and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives while others need less.

Signs and Symptoms

People with ASD often have problems with social, emotional and communication skills. They may repeat certain behaviors and resist changes in their daily activities. Many people with ASD also have different ways of learning, paying attention or reacting. Signs of ASD begin during early childhood and typically last throughout a person's life.

Children or adults with ASD might:

  • not point at objects to show interest (for example, not point at an airplane flying over)
  • not look at objects when another person points at them
  • avoid eye contact and want to be alone
  • have trouble understanding other people's feelings or talking about their own feelings
  • prefer not to be held or cuddled or cuddle only when they want to
  • appear to be unaware when people talk to them, but respond to other sounds
  • be very interested in people, but not know how to talk, play or relate to them
  • repeat or echo words or phrases said to them or repeat words or phrases in place of normal language
  • have trouble expressing their needs using typical words or motions
  • not play pretend games (for example, not pretend to feed a doll)
  • repeat actions over and over again
  • have trouble adapting when a routine changes
  • have unusual reactions to the way things smell, taste, look, feel or sound
  • lose skills they once had (for example, stop saying words they had used)

Learn more about symptoms

Diagnosis

Diagnosing ASD can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child's behavior and development to make a diagnosis.

ASD sometimes can be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older.*  This delay means children with ASD may not get the early help they need.

Learn more about diagnosis

Treatment

Currently there is no cure for ASD. However, research shows early intervention treatment services can improve a child's development. Early intervention services help children from birth to 3 years old learn important skills. Services can include therapy to help the child talk, walk and interact with others. Therefore, it is important to talk to your child's doctor as soon as possible if you think your child has ASD or other developmental problems.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act provides services for eligible children younger than 3 who are at risk for developmental delays. These services are provided through First Steps, Kentucky's early intervention system. Visit the First Steps website for more information.

References:

* Johnson, C.P. Early Clinical Characteristics of Children with Autism. In: Gupta, V.B. ed: Autistic Spectrum Disorders in Children. New York: Marcel Dekker, Inc., 2004:85-123.

**Lord C, Risi S, DiLavore PS, Shulman C, Thurm A, Pickles A. Autism from 2 to 9 years of age. Arch Gen Psychiatry. 2006 Jun:63(6):694-701. 

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 4/13/2015
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