Purpose: To describe how efficiently newborn screening programs are identifying infants with each disorder.
a) Percent of infants that have a confirmed diagnosis by a physician, but did not have an out-of-range newborn screen result on their valid dried blood spot screen or critical congenital heart disease (CCHD) screen, reported by disorder.3
b) Percent of infants that have a confirmed diagnosis by a physician, but did not have an out-of-range newborn screen result because they did not have a valid dried blood spot screen or critical congenital heart disease (CCHD) newborn screen, reported by disorder.3
Screening Data for Denominators:
- a) Data are pulled from the cases entered into the NewSTEPs Repository. The denominator is calculated as the summation of all cases with confirmed diagnosis from your state entered into the repository. The denominator should include both confirmed cases identified by newborn screening and not identified by newborn screening.
- b) Number of newborns, born in your state, considered eligible for newborn screening.
- This is the number of missed cases known by the state. Additional information for each state will be collected on the state profile to reflect how the NBS program collects information on missed cases (i.e. active surveillance vs. passive surveillance).
- Follow-up time for missed cases is up to 18 years of age.
- Individual cases of early hearing detection and intervention (EHDI) are not collected in the NewSTEPs Repository).