Evidence map›Paper›PMID 30086550›Full record

ArticlePublic health genomics2017

Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

Elizabeth G Moore, Myra Roche, Christine Rini, Edward W Corty, Zahra Girnary, Julianne M O'Daniel, Feng-Chang Lin, Giselle Corbie-Smith, James P Evans, Gail E Henderson and 1 more

Abstract read
In one paragraph

Article in Public health genomics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
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

7 citing papers in PubMed.

  1. Trial
  2. Article
  3. Review
  4. Article
  5. Article
  6. Parents' perceptions of personal utility of exome sequencing results.Genetics in medicine : official journal of the American College of Medical Genetics · 2020
    Article
  7. Successful recruitment and retention of diverse participants in a genomics clinical trial: a good invitation to a great party.Genetics in medicine : official journal of the American College of Medical Genetics · 2019
    Article
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

11 authors.

Elizabeth G MooreBlue Cross Blue Shield of North Carolina, Durham, North Carolina, USA.
Myra RocheSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Christine RiniHackensack Meridian Health Network, Hackensack, New Jersey, USA.
Edward W CortySchool of Medicine, Florida State University, Tallahassee, Florida, USA.
Zahra GirnarySchool of Medicine, University of South Carolina, Durham, South Carolina, USA.
Julianne M O'DanielSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Feng-Chang LinSchool of Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Giselle Corbie-SmithSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
James P EvansSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Gail E HendersonSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Jonathan S BergSchool of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.

Funding

North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2U01HG006487 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI BERG, JONATHAN S, POWELL, BRADFORD C. · 2012 to 2021
$22.7M
NHGRI NIH HHS U01 HG006487
6 · The paper itself

Abstract

BACKGROUND/

aimsRecent genomic medicine initiatives underscore the importance of including diverse participants in research. Considerable literature has identified barriers to and facilitators of increasing diversity, yet disparities in recruiting and retaining adequate numbers of participants from diverse groups continue to limit the generalizability of clinical genomic research.

methodsThe North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing study employed evidence-based strategies to enhance the participation of under-represented minority patients. In this study, we evaluate the impact of our efforts by systematically analyzing the "cascade" of attrition of participants throughout study interactions.

resultsAlthough successful in recruiting a cohort that included ~30% non-Caucasian patients overall, the study still enrolled and retained a lower proportion of minorities compared to the pool of eligible patients who were nominated. We evaluated sociodemographic characteristics and related variables as potential factors associated with attrition throughout these phases of the study.

conclusionsThese results suggest that varied approaches will be needed to increase participation in genomic medicine research. Our findings highlight factors to consider when developing strategies to address this critical need. Failing to include a broad range of populations in research studies will exacerbate existing disparities in the translation of genomic sequencing to medical care.

Indexed as

DiversityEnrollmentGenomic medicineRecruitmentRetention

Identifiers

PMID30086550
PMCPMC6112240

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Registered trials

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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.