RESOURCES

NEWBORN SCREENING RESOURCES

Several state newborn screening programs and midwives came together to create tools to improve the utilization of newborn screening for community birth (home or birth center deliveries) families. Our group noted that while midwives often offer newborn screening to their patients, there are several barriers that may lead to families opting out of the screen. One concern is that midwives may not have the tools necessary to educate expecting parents on their concerns around newborn screening and/or may not understand the importance of newborn screening.

Newborn Screening Shared Decision Making Tool

This tool is designed for the midwife and family to complete together to decide whether or not do do the newborn screen. A generic version and a Washington-state specific version are available.

Generic Version

Washington Version

Newborn Screening: Did You Know?

This tool provides the midwife with background information that may be helpful when they have a discussion with families about newborn screening. A generic version and a Washington-state specific version are available.

Generic Version

Washington Version

Newborn Screening Consent and Declination Form

If a family opts out of doing the newborn screen and the midwife wants a record of that decision, they can have the family complete this form. Click the button below to the right to open and download the fillable form.

Generic Version

Long-term Follow-up Roadmap

The long-term follow-up (LTFU) roadmap outlines four stages of LTFU: 1) Connection to Care; 2) Appropriate Treatment and Care; 3) Developmental Milestone and Disease Outcomes; and 4) Family Well-Being and Health Outcomes

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Long-term Follow-up Roadmap Guide

This guide has been designed to help NBS programs develop long-term follow-up (LTFU) programs and is based on the LTFU Roadmap. Programs can customize their paths and can develop their LTFU programs in phases.

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Template for Data Collection for Aggregate Minimal Data Set

This workbook provides an example of the aggregate data to collect for the minimal data set described in the Long-term Follow-up Roadmap.

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Minimal Plus Dataset Examples

This workbook provides information for each disorder on the Recommended Uniform Screening Panel. For each condition, examples are provided to guide programs through discussions with local stakeholders of data elements and schedules for the Minimal Plus Data Set.

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RESOURCES

NEWBORN SCREENING RESOURCES

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