After nearly 15 years of a gradual drop in the mortality rate among patients on dialysis, there has been a leveling off, or lack of improvement, in reducing the death rate further. The organization that tracks both of those data points is the same – the U.S. Renal Data System.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has funded the scientific registry since its inception some 30 years ago.
The NIDDK, wrote USRDS researchers Friedrich K. Port, MD, MS, and Philip Held, PhD, in an anniversary paper in the American Journal of Kidney Diseases, “had the vision to bring timely research to what were clearly serious clinical and public policy problems. Concomitant developments in computer systems and broader acceptance of statistical analyses of observational data were favorable to the emergence of the USRDS at that time.”
The NIDDK put research dollars into the USRDS because of concern about high mortality rates among patients on dialysis – just 15 years after Congress had agreed to fund dialysis therapy for most patients with ESKD. Dallas nephrologists Tom Parker, MD, and Alan Hull, MD, spearheaded the Morbidity and Mortality Conference in 1989 to compare mortality statistics around the world. The conclusion was that only the U.S. had high death rates among its patients.
The USRDS used coordinating centers to gather detailed profiles of all patients with ESKD, although the kidney community was skeptical about using the Medicare database as a reliable source of information. The first USRDS Annual Data Report was published in 1989 and “presented a clear indication that the USRDS was going to provide a profound, thorough and timely picture of ESKD in the United States,” Port and Held wrote.
While the report’s structure has remained general the same for the last 3 decades, the USRDS Coordinating Centers developed several “special studies,” allowing collection of targeted supplemental data. One of those special studies identified the predominance of catheters and synthetic grafts and detailed how outcomes for patients with fistulas were better in terms of costs, morbidity and mortality. This data review was used as a baseline for the start of the national Fistula First Initiative.
“Launched when there was a profound scarcity of ESKD research, the USRDS for 30 years has brought a strong scientific basis for epidemiologic and economic research, including application of advanced statistical methodologies related to kidney disease,” Port and Held wrote. “ ... The USRDS has contributed in many important ways to advancing knowledge and improving patient care and will continue to be an indispensable data resource for clinicians, investigators and policy makers.” – by Mark E. Neumann
Disclosures: Port reports he is a consultant to Arbor Research Collaborative for Health, which is part of a team led by the University of Michigan Kidney Epidemiology and Cost Center that is currently contracted to serve as the USRDS Coordinating Center. Held reports no relevant financial disclosures.