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

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 He...

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Autores principales: Sheller, Ruthanne, Ojodu, Jelili, Griffin, Emma, Edelman, Sari, Yusuf, Careema, Pigg, Trey, Huston, Alissa, Fitzek, Brian, Boyle, John G., Singh, Sikha
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2020
Materias:
Immunology
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7655545/
https://www.ncbi.nlm.nih.gov/pubmed/33193375
http://dx.doi.org/10.3389/fimmu.2020.577853
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author Sheller, Ruthanne
Ojodu, Jelili
Griffin, Emma
Edelman, Sari
Yusuf, Careema
Pigg, Trey
Huston, Alissa
Fitzek, Brian
Boyle, John G.
Singh, Sikha
author_facet Sheller, Ruthanne
Ojodu, Jelili
Griffin, Emma
Edelman, Sari
Yusuf, Careema
Pigg, Trey
Huston, Alissa
Fitzek, Brian
Boyle, John G.
Singh, Sikha
author_sort Sheller, Ruthanne
collection PubMed
description 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.
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spelling pubmed-76555452020-11-13 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 Sheller, Ruthanne Ojodu, Jelili Griffin, Emma Edelman, Sari Yusuf, Careema Pigg, Trey Huston, Alissa Fitzek, Brian Boyle, John G. Singh, Sikha Front Immunol Immunology 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. Frontiers Media S.A. 2020-10-28 /pmc/articles/PMC7655545/ /pubmed/33193375 http://dx.doi.org/10.3389/fimmu.2020.577853 Text en Copyright © 2020 Sheller, Ojodu, Griffin, Edelman, Yusuf, Pigg, Huston, Fitzek, Boyle and Singh http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Immunology
Sheller, Ruthanne
Ojodu, Jelili
Griffin, Emma
Edelman, Sari
Yusuf, Careema
Pigg, Trey
Huston, Alissa
Fitzek, Brian
Boyle, John G.
Singh, Sikha
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Immunology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7655545/
https://www.ncbi.nlm.nih.gov/pubmed/33193375
http://dx.doi.org/10.3389/fimmu.2020.577853
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