ArticlePaediatric and perinatal epidemiology2022
Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?
Chyrise B Bradley, Amanda L Tapia, Carolyn G DiGuiseppi, Marti W Kepner, Joy M Kloetzer, Laura A Schieve, Lisa D Wiggins, Gayle C Windham, Julie L Daniels
Open access · greenAbstract readMulticenter Study
In one paragraphArticle in Paediatric and perinatal epidemiology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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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.
2 · The registryThe trial behind it
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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 literatureWho cites it
0 citing papers in PubMed, 1 citations in OpenAlex.
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4 · The recordCorrections and comments
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5 · Who and what moneyAuthors and funding
9 authors at 4 institutions in 1 country.
Chyrise B BradleyDepartment of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.ORCID 0000-0001-5264-4340 Amanda L TapiaDepartment of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Carolyn G DiGuiseppiDepartment of Epidemiology, Colorado School of Public Health, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Marti W KepnerDepartment of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Joy M KloetzerDepartment of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Laura A SchieveNational Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
Lisa D WigginsNational Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
Gayle C WindhamCalifornia Department of Public Health, Environmental Health Investigations Branch, Richmond, California, USA.
Julie L DanielsDepartment of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.ORCID 0000-0002-9658-3743 University of North Carolina at Chapel Hill · USCenters for Disease Control and Prevention · USCalifornia Department of Public Health · USColorado School of Public Health · US
Funding
Centers for Autism & Develop Disabilities Resarch & Epidemiol:A Case-Cohort StudyU10DD000183 · DD · JOHNS HOPKINS UNIVERSITY · PI FALLIN, M DANIELE · 2006 to 2010
$8.2MComponent A: NC Study to Explore Early Development Phase 3 (SEED 3)U01DD001205 · DD · UNIV OF NORTH CAROLINA CHAPEL HILL · PI DANIELS, JULIE L · 2016 to 2020
$6.4MNational CADDRE Study: Child Development and AutismU10DD000182 · DD · UNIVERSITY OF PENNSYLVANIA · PI PINTO-MARTIN, JENNIFER A · 2006 to 2010
$5.8MNational CADDRE Study: Child Development and AutismU10DD000181 · DD · KAISER FOUNDATION RESEARCH INSTITUTE · PI CROEN, LISA A · 2006 to 2010
$5.6MColorado CADDRE: A Case-Cohort StudyU10DD000180 · DD · COLORADO STATE DEPT/PUB HLTH & ENVIRONMT · PI MILLER, LISA ANN · 2006 to 2010
$5.1MNC CADDRE: Study to Explore Early Development (SEED) Phase IIU01DD000749 · DD · UNIV OF NORTH CAROLINA CHAPEL HILL · PI DANIELS, JULIE L · 2011 to 2015
$5.0MNorth Carolina Ctr for Autism & Development Disabilities Research & EpidemiologyU10DD000184 · DD · UNIV OF NORTH CAROLINA CHAPEL HILL · PI DANIELS, JULIE L · 2006 to 2010
$4.7MComponent A: CADDRE: Study to Explore Early Development (SEED) 3U01DD001210 · DD · UNIVERSITY OF COLORADO DENVER · PI ROBINSON, CORDELIA · 2016 to 2020
$3.8MColorado SEED Component A SupplementU01DD001290 · DD · UNIVERSITY OF COLORADO DENVER · PI DIGUISEPPI, CAROLYN G · 2021 to 2025
$3.6MData Coordinating Center for Autism & Other Developmental Disabilities: SEED I&IIU10DD000901 · DD · MICHIGAN STATE UNIVERSITY · PI REED, PHILIP L · 2012 to 2015
$3.5MData Coordinating Center for Autism & Other DisabilitiesU01DD000498 · DD · MICHIGAN STATE UNIVERSITY · PI REED, PHILIP L · 2009 to 2011
$2.3MIntramural CDC HHS CC999999NCBDD CDC HHS U01 DD000498NCBDD CDC HHS U01 DD000749NCBDD CDC HHS U01 DD001205NCBDD CDC HHS U01 DD001210NCBDD CDC HHS U01 DD001290NCBDD CDC HHS U10 DD000180NCBDD CDC HHS U10 DD000181NCBDD CDC HHS U10 DD000182NCBDD CDC HHS U10 DD000183NCBDD CDC HHS U10 DD000184NCBDD CDC HHS U10 DD000901
6 · The paper itselfAbstract
backgroundCurrent knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies.
objectivesDescribe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi-site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment.
methodsWe included families of children, age 2-5 years, participating in SEED (n = 5696) during 2007-2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non-ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed-effects models to evaluate associations of each reason with group and demographics, using POP as reference.
resultsParticipants gave 1-5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49-3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61-2.29) or suspected ASD (OR 3.67, 95% CI 2.99-4.50) and non-ASD DD (OR 1.80, 95% CI 1.50-2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups.
conclusionsWe identified meaningful differences between groups in parent-reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.
Indexed as
Autism Spectrum DisorderChildChild DevelopmentChild, PreschoolDevelopmental DisabilitiesHumansOdds RatioParentsProspective Studiescase-control studieschild developmentparental consentparticipation reason
Identifiers
PMID35107836
PMCPMC9169212
OpenAlexW4210738328
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