Evidence map›Paper›PMID 35646095›Full record

ArticleFrontiers in genetics2022

Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.

Holly L Peay, Angela You Gwaltney, Rebecca Moultrie, Heidi Cope, Beth Lincoln- Boyea, Katherine Ackerman Porter, Martin Duparc, Amir A Alexander, Barbara B Biesecker, Aminah Isiaq and 4 more

Open access · goldAbstract read
In one paragraph

Article in Frontiers in genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 1 pooled it
4.0field-weighted citation impact, top 6% of its field
1 · What the graph read from 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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.

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  17. When is the best time to screen and evaluate for treatable genetic disorders?: A lifespan perspective.American journal of medical genetics. Part C, Seminars in medical genetics · 2023
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors at 2 institutions in 1 country.

Holly L PeayGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Angela You GwaltneyGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Rebecca MoultrieGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Heidi CopeGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Beth Lincoln- BoyeaGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Katherine Ackerman PorterGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Martin DuparcGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Amir A AlexanderDepartment of Biostatistics and Data Science, Wake Forest School of Medicine, Winston Salem, NC, United States.
Barbara B BieseckerGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Aminah IsiaqGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Jennifer CheckDepartment of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC, United States.
Lisa GehtlandGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Donald B BaileyGenomics, Bioinformatics, and Translational Research Center, RTI International, Research Triangle Park, NC, Unites States.
Nancy M P KingDepartment of Social Sciences and Health Policy, Wake Forest School of Medicine, Winston-Salem, NC, United States.
RTI International · USWake Forest University · US

Funding

Early Check: A Collaborative Innovation to Facilitate Pre-Symptomatic Clinical Trials in NewbornsU01TR001792 · NCATS · RESEARCH TRIANGLE INSTITUTE · PI BAILEY, DONALD B, COTTEN, CHARLES MICHAEL · 2016 to 2020
$7.8M
NCATS NIH HHS U01 TR001792
6 · The paper itself

Abstract

A challenge in implementing population-based DNA screening is providing sufficient information, that is, understandable and acceptable, and that supports informed decision making. Early Check is an expanded newborn screening study offered to mothers/guardians whose infants have standard newborn screening in North Carolina. We developed electronic education and consent to meet the objectives of feasibility, acceptability, trustworthiness, and supporting informed decisions. We used two methods to evaluate Early Check among mothers of participating infants who received normal results: an online survey and interviews conducted via telephone. Survey and interview domains included motivations for enrollment, acceptability of materials and processes, attitudes toward screening, knowledge recall, and trust. Quantitative analyses included descriptive statistics and assessment of factors associated with knowledge recall and trust. Qualitative data were coded, and an inductive approach was used to identify themes across interviews. Survey respondents (

Indexed as

DNA screeningelectronic consentevaluationinformed consentnewborn screeningparticipant attitudes

Identifiers

PMID35646095
PMCPMC9133477
OpenAlexW4280530491

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.