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The Landscape of Severe Combined Immunodeficiency Newborn Screening in the United States in 2020: A Review of Screening Methodologies and Targets, Communication Pathways, and Long-Term Follow-Up Practices
- Source :
- Frontiers in Immunology, Vol 11 (2020), Frontiers in Immunology
- Publication Year :
- 2020
- Publisher :
- Frontiers Media S.A., 2020.
-
Abstract
- 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.
- Subjects :
- 0301 basic medicine
lcsh:Immunologic diseases. Allergy
medicine.medical_specialty
Long term follow up
newborn screening (NBS)
communication pathways
Immunology
Aftercare
long-term follow-up
03 medical and health sciences
Neonatal Screening
0302 clinical medicine
Stakeholder Participation
medicine
Humans
Immunology and Allergy
Healthcare Disparities
Practice Patterns, Physicians'
Quality Indicators, Health Care
Original Research
Severe combined immunodeficiency
Newborn screening
education
business.industry
Communication
Public health
Infant, Newborn
food and beverages
severe combined immunodeficiency
medicine.disease
Long-Term Care
Quality Improvement
United States
030104 developmental biology
Health Care Surveys
Family medicine
Educational resources
embryonic structures
business
lcsh:RC581-607
030215 immunology
Subjects
Details
- Language :
- English
- ISSN :
- 16643224
- Volume :
- 11
- Database :
- OpenAIRE
- Journal :
- Frontiers in Immunology
- Accession number :
- edsair.doi.dedup.....ac3418f2e727641922f9fa753d7d3dd7