Developing an Online Dashboard to Visualize Performance Data-Tennessee Newborn Screening Experience.

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.

Newborn Screening Practices for Beta-Thalassemia in the United States.

Beta-thalassemia, a heritable condition of abnormal hemoglobin production, is not a core condition on the United States Recommended Uniform Screening Panel (RUSP) for state and territorial newborn screening (NBS) programs. However, screening for sickle cell disease (which is on the core RUSP) also detects reduced or absent levels of hemoglobin (Hb) A and certain other Hb variants associated with beta-thalassemia and, thus, allows for a timely referral to appropriate healthcare to minimize sequalae of the disease. The Association of Public Health Laboratories' Hemoglobinopathy Workgroup administered a comprehensive survey of all U.S. NBS programs to assess beta-thalassemia testing methodologies, the cutoffs for defining beta-thalassemia major, and the reporting and follow-up practices. Forty-six (87%) of the programs responded. Thirty-nine of the 46 responding programs (85%) report some form of suspected beta-thalassemia; however, the screening methods, the percentage of Hb A used as a cutoff for an indication of beta-thalassemia major, and the screening follow-up vary widely. The standardization of technical and reporting procedures may improve access to specialty care prior to severe complications, increase genetic counseling, and provide data needed to better understand the public health impact and clinical outcomes of beta-thalassemia in the United States.