{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T13:57:29Z","timestamp":1790776649920,"version":"4.1.0"},"reference-count":37,"publisher":"SAGE Publications","issue":"9","license":[{"start":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T00:00:00Z","timestamp":1764633600000},"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":[[2026,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To propose recommendations for ethical, participant-centered clinical data sharing in craniofacial research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Series of deliberative multidisciplinary expert working group meetings to develop recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Two 1-h virtual meetings; one all-day hybrid meeting.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patients, Participants<\/jats:title>\n                    <jats:p>\n                      Working group (\n                      <jats:italic toggle=\"yes\">n<\/jats:italic>\n                      \u2009=\u200916) comprised individuals with expertise in craniofacial research, bioethics, and patient\/caregiver advocacy, as well as lived experience of craniofacial conditions.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interventions<\/jats:title>\n                    <jats:p>The working group first reviewed prior empirical data about research participant attitudes about data sharing then drafted initial recommendations that were built on the data and the group's collective expertise. Recommendations were iteratively refined until the group agreed upon their final presentation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main outcome measures<\/jats:title>\n                    <jats:p>Working group endorsement of recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The working group produced 16 recommendations that addressed considerations for primary and secondary researchers, data repositories, and the craniofacial research community across 5 domains. These domains address: (1) research team communication with participants, (2) data collection and protections, (3) data governance, (4) education for researchers, and (5) remaining research gaps. Recommendations highlight the importance of prioritizing the experiences of those with lived experience of craniofacial conditions in decision-making about data sharing, navigating varied perspectives on privacy protections for facial images, and striving to implement trustworthy data sharing and governance practices.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This summary of recommendations offers guidance for the craniofacial research community to advance participant-centered clinical data sharing practices. Ethical data sharing that accounts for participants\u2019 experiences and values has potential to advance scientific research and improve outcomes for individuals with craniofacial conditions, their families, and their communities.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656251398916","type":"journal-article","created":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T18:59:42Z","timestamp":1764701982000},"page":"2938-2947","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group"],"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"}]},{"given":"Laura","family":"Stueckle","sequence":"additional","affiliation":[{"name":"Seattle Children's Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen R.","family":"Bogart","sequence":"additional","affiliation":[{"name":"Oregon State University"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0040-6396","authenticated-orcid":false,"given":"Canice","family":"Crerand","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital"},{"name":"Departments of Pediatrics and Plastic Surgery, The Ohio State University College of Medicine, Columbus, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0345-824X","authenticated-orcid":false,"given":"Kelly N.","family":"Evans","sequence":"additional","affiliation":[{"name":"Seattle Children's Research Institute"},{"name":"University of Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie M.","family":"Fullerton","sequence":"additional","affiliation":[{"name":"University of Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2029-5873","authenticated-orcid":false,"given":"Alexis","family":"Johns","sequence":"additional","affiliation":[{"name":"Children's Hospital Los Angeles"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erica","family":"Klauber","sequence":"additional","affiliation":[{"name":"Children's Craniofacial Association, Dallas, TX, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6017-4529","authenticated-orcid":false,"given":"Sara L.","family":"Kinter","sequence":"additional","affiliation":[{"name":"University of Washington"},{"name":"Seattle Children's Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7767-7816","authenticated-orcid":false,"given":"Christy M.","family":"McKinney","sequence":"additional","affiliation":[{"name":"University of Washington"},{"name":"Seattle Children's Research Institute"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Mendillo","sequence":"additional","affiliation":[{"name":"American Cleft Palate Craniofacial Association"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexis","family":"Prepotente","sequence":"additional","affiliation":[{"name":"University of Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Schefer","sequence":"additional","affiliation":[{"name":"RareAction Network, National Organization for Rare Disorders"},{"name":"AdvocateAngel, Rainier, WA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1285-691X","authenticated-orcid":false,"given":"Nicola M.","family":"Stock","sequence":"additional","affiliation":[{"name":"Centre for Appearance Research, University of the West of England, Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Tumblin","sequence":"additional","affiliation":[{"name":"Ear Community"}],"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":"Seattle Children's Research Institute"},{"name":"University of Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,12,2]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41467-018-05227-z"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(10)62234-9"},{"key":"e_1_3_3_4_2","doi-asserted-by":"crossref","unstructured":"Kraft SA Stueckle L Ayala E Beretta A Heike CL. 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