PDF(Pubmed)
Abstract：
UNASSIGNED: Upper tract urothelial cancer (UTUC) lacks high-quality evidence to appraise current patterns of presentation, diagnosis, treatment and outcomes as a result of disease rarity and patient heterogeneity. Registries may overcome many of the challenges making clinical trials challenging in UTUC and provide answers to many of the clinical questions that afflict UTUC management. In this narrative review we aim to summarise the design of registries that have contributed to the UTUC literature, discuss their strengths and limitations and the future directions of registries in UTUC.
UNASSIGNED: Two independent reviewers conducted a search of the OVID MEDLINE database from July 2002-July 2022. Included articles were required to be published in peer reviewed journals and use registry-based methodology to report on UTUC. Search was limited by MeSH and key words and was limited to the English language.
UNASSIGNED: One hundred and forty-four articles were identified and included as reporting on UTUC from a registry-based methodology. Articles utilising registry-based data have substantially increased over the study period with the majority of articles arising from large generalised cancer databases in North America. There has been an increase in UTUC-specific registries in the previous five years that have offered the most granular, complete analysis and these will continue to report in the coming years. The majority of published data assessed epidemiological factors and compared outcomes of treatment modalities with a small proportion of articles focusing on prognostic nomograms and quality of life. Larger cancer registries that contribute the majority of the published analysis are likely subject to significant selection bias when comparing cohorts for treatment analysis and the need for prospective UTUC specific registries is apparent. Future directions include the potential for registry-based randomised controlled trials (RCTs) and clinical quality registries (CQR) that have the ability to change practice and improve care.
UNASSIGNED: The utilisation of registry-based methodology for analysis in UTUC has increased substantially over the last 20 years. In addition to the utilisation of large cancer registries, the creation of UTUC specific registries is likely to contribute the most granular, translatable data in diagnosis and management.
UNASSIGNED: Two independent reviewers conducted a search of the OVID MEDLINE database from July 2002-July 2022. Included articles were required to be published in peer reviewed journals and use registry-based methodology to report on UTUC. Search was limited by MeSH and key words and was limited to the English language.
UNASSIGNED: One hundred and forty-four articles were identified and included as reporting on UTUC from a registry-based methodology. Articles utilising registry-based data have substantially increased over the study period with the majority of articles arising from large generalised cancer databases in North America. There has been an increase in UTUC-specific registries in the previous five years that have offered the most granular, complete analysis and these will continue to report in the coming years. The majority of published data assessed epidemiological factors and compared outcomes of treatment modalities with a small proportion of articles focusing on prognostic nomograms and quality of life. Larger cancer registries that contribute the majority of the published analysis are likely subject to significant selection bias when comparing cohorts for treatment analysis and the need for prospective UTUC specific registries is apparent. Future directions include the potential for registry-based randomised controlled trials (RCTs) and clinical quality registries (CQR) that have the ability to change practice and improve care.
UNASSIGNED: The utilisation of registry-based methodology for analysis in UTUC has increased substantially over the last 20 years. In addition to the utilisation of large cancer registries, the creation of UTUC specific registries is likely to contribute the most granular, translatable data in diagnosis and management.
摘要：
■上尿路上皮癌（UTUC）缺乏高质量的证据来评估当前的表现模式，诊断,由于疾病的稀有性和患者的异质性，治疗和结果。注册管理机构可以克服许多挑战，使UTUC临床试验具有挑战性，并为许多影响UTUC管理的临床问题提供答案。在这篇叙述性综述中，我们旨在总结对UTUC文献做出贡献的注册表设计，讨论它们的优势和局限性，以及UTUC注册管理机构的未来方向。
■两名独立的审阅者从2002年7月至2022年7月对OVIDMEDLINE数据库进行了搜索。包含的文章必须在同行评审的期刊上发表，并使用基于注册表的方法来报告UTUC。搜索受到MeSH和关键字的限制，并且仅限于英语。
■从基于注册表的方法中确定并纳入了关于UTUC的报告。在研究期间，使用基于注册表的数据的文章大幅增加，其中大多数文章来自北美的大型通用癌症数据库。在过去的五年中，UTUC特定的登记册有所增加，这些登记册提供了最细粒度的，完整的分析，这些将在未来几年继续报告。大多数已发表的数据评估了流行病学因素，并比较了治疗方式的结果，一小部分文章侧重于预后列线图和生活质量。在比较用于治疗分析的队列时，贡献大部分已发表分析的较大癌症登记处可能会受到显著的选择偏差，并且对前瞻性UTUC特异性登记处的需求是显而易见的。未来的方向包括基于注册的随机对照试验（RCT）和临床质量注册（CQR）的潜力，这些试验有能力改变实践并改善护理。
■在过去20年中，基于注册表的分析方法在UTUC中的使用已大大增加。除了利用大型癌症登记处，UTUC特定注册管理机构的创建可能会贡献最细粒度，诊断和管理中的可翻译数据。
■两名独立的审阅者从2002年7月至2022年7月对OVIDMEDLINE数据库进行了搜索。包含的文章必须在同行评审的期刊上发表，并使用基于注册表的方法来报告UTUC。搜索受到MeSH和关键字的限制，并且仅限于英语。
■从基于注册表的方法中确定并纳入了关于UTUC的报告。在研究期间，使用基于注册表的数据的文章大幅增加，其中大多数文章来自北美的大型通用癌症数据库。在过去的五年中，UTUC特定的登记册有所增加，这些登记册提供了最细粒度的，完整的分析，这些将在未来几年继续报告。大多数已发表的数据评估了流行病学因素，并比较了治疗方式的结果，一小部分文章侧重于预后列线图和生活质量。在比较用于治疗分析的队列时，贡献大部分已发表分析的较大癌症登记处可能会受到显著的选择偏差，并且对前瞻性UTUC特异性登记处的需求是显而易见的。未来的方向包括基于注册的随机对照试验（RCT）和临床质量注册（CQR）的潜力，这些试验有能力改变实践并改善护理。
■在过去20年中，基于注册表的分析方法在UTUC中的使用已大大增加。除了利用大型癌症登记处，UTUC特定注册管理机构的创建可能会贡献最细粒度，诊断和管理中的可翻译数据。
