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Newborn Screening Long-term Follow-up Resources

CPHI developed a Long-term Follow-up (LTFU) Roadmap to support state newborn screening (NBS) programs design and implement effective LTFU systems. Developed in collaboration with NBS programs and refined through community listening sessions, the Roadmap offers a flexible structure that programs can tailor to their goals, authority, and resources.

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Because implementation varies by jurisdiction, the Roadmap does not prescribe a single standard. Instead, each program should assess its own capacity and determine an achievable phase of implementation. To support this process, we developed a LTFU Roadmap Guide outlining key considerations for building and sustaining a NBS LTFU program, forming partnerships, and identifying barriers to address.

Long-term Follow-up Roadmap

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.

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.

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.

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 Dataset.​

These resources were developed as part of a project that was supported by the Health Resources and Services Administration of the US Department of Health and Human Services, contract order 75R60224R0015. The findings and conclusions in this work are those of the authors and do not necessarily represent the official position of the US Department of Health and Human Services. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, US Department of Health and Human Services, or US Government.

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