Siegel David A, Durbin Eric B, Pollock Brad H, Grimes Allison, Ji Lingyun, Alonzo Todd A, Vargas Sarah L, Huang Bin, McDowell Jaclyn R, Lycan Ellen, Ransdell Peter, Tai Eric, Roth Michael E, Freyer David R
Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA.
Kentucky Cancer Registry, Markey Cancer Center, University of Kentucky, Lexington, KY.
JCO Oncol Pract. 2024 May;20(5):631-642. doi: 10.1200/OP.23.00325. Epub 2024 Jan 9.
PURPOSE: Database linkage between cancer registries and clinical trial consortia has the potential to elucidate referral patterns of children and adolescents with newly diagnosed cancer, including enrollment into cancer clinical trials. This study's primary objective was to assess the feasibility of this linkage approach. METHODS: Patients younger than 20 years diagnosed with incident cancer during 2012-2017 in the Kentucky Cancer Registry (KCR) were linked with patients enrolled in a Children's Oncology Group (COG) study. Matched patients between databases were described by sex, age, race and ethnicity, geographical location when diagnosed, and cancer type. Logistic regression modeling identified factors associated with COG study enrollment. Timeliness of patient identification by KCR was reported through the Centers for Disease Control and Prevention's Early Case Capture (ECC) program. RESULTS: Of 1,357 patients reported to KCR, 47% were determined by matching to be enrolled in a COG study. Patients had greater odds of enrollment if they were age 0-4 years ( 15-19 years), reported from a COG-affiliated institution, and had renal cancer, neuroblastoma, or leukemia. Patients had lower odds of enrollment if Hispanic ( non-Hispanic White) or had epithelial (eg, thyroid, melanoma) cancer. Most (59%) patients were reported to KCR within 10 days of pathologic diagnosis. CONCLUSION: Linkage of clinical trial data with cancer registries is a feasible approach for tracking patient referral and clinical trial enrollment patterns. Adolescents had lower enrollment compared with younger age groups, independent of cancer type. Population-based early case capture could guide interventions designed to increase cancer clinical trial enrollment.
目的:癌症登记处与临床试验联盟之间的数据库链接有潜力阐明新诊断癌症的儿童和青少年的转诊模式,包括癌症临床试验的入组情况。本研究的主要目的是评估这种链接方法的可行性。 方法:将2012年至2017年在肯塔基癌症登记处(KCR)诊断为新发癌症的20岁以下患者与参加儿童肿瘤学组(COG)研究的患者进行链接。通过性别、年龄、种族和民族、诊断时的地理位置以及癌症类型对数据库之间匹配的患者进行描述。逻辑回归模型确定与COG研究入组相关的因素。通过疾病控制和预防中心的早期病例捕获(ECC)计划报告KCR识别患者的及时性。 结果:在向KCR报告的1357名患者中,47%经匹配确定参加了COG研究。年龄在0至4岁(15至19岁)、来自COG附属机构且患有肾癌、神经母细胞瘤或白血病的患者入组几率更高。西班牙裔(非西班牙裔白人)或患有上皮性癌症(如甲状腺癌、黑色素瘤)的患者入组几率较低。大多数(59%)患者在病理诊断后10天内报告给KCR。 结论:将临床试验数据与癌症登记处链接是追踪患者转诊和临床试验入组模式的可行方法。与较年轻年龄组相比,青少年入组率较低,与癌症类型无关。基于人群的早期病例捕获可指导旨在增加癌症临床试验入组的干预措施。
Cochrane Database Syst Rev. 2017-6-6
Health Technol Assess. 2001
Cochrane Database Syst Rev. 2013-4-30
Cochrane Database Syst Rev. 2022-5-20
J Natl Cancer Inst. 2023-11-8
Pediatr Blood Cancer. 2022-11
JCO Clin Cancer Inform. 2021-9
Semin Oncol. 2020-2-29
Cancer Epidemiol Biomarkers Prev. 2020-4
J Registry Manag. 2019