Comparison of Recruitment Strategy Outcomes in the National Children’s Study

Park, Christina H.; Winglee, Marianne; Kwan, Jennifer; Andrews, Linda Wasmer; Hudak, Mark L.

doi:10.1542/peds.2016-2822

Cited by 10 publications

(6 citation statements)

References 29 publications

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“…It is therefore the ethical duty of research teams to design and execute clinical studies with past transgressions in mind, actively working to build trust while also avoiding potential for coercion [12]. Indeed, relationship building among research teams and potential participants has shown to be key to recruitment, including in perinatal research [13][14][15]. What remains less clear is how logistical aspects of the recruitment process affect enrollment of Black women into observational studies of perinatal biology.…”

Section: Introductionmentioning

confidence: 99%

A Comparison of Recruitment Methods for a Prospective Cohort Study of Perinatal Psychoneuroimmunology among Black American Women

Gillespie

2021

J Urban Health

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Improved understanding of perinatal psychoneuroimmunology is needed, particularly to combat the high rates of maternal and infant mortality witnessed among Black Americans. We compared the success of recruitment by advertisement, in person, or by phone during the course of a prospective cohort study of perinatal psychoneuroimmunology among Black American women. Over 24 months, 363 women were assessed and 96 were enrolled. Women recruited by phone were less likely to complete full screening than women recruited by advertisement (OR = 0.32, p < 0.01) or in person (OR = 0.19, p < 0.01). Women recruited by advertisement were less likely to complete full screening than women recruited in person (OR = 0.60, p = 0.05). Odds of unsuccessful contact were 13.2 and 11.5 times greater among women recruited by phone versus by advertisement or in person, respectively (p values ≤ 0.01). Women recruited by advertisement and in person showed similar odds of unsuccessful contact (OR = 0.87, p = 0.76). Odds of screening decline were similar following recruitment in person or by phone when contact was successful (OR = 0.85, p = 0.76). Focusing on eligible women (n = 142), those recruited in person were significantly less likely to enroll than those recruited by advertisement (OR = 0.28, p < 0.01; Fig. 4). Considering all women (n = 363), odds of enrollment did not significantly differ among the recruitment groups (p values ≥ 0.09). Most (93.8%) enrolled women consented to biological specimen banking. Findings from this brief report provide a starting point for perinatal scientists to critically consider not only how to maximize research efforts but also how research team actions may perpetuate or assuage the research mistrust introduced by long-standing social inequities.

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Section: Introductionmentioning

confidence: 99%

A Comparison of Recruitment Methods for a Prospective Cohort Study of Perinatal Psychoneuroimmunology among Black American Women

Gillespie

2021

J Urban Health

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“…The researchers, 60 percent of whom have more than 10 years of scientific experience, range from undergraduate and graduate students to research scientists, professors and medical doctors. Over fifty peer reviewed publications have resulted from use of NCS Vanguard data and specimens ( 1 – 7 , 24 – 69 ) as of January 2021.…”

Section: Resultsmentioning

confidence: 99%

“…The ARS was followed in June 2012 by another substudy, the Provider-Based Sampling (PBS) Substudy, which was conducted in three study locations ( 6 ). Overall, the PBS strategy proved most effective and cost efficient ( 7 ). In December of 2014, the Vanguard Study was discontinued by the National Institutes of Health (NIH) Director following the recommendations of a National Children's Study Working Group ( 8 , 9 ).…”

Section: Introductionmentioning

confidence: 99%

The National Children's Study Archive Model: A 3-Tier Framework for Dissemination of Data and Specimens for General Use and Secondary Analysis

Gilbertson

Forrester²,

Andrews³

et al. 2021

Front. Public Health

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The National Children's Study (NCS) Archive was created as a repository of samples, data, and information from the NCS Vanguard Study—a longitudinal pregnancy and birth cohort evaluating approaches to study influence of environmental exposures on child health and development—to provide qualified researchers with access to NCS materials for use in secondary research. The National Children's Study Archive (NCSA) model is a 3-tiered access model designed to make the wealth of information and materials gathered during the NCS Vanguard Study available at a user appropriate level. The NCSA model was developed as a 3-tier framework, for users of varying access levels, providing intuitive data exploration and visualization tools, an end-to-end data and sample request management system, and a restricted portal for participant-level data access with a team of experts available to assist users. This platform provides a model to accelerate transformation of information and materials from existing studies into new scientific discoveries.Trial Registration:ClinicalTrials.gov Identifier: NCT00852904 (first posted February 27, 2009).

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“…Our recent survey found that, generally, women are interested in participating in programs like Early Check [27], so a key activity has been testing and evaluating remote recruitment procedures to reach these women and their families. An analysis of outreach and recruitment approaches in the National Children’s Study found that there is no magic bullet for outreach and recruitment, and multiple strategies are required [28]. We designed a systematic, evidence-based, multiphase method approach for large-scale recruitment that excludes in-person recruitment (at least for the present time).…”

Section: Key Components Of Early Checkmentioning

confidence: 99%

Early Check: translational science at the intersection of public health and newborn screening

et al. 2019

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Background Newborn screening (NBS) occupies a unique space at the intersection of translational science and public health. As the only truly population-based public health program in the United States, NBS offers the promise of making the successes of translational medicine available to every infant with a rare disorder that is difficult to diagnose clinically, but for which strong evidence indicates that presymptomatic treatment will substantially improve outcomes. Realistic NBS policy requires data, but rare disorders face a special challenge: Screening cannot be done without supportive data, but adequate data cannot be collected in the absence of large-scale screening. The magnitude and scale of research to provide this expanse of data require working with public health programs, but most do not have the resources or mandate to conduct research. Methods To address this gap, we have established Early Check, a research program in partnership with a state NBS program. Early Check provides the infrastructure needed to identify conditions for which there have been significant advances in treatment potential, but require a large-scale, population-based study to test benefits and risks, demonstrate feasibility, and inform NBS policy. Discussion Our goal is to prove the benefits of a program that can, when compared with current models, accelerate understanding of diseases and treatments, reduce the time needed to consider inclusion of appropriate conditions in the standard NBS panel, and accelerate future research on new NBS conditions, including clinical trials for investigational interventions. Trial registration Clinicaltrials.gov registration # NCT03655223 . Registered on August 31, 2018.

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Comparison of Recruitment Strategy Outcomes in the National Children’s Study

Abstract: PBS demonstrated the optimal combination of recruitment success, efficiency, cost, and population representativeness and serves as a model for the assembly of future prospective probability-based birth cohorts.

Cited by 10 publications

References 29 publications

A Comparison of Recruitment Methods for a Prospective Cohort Study of Perinatal Psychoneuroimmunology among Black American Women

A Comparison of Recruitment Methods for a Prospective Cohort Study of Perinatal Psychoneuroimmunology among Black American Women

The National Children's Study Archive Model: A 3-Tier Framework for Dissemination of Data and Specimens for General Use and Secondary Analysis

Early Check: translational science at the intersection of public health and newborn screening

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