Variability in Notification of Positive Newborn Screening Results for Sickle Cell Trait Across the United States.

ABSTRACT: Universal in the United States (US) since 2006, newborn screening (NBS) programs for sickle cell disease (SCD) allow for early identification of the disease and, as an unintentional byproduct, identification of sickle cell trait (SCT). Unlike other carrier states, SCT is highly prevalent and is found in nearly 3 million Americans, which results in important reproductive implications. Currently, all NBS programs in the US are responsible for their own policies regarding SCT notification, and little is known about how SCT notification practices are performed and how these practices vary across NBS programs. We surveyed NBS programs personnel in all 50 states, the District of Columbia, and the US' territories of Puerto Rico and Guam (n = 53) using an electronic survey. There was a 100%

SUBMITTER: Scott JL 

PROVIDER: S-EPMC11671650 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature