{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T19:23:24Z","timestamp":1775071404329,"version":"3.50.1"},"reference-count":39,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2024,9,5]],"date-time":"2024-09-05T00:00:00Z","timestamp":1725494400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100005189","name":"Leukemia and Lymphoma Society","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100005189","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Increasing representation in clinical trials is a priority for the National Cancer Institute and Children's Oncology Group (COG). Our survey of COG\u2010affiliated institutions revealed that many sites have insufficient processes and resources to enroll children whose parents use languages other than English (LOE). We describe reported barriers and facilitators to enrolling children in clinical trials when parents use LOE and propose opportunities for improvement.<\/jats:p><\/jats:sec><jats:sec><jats:title>Procedures<\/jats:title><jats:p>We sent a 20\u2010item survey to COG\u2010affiliated institutions. Five items allowed respondents to expand on replies to questions about (a) local institutional review board (IRB) requirements regarding translation of consent documents, (b) contributors to provider discomfort consenting parents who use LOE, (c) available language services and resources, and (d) barriers to enrolling children whose parents use LOE or offer ideas about approaches to improvements. Two pairs of researchers independently coded free\u2010text responses and compared results for concordance.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 139 (<jats:italic>N<\/jats:italic>\u00a0=\u00a0230; 60%) institutions returned the survey. Respondents were mainly physician principal investigators (<jats:italic>n<\/jats:italic>\u00a0=\u00a079\/139; 57%) at the United States sites (<jats:italic>n<\/jats:italic>\u00a0=\u00a0118\/139; 85%) serving less than 100 newly diagnosed children per year (<jats:italic>n<\/jats:italic>\u00a0=\u00a099\/139, 71%). They described challenges at multiple levels. Proposed approaches to improvements included centralized provision of translated materials and video educational materials in various languages, and collaborating with IRBs on regulatory processes that protect families and facilitate equitable clinical trial access.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Clinical trial consortia, such as COG, face challenges in enrolling representative samples. Further research is required to design and implement multilevel interventions to ensure equitable access for all, regardless of language used, and mitigate disparate research participation.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pbc.31321","type":"journal-article","created":{"date-parts":[[2024,9,6]],"date-time":"2024-09-06T04:48:41Z","timestamp":1725598121000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Multilevel challenges to equitable inclusion of children in trials when parents use languages other than English: A qualitative report from Children's Oncology Group's Diversity and Health Disparities Committee Language Equity Working Group"],"prefix":"10.1002","volume":"71","author":[{"given":"Sheila Judge","family":"Santacroce","sequence":"first","affiliation":[{"name":"University of North Carolina at Chapel Hill School of Nursing Chapel Hill North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4058-1586","authenticated-orcid":false,"given":"Melissa P.","family":"Beauchemin","sequence":"additional","affiliation":[{"name":"Columbia University Mailman School of Nursing New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wendy","family":"Pelletier","sequence":"additional","affiliation":[{"name":"University of Calgary Calgary Alberta Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joanna M.","family":"Robles","sequence":"additional","affiliation":[{"name":"Wake Forest University School of Medicine Winston\u2010Salem North Carolina USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5319-3852","authenticated-orcid":false,"given":"Jenny","family":"Ruiz","sequence":"additional","affiliation":[{"name":"University of Pittsburgh School of Medicine Pittsburgh Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lindsay J.","family":"Blazin","sequence":"additional","affiliation":[{"name":"Indiana University School of Medicine Indianapolis Indiana USA"},{"name":"Riley Children's Health Indianapolis Indiana USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0588-1532","authenticated-orcid":false,"given":"Paula","family":"Aristizabal","sequence":"additional","affiliation":[{"name":"University of California San Diego Moores Cancer Center\/University of California San Diego Department of Pediatrics Rady Children's Hospital San Diego San Diego California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7385-7561","authenticated-orcid":false,"given":"Manuela","family":"Orjuela\u2010Grimm","sequence":"additional","affiliation":[{"name":"New York Presbyterian\/Columbia University Medical Center New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0164-1590","authenticated-orcid":false,"given":"Anurekha G.","family":"Hall","sequence":"additional","affiliation":[{"name":"University of Washington Seattle Children's Hospital Seattle Washington USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3330-6754","authenticated-orcid":false,"given":"Justine","family":"Kahn","sequence":"additional","affiliation":[{"name":"New York Presbyterian\/Columbia University Medical Center New York New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cassie","family":"Kline","sequence":"additional","affiliation":[{"name":"Children's Hospital of Philadelphia Philadelphia Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alix E.","family":"Seif","sequence":"additional","affiliation":[{"name":"Children's Hospital of Philadelphia Philadelphia Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria C.","family":"Velez","sequence":"additional","affiliation":[{"name":"Children's Hospital New Orleans\/Louisiana State University Health Sciences Center New Orleans Louisiana USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9982-1594","authenticated-orcid":false,"given":"Lena E.","family":"Winestone","sequence":"additional","affiliation":[{"name":"Division of Allergy, Immunology &amp; BMT University of California San Francisco Benioff Children's Hospitals San Francisco California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2024,9,5]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.maypcpoqo.2023.09.003"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022\u2010058552"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10903\u2010021\u201001257\u2010w"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/hpeds.2022\u2010007014"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0230824"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.30569"},{"key":"e_1_2_10_8_1","unstructured":"Children in U.S. immigrant families.Migration Policy Institute. Accessed December 22 2023.https:\/\/www.migrationpolicy.org\/programs\/data\u2010hub\/us\u2010immigration\u2010trends#lep"},{"key":"e_1_2_10_9_1","unstructured":"While English and French are still the main languages spoken in Canada the country's linguistic diversity continues to grow.Statistique Canada;2022. Accessed June 26 2024.https:\/\/www150.statcan.gc.ca\/n1dailyquotidien\/220817\/dq220817a\u2010eng.htm"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2023.1096147"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbs.25472"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.2196\/44530"},{"key":"e_1_2_10_13_1","unstructured":"Healthy People 2030 Framework: social determinants of health.Office of Disease Prevention and Health Promotion. Accessed January 4 2024.https:\/\/health.gov\/healthypeople\/priority\u2010areas\/social\u2010determinants\u2010health"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1166\/1043454218810137"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12885\u2010022\u201009547\u20108"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.24028"},{"key":"e_1_2_10_17_1","unstructured":"Eliminate inequities\u2014National Cancer Plan.National Cancer Institute. Accessed December 22 2023.https:\/\/nationalcancerplan.cancer.gov\/goals\/eliminate\u2010inequities"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.30592"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1200\/EDBK_320499"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1177\/1043454218810141"},{"key":"e_1_2_10_21_1","unstructured":"Children's Oncology Group research collaborations.Children's Oncology Group. Accessed December 22 2023.https:\/\/www.childrensoncologygroup.org\/research\u2010collaborations"},{"key":"e_1_2_10_22_1","unstructured":"Translator vs. interpreter: what's the difference?American Translators Association. Accessed January 4 2024.https:\/\/www.atanet.org\/client\u2010assistance\/translator\u2010vs\u2010interpreter\/"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1093\/jncics\/pkae047"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/nur.21768"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08010"},{"key":"e_1_2_10_26_1","unstructured":"SajevaG Borrini\u2010FeyeabendG NiedbergerT.Meanings and more\u2026 Policy brief of the ICCA Consortium.ICCA Consortium in collaboration with Cenesta; November 25 2019. Accessed December 22 2023.https:\/\/www.iccaconsortium.org\/2019\/11\/25\/icca\u2010consortium\u2010policy\u2010brief\u2010no\u20107\u2010meanings\u2010and\u2010more\/"},{"key":"e_1_2_10_27_1","unstructured":"Consent from subjects with limited English proficiency (Short Form Consent): how does the process work?Children's Hospital of Philadelphia Research Institute; June 14 2022. Accessed July 9 2024.https:\/\/www.research.chop.edu\/services\/consent\u2010from\u2010subjects\u2010with\u2010limited\u2010english\u2010proficiency\u2010short\u2010form\u2010consent"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2023.46858"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbs.28023"},{"key":"e_1_2_10_30_1","unstructured":"Using a centralized IRB review process in multicenter clinical trials.Food & Drug Administration. Accessed July 9 2024.https:\/\/www.fda.gov\/regulatory\u2010information\/search\u2010fda\u2010guidance\u2010documents\/using\u2010centralized\u2010irb\u2010review\u2010process\u2010multicenter\u2010clinical\u2010trials"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.31486\/toj.19.0079"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022\u2010059804"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11912\u2010022\u201001239\u20107"},{"key":"e_1_2_10_34_1","unstructured":"Multicultural health services directory.NSW Government;2016. Accessed March 19 2024.https:\/\/www.mhcs.health.nsw.gov.au\/policiesandguidelines\/supportinfo\/pdf\/nsw\u2010multicultural\u2010health\u2010services\u2010directory"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.3200\/SCOP.145.4.405\u2010428"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1188\/1043454215611082"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.18865\/ed.32.1.61"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1177\/104345207311916"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010023\u201007268\u20102"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2019.0139"}],"container-title":["Pediatric Blood &amp; Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pbc.31321","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,27]],"date-time":"2025-05-27T13:52:37Z","timestamp":1748353957000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pbc.31321"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,5]]},"references-count":39,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2024,11]]}},"alternative-id":["10.1002\/pbc.31321"],"URL":"https:\/\/doi.org\/10.1002\/pbc.31321","archive":["Portico"],"relation":{},"ISSN":["1545-5009","1545-5017"],"issn-type":[{"value":"1545-5009","type":"print"},{"value":"1545-5017","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,5]]},"assertion":[{"value":"2024-07-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-08-28","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-09-05","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e31321"}}