Q: What is the USRDS?
A: The United States Renal Data System (USRDS), funded by the National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, is the national data registry that collects, analyzes, and distributes information on the end-stage renal disease (ESRD) population in the U.S., including treatments and outcomes. The USRDS Coordinating Center is operated by the University of Michigan Kidney Epidemiology and Cost Center (UM-KECC) in partnership with Arbor Research Collaborative for Health, both located in Ann Arbor, Michigan, USA.
Q: Do I need permission to use data from the Annual Data Reports in publications?
A: No. Data presented in the USRDS Annual Data Reports are in the public domain. However, please use the following citation and disclaimer as applicable:
Saran R, Li Y, Robinson B, et al. US Renal Data System 2014 annual data report: epidemiology of kidney disease in the United States. Am J Kidney Dis. 2015;66(1)(suppl 1):S1-S306.
Publications based on USRDS data reported in the Annual Data Report or on the USRDS web site or supplied upon request must include the above citation and the following notice: The data reported here have been supplied by the United States Renal Data System (USRDS). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government.
Q: How do I find data on your web site?
A: The Annual Data Report is divided into two parts. Specific chapters address trends in ESRD patient populations, quality of ESRD care, kidney transplantation outcomes, costs of ESRD care, Healthy People 2020 objectives, chronic kidney disease, pediatric ESRD, and cardiovascular disease. Choose Annual Data Report or Reference Tables from the home page. You may view past years’ publications at http://www.usrds.org/archive.aspx.
Q: How can I request the USRDS Standard Analysis Files (SAFs)?
A: The USRDS database is available to individuals with approved research proposals. An outline for research proposals and information on the available SAFs are detailed here.
Q: Are only Medicare ESRD patients included in the USRDS registry?
A: All ESRD patients, regardless of insurance coverage and age, are included in the USRDS database. Only claims analyses, such as hospitalizations, costs, and clinical services, are restricted to Medicare patients.
Q: How do I access the data used for plotting the charts and graphs in the Annual Data Report?
A: When you download individual sections of the Annual Data Report, both a PDF and an MS Excel file are placed in a folder on your local hard disk. First, select the appropriate operating system choice (Windows or Mac) under the chapter you want, and choose “save” in the “File Download” dialog box. Then, decide where you want to save the file in your hard disk and click the “save” button. The default folder should be your desktop. Double click the saved file (it is a zipped file) and it will self-extract and create a folder called “USRDS”. You will find a PDF file and an Excel file in the folder.
Q: I’m having a problem downloading slides/files from your web site.
A: See the above download instructions. For technical help regarding downloading files, please contact the web site administrator at firstname.lastname@example.org.
Q: How can I find out about ESRD patients in my region?
A: The Renal Data Extraction and Reference (RenDER) system on the web site enables you to create your own tables using state or county level data. Complete the short registration with your contact information and select a password to use this online tool. A tutorial to help you get started is at http://www.usrds.org/render/viewtut/1.html.
Q: What does “per patient-year at risk” mean?
A: ESRD hospitalization, transplantation, Medicare costs, and mortality rates are typically represented as “per person-time” to provide more accurate comparisons among groups when follow-up time (i.e., patient exposure time) is not the same in all groups. This can be expressed as per 100, 1000, 100,000, 1 million patient-years or patient-years at risk.
“Patient-year at risk” means that the denominator of the rate calculation is ascertained by adding exposure times of all patients, where each patient’s exposure time is defined as days spent in a pre-determined time period (i.e., a year), censored only by events such as death or disenrollment, or the end of the time period. Divide the total number of days by 365 to get the actual year value.
“Patient-year” means that the denominator of the rate calculation is ascertained by counting all patients who are in the pre-determined time period for at least one day.
The expressions “per 100,000 patient-years at risk” and “per million patient-years” are just different ways of normalizing the rates to better present them. Thus, a hospitalization rate of 0.0000015 per patient-year, can also be expressed as 1.5 per million patient-years.
Q: Where can I obtain medical advice regarding kidney disease and ESRD?
A: The USRDS Coordinating Center does not provide medical assessments or diagnoses or discuss symptoms. We urge people with questions about their health to contact a health care professional for an individual assessment.