The United States Renal Data System (USRDS) began in 1989 through US Congressional authorization under National Institutes of Health competitive contracting. Its history includes five contract periods, two of 5 years, two of 7.5 years, and the fifth, awarded in February 2014, of 5 years. Over these 25 years, USRDS reporting transitioned from basic incidence and prevalence of end-stage renal disease (ESRD), modalities, and overall survival, as well as focused special studies on dialysis, in the first two contract periods to a comprehensive assessment of aspects of care that affect morbidity and mortality in the second two periods. Beginning in 1999, the Minneapolis Medical Research Foundation investigative team transformed the USRDS into a total care reporting system including disease severity, hospitalizations, pediatric populations, prescription drug use, and chronic kidney disease and the transition to ESRD. Areas of focus included issues related to death rates in the first 4 months of treatment, sudden cardiac death, ischemic and valvular heart disease, congestive heart failure, atrial fibrillation, and infectious complications (particularly related to dialysis catheters) in hemodialysis and peritoneal dialysis patients; the burden of congestive heart failure and infectious complications in pediatric dialysis and transplant populations; and morbidity and access to care. The team documented a plateau and decline in incidence rates, a 28% decline in death rates since 2001, and changes under the 2011 Prospective Payment System with expanded bundled payments for each dialysis treatment. The team reported on Bayesian methods to calculate mortality ratios, which reduce the challenges of traditional methods, and introduced objectives under the Health People 2010 and 2020 national health care goals for kidney disease.
Bibliographical noteFunding Information:
The USRDS Coordinating Center developed the graphic full-color layout in 2000 under the third contract, awarded to the University of Minnesota and Minneapolis Medical Research Foundation investigators. The concept was modeled after the Dartmouth Atlas of Health Care, , demonstrating clear patterns across the country. 8 the Centers for Disease Control and Prevention Atlas of Mortality, 9 and the National Cancer Institute’s Atlas of Cancer Mortality. 10 The atlas of ESRD was developed in a spread format much like a poster presentation with targeted areas such as incidence by specific diseases or types of hospitalization. The design employed a thematic metaphor from the art and literary world to evoke the human elements of disease, hope, and philosophical aspects of the human spirit. The first atlas developed the technique of mapping data on a national level to demonstrate the wide geographic variation in care and outcomes. 11 The most recent incidence rate map is shown in Figure 7
We thank Chronic Disease Research Group colleagues Delaney Berrini, BS, for figure preparation, and Nan Booth, MSW, MPH, ELS, for manuscript editing. This work was supported by Contract No. HHSN267200715002C (National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, Maryland) and the Minneapolis Medical Research Foundation. The data reported here have been supplied by the United States Renal Data System. This article is published as part of a supplement, supported by a grant from the 59th Annual Meeting of the JSDT.
- United States Renal Data System
- end-stage renal disease
- public health