How Does the UBDN Monitor Birth Defects?
Why does the Utah Birth Defect Network (UBDN) monitor birth defects in Utah?
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.
- 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
Which birth defects does the UBDN track?
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).
- All major birth defects
- Some minor defects are excluded
How does the UBDN monitor birth defects?
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.
- Reports from hospitals, labs, clinics and birthing facilities
- Medical records abstraction
- Data analysis
How long has the UBDN been monitoring 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.
- UBDN began monitoring neural tube defects (e.g. spina bifida) in 1994
- In 1999 the UBDN expanded to collect all major structural birth defects