The Value of Clinical Colorectal Cancer Registries in Colorectal Cancer Research: A Systematic Review

Area of Science:

• Oncology
• Clinical Research
• Health Informatics

Background:

• Clinical colorectal cancer registries (CCCRs) are resource-intensive tools for cancer research.
• The value of CCCRs is often assessed by quality control and audit, but research output is a key metric.
• No comprehensive review has formally assessed the research value of CCCRs.

Purpose of the Study:

• To evaluate the research output and impact of existing multi-institutional CCCRs.
• To characterize the nature and scope of research published by CCCRs.
• To determine if CCCR research output justifies the resources required for their maintenance.

Main Methods:

• Searched MEDLINE and Google Scholar (1990-2016) for multi-institutional CCCRs with published outcomes.
• Excluded purely population-based registries.
• Assessed research impact using publication counts, citation index, impact factor, and Altmetric scores.

Main Results:

• Identified 18 CCCRs with varying sample sizes (104 to 1,400,000 cases).
• Anastomotic leak following colorectal surgery was the most frequent outcome studied.
• The National Cancer Database had the highest number of publications (66), while other registries led in citation metrics.

Conclusions:

• CCCRs generate a substantial volume of colorectal cancer outcomes research.
• However, the research impact is disproportionately low compared to the resources invested.
• Enhancing CCCR value requires focusing on data linkage and automated collection for international comparisons.