{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,29]],"date-time":"2026-06-29T17:44:27Z","timestamp":1782755067029,"version":"3.54.5"},"reference-count":35,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T00:00:00Z","timestamp":1782518400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T00:00:00Z","timestamp":1782518400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"University of Toronto Vision Science Research Program Scholarship"},{"name":"SickKids Ophthalmology Research Fund"},{"DOI":"10.13039\/100000090","name":"Congressionally Directed Medical Research Programs","doi-asserted-by":"crossref","award":["W81XWH-22-1-0535"],"award-info":[{"award-number":["W81XWH-22-1-0535"]}],"id":[{"id":"10.13039\/100000090","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Biopreservation and Biobanking"],"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The Kids Eye Biobank collects biospecimens, images, and clinical data from pediatric ophthalmology patients for future research use. A broad informed consent model is used; participants have opt-in choices, which include the creation of cell lines\/organoids, use of whole genome sequencing (WGS) data, sharing resources with industry, and receiving future communications. This study aimed to characterize participant consent preferences and investigate associations between participant characteristics and their consent preferences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Participant demographics, diagnosis, and consent preferences were abstracted from the Kids Eye Biobank\u2019s records. Variables were analyzed using descriptive statistics and chi-square test. Patient engagement methods were used throughout the study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      Between January 2020 and April 2025, 391 patients were approached and 342 (87%) enrolled. Of the enrolled participants, 265 (78%) had a substitute decision-maker, and 205 (60%) were diagnosed with a malignant neoplasm affecting the eye. Demographic data were available for 273 (80%) participants; 50% were boys\/men, 48% identified as belonging to a visible racial minority, and 67% reported a religious affiliation. Participants with malignant neoplasms opted in more to the use of WGS data and to the sharing of WGS data and cell lines\/organoids with industry (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      &lt; 0.05). Participants belonging to a visible racial minority opted in less to the generation of cell lines\/organoids (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      &lt; 0.05) and to receiving communications about future research (\n                      <jats:italic toggle=\"yes\">p<\/jats:italic>\n                      = 0.002) compared with White participants.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Informed consent preferences may be influenced by participant diagnosis and\/or race. These findings may help the Kids Eye Biobank tailor its communication strategies and diversify its participant population.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/19475535261448800","type":"journal-article","created":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T08:53:53Z","timestamp":1782550433000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Demographic and Clinical Correlates of Consent in a Pediatric Ophthalmology Biobank"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0009-0003-6619-5365","authenticated-orcid":false,"given":"Frances","family":"Argento","sequence":"first","affiliation":[{"name":"Department of Ophthalmology &amp; Vision Sciences, The Hospital for Sick Children, Toronto, Canada."},{"name":"Child Health Evaluative Sciences Program and the Centre for Global Child Health, SickKids Research Institute, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mackenzie","family":"Devlin","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Serge","family":"Dorna","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9606-6298","authenticated-orcid":false,"given":"Kaitlyn","family":"Flegg","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology &amp; Vision Sciences, The Hospital for Sick Children, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1354-2920","authenticated-orcid":false,"given":"Ashwin","family":"Mallipatna","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology &amp; Vision Sciences, The Hospital for Sick Children, Toronto, Canada."},{"name":"Department of Ophthalmology &amp; Vision Sciences, University of Toronto, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-1213-024X","authenticated-orcid":false,"given":"Michelle","family":"Prunier","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tim","family":"Regan","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ivana","family":"Ristevski","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lynn","family":"Tarabey","sequence":"additional","affiliation":[{"name":"Patient Partner, Kids Eye Biobank, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1164-2001","authenticated-orcid":false,"given":"Helen","family":"Dimaras","sequence":"additional","affiliation":[{"name":"Department of Ophthalmology &amp; Vision Sciences, The Hospital for Sick Children, Toronto, Canada."},{"name":"Child Health Evaluative Sciences Program and the Centre for Global Child Health, SickKids Research Institute, Toronto, Canada."},{"name":"Department of Ophthalmology &amp; Vision Sciences, University of Toronto, Toronto, Canada."},{"name":"Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,6,27]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-20579-3_5"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12967-019-1922-3"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1089\/bio.2014.0032"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-017-0308-6"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1089\/bio.2020.29071.djc"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.trecan.2025.01.004"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-023-04818-3"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2022.917615"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-019-0414-6"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-0687"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1159\/000362091"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.9778\/cmajo.20190221"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-020-00515-0"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcjo.2024.06.009"},{"key":"e_1_3_3_16_2","unstructured":"Canadian Institutes for Health Research. Strategy for Patient-Oriented Research\u2014Patient Engagement Framework. 2019. Available from: https:\/\/cihr-irsc.gc.ca\/e\/48413.html [Last accessed: February20 2025]."},{"key":"e_1_3_3_17_2","unstructured":"Government of Canada. Health Care Consent Act. 1996. Available from: https:\/\/www.justice.gc.ca\/eng\/rp-pr\/other-autre\/article12\/p3a.html [Last accessed: August12 2025]."},{"key":"e_1_3_3_18_2","unstructured":"Statistics Canada. Visible Minority and Population Group Reference Guide. 2023. Available from: https:\/\/www12.statcan.gc.ca\/census-recensement\/2021\/ref\/98-500\/006\/98-500-x2021006-eng.cfm [Last accessed: August12 2025]."},{"key":"e_1_3_3_19_2","unstructured":"Government of Canada. Employment Equity Act. 1995. Available from: https:\/\/laws-lois.justice.gc.ca\/eng\/acts\/E-5.401\/index.html [Last accessed: September15 2025]."},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.3390\/vaccines9121445"},{"key":"e_1_3_3_21_2","unstructured":"ICD 10th Revision System. 2025. Available from: https:\/\/www.icd10data.com\/ICD10CM\/Codes [Last accessed: August12 2025]."},{"key":"e_1_3_3_22_2","unstructured":"IBM. International Business Machines. Statistical Package for the Social Sciences. Available from: https:\/\/www.ibm.com\/spss"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12885-024-12145-5"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1093\/jlb\/lst004"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1159\/000375441"},{"key":"e_1_3_3_26_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.exer.2024.110068"},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.12877"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-011-0052-2"},{"key":"e_1_3_3_29_2","doi-asserted-by":"publisher","DOI":"10.1097\/iio.0000000000000555"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2020.535116"},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-058552"},{"key":"e_1_3_3_32_2","unstructured":"Statistics Canada. Census of Population. 2021. Available from: https:\/\/www12.statcan.gc.ca\/census-recensement\/2021\/dp-pd\/sip\/details\/page.cfm?Lang=E&PoiId=9&Dguid=2021A000011124 [Last accessed: July25 2025]."},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.gim.2022.04.009"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1037\/dev0001623"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1080\/23294515.2018.1505783"},{"key":"e_1_3_3_36_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10943-023-01932-2"}],"container-title":["Biopreservation and Biobanking"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/19475535261448800","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/19475535261448800","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/19475535261448800","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,29]],"date-time":"2026-06-29T16:53:07Z","timestamp":1782751987000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/19475535261448800"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,27]]},"references-count":35,"alternative-id":["10.1177\/19475535261448800"],"URL":"https:\/\/doi.org\/10.1177\/19475535261448800","relation":{},"ISSN":["1947-5535","1947-5543"],"issn-type":[{"value":"1947-5535","type":"print"},{"value":"1947-5543","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,27]]},"article-number":"19475535261448800"}}