Most individuals with sickle cell disease and sickle cell trait are diagnosed at birth with universal newborn screening (NBS). However, there is considerable variability in how families receive this information from state departments of health follow-up programs, primary care providers, and even community-based organizations. There is often a gap in knowledge and self-confidence in sharing information, as there are no certifications or evidence-based best practices for NBS coordinators. There are also cultural and social determinants of health factors that should be considered when providing this information to families and should be integrated into NBS training. 

The Cincinnati Comprehensive Sickle Cell Center has hosted a Hemoglobinopathy Counselor Training Course for over 20 years, and it is one of the only programs in the country. There are several gaps in knowledge and comfort levels among NBS coordinators that have identified a clear need for an interactive training platform and companion materials to educate families.

Understanding the Problem

The team conducted 10 interviews with partners, Newborn Screening Coordinators, and parents to understand the current landscape of sickle cell trait (SCT) education. To complement the primary research, the team benchmarked current sites, videos, websites, handouts, and physical kits that explain SCT. In addition, after gaining functional literacy the team began visualizing maps to help partners and LWC staff gain a contextual understanding of sickle cell trait education.