Advancing breast cancer research through real-world data from the Singapore Joint Breast Cancer Registry

F.Y. Wong , B.J.G. Chua , R. Dent , M. Hartman , G.H. Lim , S.Z. Lim , S.H. Lim , J.M. Li , J.Y.Y. Ngeow , W.S. Ong , P. Nitar , M. Preetha , Y.R. Sim , E.Y. Tan , H.Q. Tan , T.J. Tan , B.K-T. Tan , Q.T. Tan , S.Y. Tan , S-M. Tan , Zewen Zhang
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Abstract

Background

The Joint Breast Cancer Registry (JBCR) was established to collect comprehensive real-world data on patients with breast cancer treated across multiple institutions in Singapore. We present an overview of the registry, its structure, processes, and research findings.

Patients and methods

JBCR includes all breast cancer patients aged 21 years old, treated in Singapore from 1980 onwards. Information on patient demographics, tumour characteristics, treatment, toxicity, and clinical outcomes is collected. We integrate data collection into clinical workflows, use automation, such as text-mining, and implement quality control processes to improve the accuracy and completeness of the registry. We further describe data security and governance processes that safeguard patients privacy and allow for data sharing for research purposes.

Results

A diverse cohort of over 35 000 patients have been enrolled in the registry from participating institutions across Singapore. The median age at diagnosis is 54 years with a median follow-up time of 7.6 years. About a quarter of the 8883 deaths were attributed to breast cancer. Analyses of JBCR data have revealed findings such as the impact of tumour subtypes on survival, disparities in treatment responses, and the novel role of radiomics in predicting chemotherapy response. We have also identified significant ethnic and socioeconomic disparities in breast cancer outcomes, emphasizing the need for targeted interventions.

Conclusion

By leveraging real-world data, JBCR provides insights into the treatment trends and long-term outcomes of breast cancer in Singapore. We provide value to various stakeholders in clinical care, research, and policy-making. Future initiatives seek to address current limitations, including expanding the collection of genetic and molecular data, increasing patient-reported quality-of-life measures, and enhancing international collaborations.
通过新加坡联合乳腺癌登记处的真实数据推进乳腺癌研究
联合乳腺癌登记处(JBCR)的建立是为了收集新加坡多家机构接受乳腺癌治疗的患者的全面真实数据。我们提出了注册表的概述,它的结构,过程和研究成果。患者和方法sjbcr包括1980年以来在新加坡接受治疗的所有年龄≥21岁的乳腺癌患者。收集有关患者人口统计学、肿瘤特征、治疗、毒性和临床结果的信息。我们将数据收集整合到临床工作流程中,使用自动化,如文本挖掘,并实施质量控制流程,以提高注册表的准确性和完整性。我们进一步描述了数据安全和治理流程,以保护患者的隐私,并允许为研究目的共享数据。结果来自新加坡各参与机构的35000多名患者已登记入组。诊断时的中位年龄为54岁,中位随访时间为7.6年。在8883例死亡中,约有四分之一的人死于乳腺癌。对JBCR数据的分析揭示了诸如肿瘤亚型对生存的影响、治疗反应的差异以及放射组学在预测化疗反应中的新作用等发现。我们还发现了乳腺癌结果中显著的种族和社会经济差异,强调了有针对性干预的必要性。通过利用真实世界的数据,JBCR提供了对新加坡乳腺癌治疗趋势和长期结果的见解。我们在临床护理、研究和决策方面为各种利益相关者提供价值。未来的举措寻求解决当前的局限性,包括扩大遗传和分子数据的收集,增加患者报告的生活质量措施,以及加强国际合作。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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