School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Certification, German Cancer Society-Krebsgesellschaft, Berlin, Germany.
J Am Med Inform Assoc. 2022 Apr 13;29(5):964-969. doi: 10.1093/jamia/ocab281.
Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.
自 2017 年以来,TrueNTH 全球注册中心(TNGR)通过汇集来自 13 个国家的医疗机构的数据,旨在改善局部前列腺癌患者的治疗效果。随着 TNGR 的成熟,有必要对现有流程和文件进行系统评估,以评估该注册中心是否按预期运行。主要支持文件:方案和数据字典,在 10 个月的时间里,由一个国际工作组在一系列会议上进行了全面审查。与此同时,还针对基准质量护理报告,与当地机构进行了单独磋商。改进的四个共识领域包括:更新操作定义、评估招募流程、完善数据元素,以及提高数据质量和报告。提出的建议来自我们在运营国际注册中心方面的集体经验和积累的知识。这些建议可以很容易地推广到临床注册中心以外的其他与健康相关的报告计划。