RESUMEN
Testing immunoreactive trypsinogen (IRT) is the first step in cystic fibrosis (CF) newborn screening. While high IRT is associated with CF, some cases are missed. This survey aimed to find factors associated with missed CF cases due to IRT levels below program cutoffs. Twenty-nine states responded to a U.S-wide survey and 13 supplied program-related data for low IRT false screen negative cases (CFFN) and CF true screen positive cases (CFTP) for analysis. Rates of missed CF cases and odds ratios were derived for each factor in CFFNs, and two CFFN subgroups, IRT above ("high") and below ("low") the CFFN median (39 ng/mL) compared to CFTPs for this entire sample set. Factors associated with "high" CFFN subgroup were Black race, higher IRT cutoff, fixed IRT cutoff, genotypes without two known CF-causing variants, and meconium ileus. Factors associated with "low" CFFN subgroup were older age at specimen collection, Saturday birth, hotter season of newborn dried blood spot collection, maximum ≥ 3 days laboratories could be closed, preterm birth, and formula feeding newborns. Lowering IRT cutoffs may reduce "high" IRT CFFNs. Addressing hospital and laboratory factors (like training staff in collection of blood spots, using insulated containers during transport and reducing consecutive days screening laboratories are closed) may reduce "low" IRT CFFNs.
RESUMEN
Newborn screening (NBS) is a vital public health program and delays in the screening process can lead to catastrophic outcomes for infants and their families. Efforts to improve screening quality in Tennessee are proactive and ongoing. From these efforts, an open-access dashboard has been developed to address a need for methods to better visualize performance data, promote data transparency, and drive quality improvement. Dashboard development was a collaboration between a fellow from the Association of Public Health Laboratories (APHL) and Tennessee NBS staff. Iterative dashboard prototypes were developed using Tableau software and incorporated feedback from Tennessee birthing facility staff and health experts. Infrastructure and procedures were created to reduce the burden of future dashboards. Eight NBS performance indicators are visualized across several views. These views are designed to provide an overview of NBS performance data when first accessed, then allow for a drill-down into specific data. This dashboard drives introspection at the state and facility level, making it possible to identify potential issues and necessary corrective actions earlier, therefore improving the completeness and timeliness of NBS in Tennessee. The experiences from developing this dashboard can be applied to future dashboard development in Tennessee NBS and other public health programs implementing similar measures.
