Department of Epidemiology and Preventive Medicine, Monash University, Clayton, Victoria, Australia.
Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
BMJ Open. 2022 Aug 29;12(8):e060907. doi: 10.1136/bmjopen-2022-060907.
Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New Zealand Lung Cancer Registry (ANZLCR) will be developed as a Clinical Quality Registry to monitor the safety, quality and effectiveness of lung cancer care in Australia and New Zealand.
Patient participants will include all adults >18 years of age with a new diagnosis of non-small-cell lung cancer (NSCLC), SCLC, thymoma or mesothelioma. The ANZLCR will register confirmed diagnoses using opt-out consent. Data will address key patient, disease, management processes and outcomes reported as clinical quality indicators. Electronic data collection facilitated by local data collectors and local, state and federal data linkage will enhance completeness and accuracy. Data will be stored and maintained in a secure web-based data platform overseen by registry management. Central governance with binational representation from consumers, patients and carers, governance, administration, health department, health policy bodies, university research and healthcare workers will provide project oversight.
The ANZLCR has received national ethics approval under the National Mutual Acceptance scheme. Data will be routinely reported to participating sites describing performance against measures of agreed best practice and nationally to stakeholders including federal, state and territory departments of health. Local, regional and (bi)national benchmarks, augmented with online dashboard indicator reporting will enable local targeting of quality improvement efforts.
肺癌是癌症死亡的主要原因,在澳大利亚和新西兰构成了最大的国家癌症疾病负担。区域报告指出,存在大量证据与实践之间的差距、对最佳实践的不合理偏离,以及治疗中心之间的护理过程和结果存在差异。澳大利亚和新西兰肺癌登记处(ANZLCR)将作为一个临床质量登记处开发,以监测澳大利亚和新西兰肺癌护理的安全性、质量和效果。
患者参与者将包括所有年龄在 18 岁以上、新诊断为非小细胞肺癌(NSCLC)、小细胞肺癌、胸腺瘤或间皮瘤的成年人。ANZLCR 将使用默认同意注册确认诊断。数据将涉及关键患者、疾病、管理过程和结果,作为临床质量指标报告。通过当地数据收集者以及当地、州和联邦数据链接进行电子数据收集,将提高完整性和准确性。数据将存储在一个安全的基于网络的数据平台中,并由登记处管理进行维护。中央治理采用来自消费者、患者和护理人员、治理、管理、卫生部门、卫生政策机构、大学研究和医疗保健工作者的双边代表,将为项目提供监督。
ANZLCR 已根据国家互认计划获得国家伦理批准。数据将定期报告给参与的站点,描述对商定最佳实践措施的绩效,并在全国范围内向利益相关者报告,包括联邦、州和地区卫生部门。本地、区域和(双边)基准,加上在线仪表板指标报告,将使当地能够有针对性地进行质量改进工作。