Linking population-based cohorts with cancer registries in LMIC: a case study and lessons learnt in India.

Linking population-based cohorts with cancer registries in LMIC: a case study and lessons learnt in India.
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DOI:
10.1136/bmjopen-2022-068644
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发表时间:
2023-03-06
期刊:
影响因子:
2.9
通讯作者:
--
中科院分区:
医学3区
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--
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在资源有限的环境中,癌症流行病学研究通常依赖于自我报告的诊断。为了测试更系统的替代方法,我们评估了将队列与癌症登记联系起来的可行性。在印度钦奈的一个基于人群的队列与当地基于人群的癌症登记处之间进行数据链接。来自钦奈的南亚心脏代谢风险降低中心(CARRS)队列参与者(N=11 772)的数据集与1982-2015年期间的癌症登记数据集(N=140 986)相关联。Match*Pro是一种概率记录关联软件,用于计算机化关联,然后手动审查高分记录。用于关联的变量包括参与者姓名、性别、年龄、地址、邮政索引号以及父亲和配偶的姓名。2010年至2015年以及1982年至2015年的登记记录分别代表了事件和所有(事件和流行)病例。自我报告与基于登记册的查明之间的一致程度表示为两个数据集中发现的案件占每个来源独立查明的案件的比例。在11772名队列参与者中,有52例自报癌症病例,但有5例误报。在其余47例合格的自我报告病例(事件和流行)中,37例(79%)经登记研究关联确认。在29例自我报告的癌症事件中,25例(86%)是在登记处发现的。登记联系还确定了24个以前没有报告的癌症;其中12个是偶发病例。最近几年(2014-2015年),这种联系的可能性更高。尽管在缺乏唯一标识符的情况下,本研究中的关联变量具有有限的区分力,但相当大比例的自我报告病例在登记研究中通过关联得到确认。更重要的是,这些联系还发现了许多以前未报告的案件。这些发现提供了新的见解,可以为低收入和中等收入国家未来的癌症监测和研究提供信息。
In resource-constrained settings, cancer epidemiology research typically relies on self-reported diagnoses. To test a more systematic alternative approach, we assessed the feasibility of linking a cohort with a cancer registry. Data linkage was performed between a population-based cohort in Chennai, India, with a local population-based cancer registry. Data set of Centre for Cardiometabolic Risk Reduction in South-Asia (CARRS) cohort participants (N=11 772) from Chennai was linked with the cancer registry data set for the period 1982–2015 (N=140 986). Match*Pro, a probabilistic record linkage software, was used for computerised linkages followed by manual review of high scoring records. The variables used for linkage included participant name, gender, age, address, Postal Index Number and father’s and spouse’s name. Registry records between 2010 and 2015 and between 1982 and 2015, respectively, represented incident and all (both incident and prevalent) cases. The extent of agreement between self-reports and registry-based ascertainment was expressed as the proportion of cases found in both data sets among cases identified independently in each source. There were 52 self-reported cancer cases among 11 772 cohort participants, but 5 cases were misreported. Of the remaining 47 eligible self-reported cases (incident and prevalent), 37 (79%) were confirmed by registry linkage. Among 29 self-reported incident cancers, 25 (86%) were found in the registry. Registry linkage also identified 24 previously not reported cancers; 12 of those were incident cases. The likelihood of linkage was higher in more recent years (2014–2015). Although linkage variables in this study had limited discriminatory power in the absence of a unique identifier, an appreciable proportion of self-reported cases were confirmed in the registry via linkages. More importantly, the linkages also identified many previously unreported cases. These findings offer new insights that can inform future cancer surveillance and research in low-income and middle-income countries.
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