Hemoglobinopathies Newborn Screening Project
Project Summary
Approximately 30% of infants identified with sickle cell trait by newborn screening in Colorado are parent-designated to be of Hispanic ethnicity. While comparable data are not yet available in all eight states of the Mountain States Region, it is likely that a substantial number of newly identified sickle cell carriers throughout the region are not identified by their parents as of African American origin. Providers in the Mountain States Region have reported that when sickle cell outreach programs are offered, providing free laboratory testing for parents and family members, there is significant interest and attendance by those of Hispanic and other backgrounds. Culturally appropriate follow-up programs must thus reach a variety of communities, including African Americans, recent African immigrant families, and those of Hispanic, Caucasian and other backgrounds.
NBS hemoglobinopathy follow-up staff from all states in the Mountain States Region have formed a collaborative group to standardize follow-up activities in the region. Despite the national controversy about the value of notification of sickle cell and other hemoglobin traits, all states in the MS Region strongly endorse contact of at least NBS submitters and primary care providers when a hemoglobinopathy trait is identified. Following a collaborative meeting with Dr. Joseph Telfair of the National Coordinating and Evaluation Center (NCEC), the group endorsed a goal of hemoglobinopathy testing to extended families of infants with sickle cell disease and trait throughout the region. There is consensus on the key role of primary care providers in the fulfillment of this goal, as well as the need for collaboration with community based resources.