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Helmsley Charitable Trust","doi-asserted-by":"publisher","award":["#2002\u201004267"],"award-info":[{"award-number":["#2002\u201004267"]}],"id":[{"id":"10.13039\/100007028","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["JGH Open"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background and Aim<\/jats:title><jats:p>Crohn's Colitis Care, a structured, disease\u2010specific electronic medical record, is proven to promote more complete data capture in adult Inflammatory Bowel Disease care. This study aimed to determine whether similar effectiveness was seen in pediatrics.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Matched patient records from a hospital's standard electronic medical record (pre\u2010Crohn's Colitis Care) and those in Crohn's Colitis Care were retrospectively reviewed (12\u2009months each). The presence of disease\u2010specific data items per platform were compared (21 core, 5 age\u2010specific). Data are presented as percentage recorded (recorded items\/total eligible for age). Descriptive and statistical analytics were used.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Paired records were reviewed for 114 children, of whom 78 (68%) had Crohn's disease and 69 (61%) were male. Median age at diagnosis was 13.5\u2009years (IQR12.0\u201315.5), with mean disease duration 3.6\u2009years (\u00b12.4). Crohn's Colitis Care was more likely to capture 9 items: general wellbeing, stool urgency and frequency, disease duration, comorbidities, pubertal stage, sexual activity, alcohol and drug usage (each <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05). The standard platform was more likely to capture 4 items: liquid stools, phenotype, disease indices, and vaccinations (each <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05). Crohn's Colitis Care achieved more eligible data items recorded per patient (75.3% \u00b111.5 vs. 67.7%\u2009\u00b1\u20098.9; <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001). Item completion rate in both platforms inversely correlated with patient age (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Consistent with findings in adult care, Crohn's Colitis Care achieved more complete disease\u2010data capture in pediatrics compared to a standard platform. Given that not all items were better recorded in the structured platform, work to understand and address barriers is needed to optimize complete data capture for care and research.<\/jats:p><\/jats:sec>","DOI":"10.1002\/jgh3.70153","type":"journal-article","created":{"date-parts":[[2025,4,30]],"date-time":"2025-04-30T10:01:21Z","timestamp":1746007281000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Crohn's Colitis Care, a Disease\u2010Specific Electronic Medical Record, Enhances Data Capture in Pediatric Inflammatory Bowel Disease Care"],"prefix":"10.1002","volume":"9","author":[{"given":"Joseph Louis","family":"Pipicella","sequence":"first","affiliation":[{"name":"University of New South Wales, Medicine &amp; Health (South Western Sydney Clinical School)  Sydney New South Wales Australia"},{"name":"Ingham Institute for Applied Medical Research, Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group  Liverpool New South Wales Australia"},{"name":"Crohn's Colitis Cure  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shoma","family":"Dutt","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology The Children's Hospital at Westmead, Sydney Children's Hospitals Network  Westmead New South Wales Australia"},{"name":"The University of Sydney Children's Hospital Westmead Clinical School  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kunal","family":"Thacker","sequence":"additional","affiliation":[{"name":"Department of Gastroenterology The Children's Hospital at Westmead, Sydney Children's Hospitals Network  Westmead New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan Jane","family":"Connor","sequence":"additional","affiliation":[{"name":"University of New South Wales, Medicine &amp; Health (South Western Sydney Clinical School)  Sydney New South Wales Australia"},{"name":"Ingham Institute for Applied Medical Research, Gastroenterology, Hepatology and Inflammatory Bowel Disease Research Group  Liverpool New South Wales Australia"},{"name":"Crohn's Colitis Cure  Sydney New South Wales Australia"},{"name":"Liverpool Hospital Department of Gastroenterology and Hepatology  Liverpool New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane Mary","family":"Andrews","sequence":"additional","affiliation":[{"name":"Crohn's Colitis Cure  Sydney New South Wales Australia"},{"name":"Central Adelaide Local Health Network  Adelaide South Australia Australia"},{"name":"University of Adelaide, Faculty of Health Sciences  Adelaide South Australia Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9402-4959","authenticated-orcid":false,"given":"Angharad","family":"Vernon\u2010Roberts","sequence":"additional","affiliation":[{"name":"Department of Paediatrics University of Otago Christchurch  Christchurch New Zealand"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,4,30]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/ajg.2017.228"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/jgh.13050"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2019.01.002"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/1756284819860044"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1601\u20100825.2011.01811.x"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gastrohep.2024.502203"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.2174\/1574887117666220328125720"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPG.0000000000002842"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1590\u20108658(08)60539\u20103"},{"key":"e_1_2_11_11_1","unstructured":"S.Kahui S.Snively andM.Ternent \u201cReducing the Growing Burden of Inflammatory Bowel Disease in New Zealand \u201d [Internet] https:\/\/cdn.fld.nz\/uploads\/sites\/crohns\/files\/files\/IBD_\u2010_Burden_of_Disease.pdf."},{"key":"e_1_2_11_12_1","unstructured":"Crohn's & Colitis Australia \u201cAustralian IBD Standards. 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