{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,14]],"date-time":"2025-05-14T01:56:27Z","timestamp":1747187787514,"version":"3.40.5"},"reference-count":36,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2022,2,2]],"date-time":"2022-02-02T00:00:00Z","timestamp":1643760000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100010346","name":"University of Colorado Denver","doi-asserted-by":"publisher","award":["U01000748"],"award-info":[{"award-number":["U01000748"]}],"id":[{"id":"10.13039\/100010346","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007241","name":"Kaiser Foundation Research Institute","doi-asserted-by":"publisher","award":["U10DD000182","U01000752"],"award-info":[{"award-number":["U10DD000182","U01000752"]}],"id":[{"id":"10.13039\/100007241","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006920","name":"University of Pennsylvania","doi-asserted-by":"publisher","award":["U10DD000183","U01000746"],"award-info":[{"award-number":["U10DD000183","U01000746"]}],"id":[{"id":"10.13039\/100006920","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007880","name":"Johns Hopkins University","doi-asserted-by":"publisher","award":["U10DD000184","U01000749"],"award-info":[{"award-number":["U10DD000184","U01000749"]}],"id":[{"id":"10.13039\/100007880","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007890","name":"University of North Carolina at Chapel Hill","doi-asserted-by":"publisher","award":["U10DD000498","U10DD000901"],"award-info":[{"award-number":["U10DD000498","U10DD000901"]}],"id":[{"id":"10.13039\/100007890","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007709","name":"Michigan State University","doi-asserted-by":"publisher","award":["U01000750"],"award-info":[{"award-number":["U01000750"]}],"id":[{"id":"10.13039\/100007709","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Paediatric Perinatal Epid"],"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents\u2019 motivations to enrol children in observational studies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi\u2010site 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We included families of children, age 2\u20135\u00a0years, participating in SEED (<jats:italic>n<\/jats:italic>\u00a0=\u00a05696) during 2007\u20132016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non\u2010ASD 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\u2010effects models to evaluate associations of each reason with group and demographics, using POP as reference.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participants gave 1\u20135 reasons for participation (mean\u00a0=\u00a01.7, SD\u00a0=\u00a00.7). 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\u20133.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61\u20132.29) or suspected ASD (OR 3.67, 95% CI 2.99\u20134.50) and non\u2010ASD DD (OR 1.80, 95% CI 1.50\u20132.16) participants. Peripheral relationship with ASD\/DD had lower odds among all case groups.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We identified meaningful differences between groups in parent\u2010reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ppe.12861","type":"journal-article","created":{"date-parts":[[2022,2,2]],"date-time":"2022-02-02T14:29:10Z","timestamp":1643812150000},"page":"435-445","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?"],"prefix":"10.1111","volume":"36","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5264-4340","authenticated-orcid":false,"given":"Chyrise B.","family":"Bradley","sequence":"first","affiliation":[{"name":"Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amanda L.","family":"Tapia","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carolyn G.","family":"DiGuiseppi","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Colorado School of Public Health University of Colorado Anschutz Medical Campus  Aurora Colorado USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marti W.","family":"Kepner","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joy M.","family":"Kloetzer","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura A.","family":"Schieve","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa D.","family":"Wiggins","sequence":"additional","affiliation":[{"name":"National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention  Atlanta Georgia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gayle C.","family":"Windham","sequence":"additional","affiliation":[{"name":"California Department of Public Health Environmental Health Investigations Branch  Richmond California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9658-3743","authenticated-orcid":false,"given":"Julie L.","family":"Daniels","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill  Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,2,2]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00038-017-1032-z"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/1740774510392257"},{"key":"e_1_2_11_4_1","first-page":"31","article-title":"Reasons for participating in randomized controlled trials: conditional altruism and considerations for self","volume":"11","author":"McCann SK","year":"2010","journal-title":"BioMed 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