The process of collecting and analyzing transplant data is complex. Familiarity with how these data are collected is crucial to a thorough understanding of the information. This article focuses on available OPTN-SRTR data and the continuing evolution of data collection mechanisms; how that data collection system is improving the data quality and reducing the data collection burden; how additional ascertainment of outcomes both completes and validates existing data; and caveats that remain for researchers. This year's article focuses further on research considerations related to cohort choice, timing of data submission, and potential biases in follow-up data. Ongoing improvements in data collection timeliness and scope are covered. The impact of extra ascertainment of outcomes, particularly for post-transplant kidney graft failure from Medicare data, are also examined. A section on graft failure reporting among different sources traces the steps by which the SRTR reconciles different data sources in its analyses. It is important that those reading and conducting transplant research understand the origin, structure, and scope of the available data. All of these issues should be carefully considered when choosing cohorts and data sources for analysis.
By examining the sources, quality and organization of transplant data available, as well as making observations about data reporting patterns and accuracy, we hope to improve understanding of existing results, help researchers with study design and stimulate new exploratory initiatives. The primary data source, collected by the OPTN, has benefited from extensive recent technological advances. Transplant professionals now report patient and donor data more easily, quickly, and accurately, improving data timeliness and precision. Secondary sources may be incorporated, improving the accuracy and expanding the scope of analyses. For example, auxiliary mortality data allows more accurate survival analysis and conclusions regarding the completeness of center-reported post-transplant follow-up. Furthermore, such sources enable examination of outcomes not reported by centers, such as mortality after waiting list removal, providing more appropriate comparisons of waiting list and post-transplant mortality. Complex collection and reporting processes require specific analytical methods and may lead to potential pitfalls. Patterns in the timing of reporting adverse events differ from those for 'positive' events, yielding the need for care in choosing cohorts and censor dates to avoid bias. These choices are further complicated by the use of multiple sources of data, with different time lags and reporting patterns.