Our Work Consensus/Advisory Activity Newborn Screening: Current Landscape and Future Directions

Newborn Screening: Current Landscape and Future Directions

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A committee of experts will conduct a study examining the current landscape of newborn screening (NBS) systems, processes, and research in the United States and consider sustainable adoption of screening for new conditions using new technologies. The report will provide both short-term options to strengthen existing NBS programs and establish a vision for the next 5-15 years. This study was funded by the Department of Health and Human Services Office on Women's Health in response to a Congressional request. Supplementary funding was provided by the Chan Zuckerberg Initiative to enable additional public engagement.

View the report release webinar.

Systematic and Nationally Coordinated Approach for Newborn Blood Spot Screening Is Needed, Says New Report May 1, 2025 News Release

About Publications/Resources Past Events

Featured publication

Newborn Screening in the United States: A Vision for Sustaining and Advancing Excellence

Consensus

2025

For over 60 years, public health newborn screening programs have served families in the United States by identifying babies at risk of serious but treatable conditions and connecting them to clinical care. Today, more than 98% of infants receive dried blood spot screening, which entails collecting a...

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Policy Brief

Policy Brief for U.S. Department of Health and Human Services (HHS)

Policy Brief

This brief outlines report recommendations for a vision for greater national coordination, priority setting, and guidance spearheaded by HHS.

Highlights

One Pager for Families and the Rare Disease Community

Highlights

This guide outlines report recommendations on priority setting to guide strategic and responsive NBS research that informs timely, evidence-based decision-making.

Highlights

This document outlines key findings and recommendations from the report.

Educational Resource

Action Guide for NBS Programs

Educational Resource

This guide outlines report recommendations on priority setting to guide strategic and responsive NBS research that informs timely, evidence-based decision-making.

Action Guide for Researchers

Educational Resource

This guide outlines report recommendations on priority setting to guide strategic and responsive NBS research that informs timely, evidence-based decisionmaking.

Action Guide for Providers

Educational Resource

This guide outlines report recommendations for health care providers to engage families by expanding newborn screening education and awareness.

Commissioned Paper

What We Heard: Engagement Summary on Newborn Screening in the United States

Commissioned Paper

This paper presents input received from people personally and/or professionally affected by newborn screening in the United States: parents, caregivers, and patients; newborn screening professionals; members of the rare disease community; health administrators, payers, and industry; and health care providers.

Executive Summary (English) on Newborn Screening: What We Heard

Commissioned Paper

Executive Summary (Spanish) on Newborn Screening: What We Heard

Commissioned Paper

Background Material

Listening Sessions_What to Expect

Background Material

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Newborn Screening: Current Landscape and Future Directions

Dropdown items

Featured publication

Newborn Screening in the United States: A Vision for Sustaining and Advancing Excellence

Policy Brief

Highlights

Educational Resource

Commissioned Paper

Background Material