Severe Combined Immunodeficiency (SCID) In-Person Meeting

Severe Combined Immunodeficiency (SCID) newborn screening was added to the Recommended Uniform Screening Panel (RUSP) in May 2010. The implementation of SCID screening at the state level has been steady and yet 20 states continue to face barriers to universal screening of SCID as of April 1, 2015. Current challenges faced by states newborn screening programs in implementing SCID screening include (1) integration of new technology within the lab, (2) laboratory staffing to conduct tests, (3) clinical follow-up capacity and resources, (4) funding for personnel, equipment, education, and (5) legislative or statutory approval. The goal of this meeting was to provide an open forum to discuss these challenges, share experiences, and identify strategies for moving all programs toward full SCID implementation. Purpose: To convene Health Resources and Services Administration (HRSA) SCID grantees and non-grantees who support the implementation of new disorders added to RUSP, as well as pertinent partners and stakeholders who have significant experience with implementing SCID to screening panels in their respective jurisdictions.
Meeting Objectives:

1. Participants provided input and offer expert guidance to attendees on implementation of SCID.
2. Identified Quality Improvement initiatives for SCID implementation.
3. Developed key components of a strategic template consisting of model practices and quality improvement initiatives for implementation of new disorders within newborn screening programs.