{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:10:43Z","timestamp":1787019043598,"version":"build-2736575974"},"reference-count":38,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000072","name":"National Institute of Dental and Craniofacial Research","doi-asserted-by":"publisher","award":["3R01DE029510-03"],"award-info":[{"award-number":["3R01DE029510-03"]}],"id":[{"id":"10.13039\/100000072","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative interview study of research participants\u2019 attitudes about data sharing.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>One-to-one interviews via web conferencing.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patients, Participants<\/jats:title>\n                    <jats:p>Adults (n\u2009=\u20097) and adolescents (n\u2009=\u20098) with craniofacial microsomia and caregivers (n\u2009=\u200920) of children with craniofacial microsomia who previously participated in clinical craniofacial research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interventions<\/jats:title>\n                    <jats:p>Semistructured interview guide addressing 4 main topics: (1) expectations about data collection and sharing; (2) preferences and limitations for data sharing; (3) consent\/assent language; and (4) gaps and future needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main Outcome Measure(s)<\/jats:title>\n                    <jats:p>We iteratively developed a qualitative codebook based on inductive interview transcript review and conducted a thematic analysis of coded data.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We identified 5 themes within participants\u2019 descriptions of their attitudes about data sharing: (1) participants hope that research participation and data sharing will advance science for the benefit of the craniofacial community; (2) sharing images is broadly recognized as important for craniofacial research but raises discomfort for some; (3) participants generally view broad data sharing and use positively but raise concerns focused on harm to the craniofacial community; (4) trustworthy researchers and data protections provide reassurance for sharing data; and (5) decisions about pediatric data sharing are complex in the context of developing autonomy.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>These findings illustrate ethical complexities for data sharing in clinical craniofacial research related to balancing community-oriented benefits and risks, providing control over sharing images, ensuring researcher trustworthiness, and respecting a child's future autonomy interests.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656251369658","type":"journal-article","created":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T11:29:01Z","timestamp":1756726141000},"page":"2319-2329","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers"],"prefix":"10.1177","volume":"63","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2862-7601","authenticated-orcid":false,"given":"Stephanie A.","family":"Kraft","sequence":"first","affiliation":[{"name":"Geisinger College of Health Sciences"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1379-8253","authenticated-orcid":false,"given":"Laura","family":"Stueckle","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-0043-7978","authenticated-orcid":false,"given":"Elsa","family":"Ayala","sequence":"additional","affiliation":[{"name":"Seattle Children's Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-9067-9107","authenticated-orcid":false,"given":"Abril","family":"Beretta","sequence":"additional","affiliation":[{"name":"Seattle Children's Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2178-7730","authenticated-orcid":false,"given":"Carrie L.","family":"Heike","sequence":"additional","affiliation":[{"name":"Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA"},{"name":"Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,9,1]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0000000000006691"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.bjps.2022.02.058"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.xgen.2021.100029"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41467-018-05227-z"},{"key":"e_1_3_3_6_2","unstructured":"NOT-OD-21-013: final NIH policy for data management and sharing. 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