The utility of clinical registries for guiding clinical practice in upper tract urothelial cancer: a narrative review

Background and Objective: 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.Methods: 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.Key Content and Findings: 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.Conclusions: 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.