Program Overview
In Kansas, around 1,500 children are born with one or more congenital anomaly (also known as birth defects or congenital malformation) each year. Some of those children need specialized care and intervention shortly after birth and later in life. The Kansas Birth Defects Surveillance Program (KBDS), a part of Kansas Department of Health and Environment (KDHE), oversees the information of these children born with a congenital anomaly living in the state of Kansas.
KBDS is a passive surveillance program and uses information collected to refer families with certain anomalies to other agency programs that offer support services. KBDS follows the National Birth Defects Prevention Network (NBDPN) guidelines for conducting birth defects surveillance. The program also works closely with the CDC and Kansas Environmental Public Health Tracking Network to collaborate on research, resource development, and preventative activities. Continuous quality improvement is a cornerstone of the KBDS program, striving to ensure data quality as well as improving access to critical information and services for families.
Collection of this information is made possible through a collaborative effort between public health agencies, hospitals, health care professionals, and families. Information reported to the program is stored in the Kansas Birth Defects Information System (KBDIS).
For More Information
Contact Us
Paige Leonard
Program Coordinator
Kansas Birth Defects Program
1000 SW Jackson, Suite 220
Topeka, KS 66612
785-296-6134
Paige.Leonard@ks.gov
Forms
Birth Defects Surveillance Program
Who We Are
KBDS is a public health service that is responsible for the collection of information concerning congenital anomalies, stillbirths, and abnormal conditions of newborns and children up to the age of five in the state. KBDS program partners with programs at KDHE and organizations across the state of Kansas to support families and communities with education, resources, and referrals to support programs.
Mission
To create a seamless system of birth defects data collection and analysis, collaborative research, and follow-up interventions to better serve children under age 5 with birth defects and to lead prevention efforts to improve outcomes for Kansans.
Purpose
The KBDSP exists to:
- Identify and describe congenital anomalies, stillbirths, and abnormal conditions of newborns
- Detect trends and epidemics in congenital anomalies and abnormal conditions of newborns
- Quantify morbidity and mortality of congenital anomalies and abnormal conditions of newborns
- Stimulate epidemiological research regarding congenital anomalies, stillbirths, and abnormal conditions of newborns
- Identify risk factors for congenital anomalies, stillbirths, and abnormal conditions of newborns
- Facilitate intervention in and prevention of congenital anomalies, stillbirths, and abnormal conditions of newborns
- Facilitate access to treatment for congenital anomalies and abnormal conditions of newborns
- Inform and educate the public about congenital anomalies, stillbirths, and abnormal conditions of newborns
Information for Families & Providers
Click below for more information and resources for families and providers.
Birth Defects Surveillance Program
Program Activities
Referrals to Support Service Programs
In Kansas, around 200 children are born each year with congenital anomalies that may be eligible for support services. KBDS program works closely with the Kansas Early Childhood Developmental Services (KECDS) and Kansas Special Health Care Needs (SHCN), which provide customized support to families. Eligibility requirements and services vary by program.
Kansas Early Childhood Developmental Services
KECDS provides the foundation and framework to build capacity for local Infant Toddler Services of Kansas Programs to create positive outcomes for infants and toddlers and their families. KECDS provides funding to local Infant Toddler Services of Kansas Programs to assist in maintaining and implementing a statewide system of coordinated, comprehensive, multidisciplinary early intervention services for infants and toddlers with disabilities, from birth to age three, and their families.
Kansas Special Health Care Needs
SHCN provides tailored care coordination to children up to the age of 21 and families who have eligible medical conditions. Additionally, the program provides formula services and food product support that is required for conditions screened on the newborn screening panel. Each application is reviewed by an eligibility specialist. Financial support requires verification of household income, and requests are approved on a case-by-case basis, dependent on available program funding. Children must be residents of Kansas and are eligible for services from birth through age 21. Receipt of Supplemental Security Income (SSI) is considered an automatic qualifier for program eligibility. Medical eligibility is required, and a list of qualifying medical conditions can be found here.
Education and Awareness Activities
One of the priorities of KBDS program is to inform and provide education and resources related to prevention activities, in addition to raising awareness on supports and services to those impacted by a diagnosis. KBDS works closing with state and local organizations to support maternal & child health initiatives.
Birth Defects Surveillance Program
Program History
Congenital anomalies have been reported on the Kansas birth certificate since 1979. In 1982, Kansas administrative regulations (K.A.R. 28-1-4) required hospital administrators to report to the Kansas Department of Health and Environment (KDHE) congenital malformations in infants under one year of age. In the mid-1980s, Title V Maternal and Child Health (MCH) through the Kansas Special Health Care Needs (KS-SHCN) program assumed responsibility for setting up a database, working with hospitals to improve paper reporting, data entry, and linking with vital statistics data.
The passage of Senate Bill 418 in the 2004 legislative session provided the statutory authority (K.S.A. 65-1,241 thru 65-1,246) for the KDHE to establish a birth defects information system. Among the provisions of this legislation are reported by physicians, hospitals and freestanding birthing centers concerning all patients under five years of age. In 2010, K.A.R. 28-4-520 through 28-4-521 expanded the list of congenital anomalies that are reportable to KDHE. In 2022, the ICD-9 references and codes were removed, and the Kansas Birth Defects Surveillance Reporting Manual was adopted. The manual includes all the notifiable conditions to be reported to the KBDS program.