Along with producing the Annual Data Report on ESRD & Chronic Kidney Disease (CKD) in the United States, the USRDS also fulfills data requests, provides standard analysis files and specialized datasets to researchers, produces the Researcher’s Guide, and presents the results of its research at national conferences and in peer-reviewed journals.
Six central goals define the mission of the USRDS: to characterize the ESRD population; to describe the prevalence and incidence of ESRD along with trends in mortality and disease rates; to investigate relationships among patient demographics, treatment modalities, and morbidity; to report the costs of ESRD treatments and total burden of ESRD program in the United States; to identify new areas for special renal studies and support investigator-initiated research; and to provide data sets and samples of national data to support research by the Special Studies Centers.
Administrative oversight of the USRDS is as follows:
Lawrence Agodoa, MD and Paul Eggers, PhD provide direct oversight of the Coordinating Center and Special Studies Centers, and members of CMS, the ESRD networks, and the renal community provide crucial input and feedback through their committee participation.
The Steering Committee functions as the governing body of the USRDS, and is responsible for the operations of the CC and SSCs. It works under the direction of the Project Officers, and includes representatives from CMS, the NIH, the CC, and each of the SSCs. Its responsibilities include coordination among the centers, study design, project tracking, data management and validation, assurance of data availability for researchers and government officials, and oversight of Annual Data Report production.
The USRDS External Expert Committee plays a major role in advising the Project Officers on appropriate and necessary special studies, data studies, and analyses. This committee is also responsible for reviewing manuscripts and Annual Data Reports.
The Data Management External Expert Committee (DMAC) includes members from CMS, Network Forum representatives, database technical staff, and others appointed by the Project Officers. DMAC addresses the accuracy and completeness of the data provided to the USRDS, and works to ensure timely fulfillment of data requests.
The Annual Data Report Committee (ADRC) reviews the data sections of previous ADRs, proposals for future editions, and ideas for expanded data availability on the USRDS website.
The Information Systems Committee (ISC) reviews planned hardware requirements, systems configuration, documentation, and performance, and evaluates new technologies that may enhance the structure, function, and management of the database.
The Special Studies Review and Implementation Committee (SSRIC) serves as the operations committee for SSC proposals and support of CC projects. It is a collaboration of CMS, the ESRD networks, and the providers.
The Data Request Review Committee (DRRC) reviews data requests requiring more than two hours of staff time to fulfill, and makes recommendations to the Project Officers based on the types of data sets requested and the ways in which the CC can improve the availability of data.
The Renal Community Council (RCC), with 30 professional, scientific, and advocacy groups interested in ESRD, serves as a significant liaison between the USRDS and the ESRD community.