Severe combined immunodeficiency (SCID) is T cell development disorders in the immune system and can be detected at birth. As of December 2018, all 53 newborn screening (NBS) programs within the United States and associated territories offer universal screening for SCID. The Association of Public Health Laboratories (APHL), along with the Immune Deficiency Foundation (IDF), surveyed public health NBS system laboratory and follow-up coordinators regarding their NBS program's screening methodologies and targets, protocols for stakeholder notifications, and long-term follow-up practices. This report explores the variation that exists across NBS practices, revealing needs for efficiencies and educational resources across the NBS system to ensure the best outcomes for newborns.
Keywords: United States; communication pathways; education; long-term follow-up; newborn screening (NBS); severe combined immunodeficiency.
Copyright © 2020 Sheller, Ojodu, Griffin, Edelman, Yusuf, Pigg, Huston, Fitzek, Boyle and Singh.