{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,9]],"date-time":"2026-08-09T12:48:06Z","timestamp":1786279686951,"version":"build-2736575974"},"reference-count":18,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T00:00:00Z","timestamp":1768176000000},"content-version":"vor","delay-in-days":11,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T00:00:00Z","timestamp":1767225600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100001673","name":"Fondation J\u00e9r\u00f4me Lejeune","doi-asserted-by":"publisher","award":["2061"],"award-info":[{"award-number":["2061"]}],"id":[{"id":"10.13039\/501100001673","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["R61 HD115161"],"award-info":[{"award-number":["R61 HD115161"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>This cross\u2010national study aimed to investigate and identify the motivations that drive parents of children with Down syndrome (DS) towards or away from participating in research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Participants were 33 parents of children with DS who took part in nine focus groups in the United States and in Italy. Answers to questions regarding motivation for research participation were transcribed and then analyzed using ATLAS.ti.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Six themes emerged regarding parent motivation: (a) Increasing parent knowledge; (b) Interest in a specific research topic; (c) Opportunities to receive support; (d) Logistical accessibility; (e) To support the DS community; and (f) To create a more inclusive society. \u2018Interest in a specific research topic\u2019 and \u2018Logistical accessibility\u2019 emerged as the main motivating factors cross\u2010culturally. Only subtle differences emerged between the two countries.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Results of this work can inform the alignment of future DS research with community and stakeholder priorities and values.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jar.70178","type":"journal-article","created":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T23:29:15Z","timestamp":1768260555000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["What Motivates Parents of Young Children With Down Syndrome to Participate in Research: A Focus Group Analysis"],"prefix":"10.1111","volume":"39","author":[{"given":"Benedetta","family":"Ceci","sequence":"first","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madison M.","family":"Walsh","sequence":"additional","affiliation":[{"name":"Department of Human Development &amp; Family Studies Colorado State University  Fort Collins Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-3624-1304","authenticated-orcid":false,"given":"Sara","family":"Colaianni","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miranda E.","family":"Pinks","sequence":"additional","affiliation":[{"name":"Department of Human Development &amp; Family Studies Colorado State University  Fort Collins Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6565-7500","authenticated-orcid":false,"given":"Sara","family":"Onnivello","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-2166-6166","authenticated-orcid":false,"given":"Kaylyn","family":"Van Deusen","sequence":"additional","affiliation":[{"name":"Department of Human Development &amp; Family Studies Colorado State University  Fort Collins Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Pulina","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chiara","family":"Marcolin","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1606-6157","authenticated-orcid":false,"given":"Bethany A.","family":"Gray","sequence":"additional","affiliation":[{"name":"Department Clinical Psychology Colorado State University  Fort Collins Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisa","family":"Rossi","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erika","family":"Lupati","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margherita","family":"Pietrobon","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessandra","family":"Tom\u00e8","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6208-456X","authenticated-orcid":false,"given":"Deborah J.","family":"Fidler","sequence":"additional","affiliation":[{"name":"Department of Human Development &amp; Family Studies Colorado State University  Fort Collins Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2470-6019","authenticated-orcid":false,"given":"Silvia","family":"Lanfranchi","sequence":"additional","affiliation":[{"name":"Department of Developmental Psychology and Socialization University of Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,1,12]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016\u20104127"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572\u2010019\u20100143\u20107"},{"key":"e_1_2_14_4_1","unstructured":"ATLAS.ti.2021.\u201cATLAS.ti Web (Version 5.8.0) [Web Application].\u201dATLAS.ti Scientific Software Development GmbH.https:\/\/atlasti.com."},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.32081"},{"key":"e_1_2_14_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013\u20101592"},{"key":"e_1_2_14_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/1366825031000147120"},{"key":"e_1_2_14_8_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15327922PAR0104_3"},{"key":"e_1_2_14_9_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2009.170506"},{"key":"e_1_2_14_10_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev.publhealth.19.1.173"},{"key":"e_1_2_14_11_1","doi-asserted-by":"publisher","DOI":"10.1037\/10518-189"},{"key":"e_1_2_14_12_1","doi-asserted-by":"crossref","unstructured":"Menon A. B.Cohn S. R.Dager et\u00a0al.2025.Capturing Attitudes Towards Research and Data Sharing in Down Syndrome (Cards\u2010Ds): Piloting a Novel Parent\u2010Report Measure.","DOI":"10.2139\/ssrn.5352837"},{"key":"e_1_2_14_13_1","unstructured":"National Institutes of Health.2021.\u201cINCLUDE Project\/Down Syndrome Research Plan.\u201dhttps:\/\/www.nih.gov\/include\u2010project\/include\u2010project\u2010down\u2010syndrome\u2010ds\u2010research\u2010plan."},{"key":"e_1_2_14_14_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-017-0111-x"},{"key":"e_1_2_14_15_1","first-page":"157","volume-title":"International Review of Research in Developmental Disabilities","author":"Riggs N. 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