Utah Birth Defect Newtork
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Striving to Prevent Birth Defects
Defect Information Defect Information Prevention Services Providers and Members About UBDN

How Does the UBDN Monitor Birth Defects?

Why does the Utah Birth Defect Network (UBDN) monitor birth defects in Utah?

  • 81.5% of birth defect cases in Utah from 1999-2003 have no known cause
  • 1 in 4 infant deaths in Utah is attributable to birth defects
  • 1 in 50 births in Utah is affected by a birth defect tracked by the UBDN
Tracking and studying birth defects in Utah provides the information needed to monitor the burden of disease locally and statewide, to assess services, to allocate resources for optimal care, and to evaluate prevention efforts.

Which birth defects does the UBDN track?

  • All major birth defects
  • Some minor defects are excluded
The UBDN tracks all major structural birth defects. However, some of the more mild conditions are not tracked due to limited resources. These mild conditions include those such as heart findings detected in the preterm baby and that often resolve over time (e.g., patent ductus arteriosus); mild conditions not leading to treatment (e.g., coronal hypospadias not needing surgery); or conditions that usually do not lead to major medical concerns except perhaps in later stages of life (mitral prolapse).

How does the UBDN monitor birth defects?

  • Reports from hospitals, labs, clinics and birthing facilities
  • Medical records abstraction
  • Data analysis
Utah administrative rule R398-5 gives the UBDN legal authority to collect information about children born in Utah with birth defects. Under this rule, all hospitals and birthing centers located in Utah are required to report a specific set of information to the UBDN any time a baby is born with a birth defect. Once the UBDN receives a report of a birth defect, a UBDN staff member goes out to the reporting facility and collects information from the medical records of the infant and the mother. The collected information is then entered into a secure database. Analysis is then performed by an epidemiologist to identify rates, trends, risk factors, and causes. The UBDN takes great care to insure the confidentiality and security of all information that is collected. All identifying information is removed from the data before analysis.

How long has the UBDN been monitoring birth defects?

  • UBDN began monitoring neural tube defects (e.g. spina bifida) in 1994
  • In 1999 the UBDN expanded to collect all major structural birth defects
In 1994 as a pilot project the UBDN began tracking neural tube defects in Utah. In 1995 and again in 1997 additional defects were added. In 1999 the UBDN received funding from the CDC to expand and collect all major structural birth defects.