ArticleInternational journal of neonatal screening2025
Participatory Workflow Analysis of Newborn Genetic Screening (NBS) to Support Tools for Improved Follow-Up: Comparing the Use Case of Hemoglobinopathy Traits Across U.S. States.
Article in International journal of neonatal screening, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed.
- A Chatbot to Meet Parents' Information Needs for Sickle Cell Trait Newborn Screening Results: Multiple Methods Formative Study.Journal of medical Internet research · 2026Article
- Newborn Screening for Hemoglobinopathies and Thalassemias: Brief History, Recent Activities, and Global Status-2026.International journal of neonatal screening · 2026Review
Corrections and comments
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Communication of newborn screening (NBS) results often fails to provide clear explanations of NBS screen results to parents. Understanding existing NBS workflows is vital for improving NBS follow-up. We sought to describe a diverse range of state NBS programs as a starting point for designing tools to improve NBS follow-up, using the example of hemoglobinopathy traits. At a workshop of the 2023 Association of Public Health Laboratories NBS Symposium, participants filled out a survey and modeled their state workflows. Salient features were extracted and synthesized by state. A subset of models was member checked. Representatives from 19 U.S. states participated in the workflow analysis. Mail was overwhelmingly relied upon to convey the results. NBS programs differed by point of first contact with parents and degree of reliance on third parties. A participatory approach is useful for the rapid preliminary documentation of existing NBS program diversity and opportunities and challenges to improve patient education and follow-up. Future work should broaden the analysis to additional entities or individuals, particularly parents and caregivers.
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Registered trials
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