ArticlePediatrics2016
Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid.
Article in Pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05159011 (Access to Genetic Information Leveraging Innovative Technology), which is not on this map. Cited by 39 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Access to Genetic Information Leveraging Innovative Technology
Who cites it
39 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Principles of Genomic Newborn Screening Programs: A Systematic Review.JAMA network open · 2021Pooled it
- A behavior-theoretic evaluation of values clarification on parental beliefs and intentions toward genomic sequencing for newborns.Social science & medicine (1982) · 2021Trial
- Values clarification and parental decision making about newborn genomic sequencing.Health psychology : official journal of the Division of Health Psychology, American Psychological Association · 2020Trial
- Newborn Sequencing in Genomic Medicine and Public Health.Pediatrics · 2017Trial
- Parental reactions to and preferences for genomic newborn screening in Germany: findings from a scenario-based survey experiment.European journal of human genetics : EJHG · 2026Article
- Tension between the need for certainty and numerous uncertainties-A focus group study on various perspectives on a potential genomic newborn screening program in Germany.Journal of genetic counseling · 2025Article
- Perceptions of genomic newborn screening: a cross-sectional survey conducted with UK medical students.BMJ open · 2024Article
- Newborn screening for Duchenne muscular dystrophy: the perspectives of stakeholders.The Lancet regional health. Western Pacific · 2024Article
- Australian Public Perspectives on Genomic Newborn Screening: Risks, Benefits, and Preferences for Implementation.International journal of neonatal screening · 2024Article
- Genetics Adviser: The development and usability testing of a new patient digital health application to support clinical genomic testing.Genetics in medicine open · 2024Article
- Genetic counselling resources in non-english languages: A scoping review.PEC innovation · 2023Article
- Genomic newborn screening for rare diseases.Nature reviews. Genetics · 2023Review
- Newborn screening research sponsored by the NIH: From diagnostic paradigms to precision therapeutics.American journal of medical genetics. Part C, Seminars in medical genetics · 2022Article
- Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs.International journal of neonatal screening · 2022Article
- A Window of Opportunity for Newborn Screening.Molecular diagnosis & therapy · 2022Article
- Application of a next-generation sequencing (NGS) panel in newborn screening efficiently identifies inborn disorders of neonates.Orphanet journal of rare diseases · 2022Article
- Exome/Genome-Wide Testing in Newborn Screening: A Proportionate Path Forward.Frontiers in genetics · 2022Article
- Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population.Frontiers in genetics · 2022Article
- Actionability of commercial laboratory sequencing panels for newborn screening and the importance of transparency for parental decision-making.Genome medicine · 2021Article
- Genomic Sequencing for Newborn Screening: Results of the NC NEXUS Project.American journal of human genetics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Advances in genomic sequencing technology have raised fundamental challenges to the traditional ways genomic information is communicated. These challenges will become increasingly complex and will affect a much larger population in the future if genomics is incorporated into standard newborn screening practice. Clinicians, public health officials, and other stakeholders will need to agree on the types of information that they should seek and communicate to parents. Currently, few evidence-based and validated tools are available to support parental informed decision-making. These tools will be necessary as genomics is integrated into clinical practice and public health systems. In this article we describe how the North Carolina Newborn Exome Sequencing for Universal Screening study is addressing the need to support parents in making informed decisions about the use of genomic testing in newborn screening. We outline the context for newborn screening and justify the need for parental decision support. We also describe the process of decision aid development and the data sources, processes, and best practices being used in development. By the end of the study, we will have an evidenced-based process and validated tools to support parental informed decision-making about the use of genomic sequencing in newborn screening. Data from the study will help answer important questions about which genomic information ought to be sought and communicated when testing newborns.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.