About USRDS
Contact USRDS
Email: usrds@niddk.nih.gov
Along with producing the Annual Data Report (ADR) on end-stage renal disease (ESRD) & chronic kidney disease (CKD) in the United States, the USRDS fulfills data requests, provides standard analysis files (SAFs) to researchers, produces the Researcher’s Guide to help researchers use USRDS data, and presents the results of its research at national conferences and in peer-reviewed journals.
Mission
Five central goals define the mission of the USRDS:
• Characterizing the ESRD population.
• Describing the incidence and prevalence of CKD and ESRD and trends in mortality and disease rates.
• Investigating relationships among patient demographics, treatment modalities, and morbidity.
• Reporting the costs of ESRD treatments and total burden of the ESRD program in the United States.
• Identifying new areas for special studies and supporting investigator-initiated research.
Administrative Oversight
As the Contracting Officer Representative (COR), Kevin Abbott, M.D., M.P.H., provides direct oversight of the Coordinating Center (CC). Members of the Centers for Medicare & Medicaid Services (CMS), the ESRD networks, and the nephrology community provide crucial input and feedback through committee participation.
The Steering Committee functions as the governing body of the USRDS, and is responsible for the operations of the CC. It works under the direction of the CORs, and includes individuals from CMS, the National Institutes of Health (NIH), and the CC. Its responsibilities include data management and validation, assurance of data availability for researchers and government officials, oversight of Annual Data Report production, and study design and project tracking.
The USRDS Contract Management Board plays a major role in advising the CORs on appropriate and necessary special studies and analyses. This committee is also responsible for reviewing Annual Data Reports.
Coordinating Center Leadership
Kirsten L. Johansen, M.D., Director
James B. Wetmore, M.D., M.S., Deputy Director
David T. Gilbertson, Ph.D., Project Manager
Frequently Asked Questions (FAQs)
The United States Renal Data System (USRDS), funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), 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 Chronic Disease Research Group, a division of Hennepin Healthcare Research Institute located in Minneapolis, Minnesota.
No. Data presented in the USRDS Annual Data Reports are part of the public domain. However, please use the following citation and disclaimer as applicable:
United States Renal Data System. 2023 USRDS annual data report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2023.
Publications based on USRDS data 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.
The Annual Data Report (ADR) is divided into three parts -- two volumes and Reference Tables. Specific chapters address trends in ESRD patient populations, quality of ESRD care, kidney transplantation outcomes, costs of ESRD care, Healthy People 2030 objectives, chronic kidney disease (CKD), and pediatric ESRD. Visit the main ADR page or Reference Tables. You may also review previous ADRs.
All ESRD patients, regardless of insurance coverage and age, are included in the USRDS database.
The Core, Transplant and Hospital SAFs contain information on all ESRD patients. Only patients with Medicare fee-for-service coverage are included in the claim files.
USRDS data are available to individuals upon approval of a research proposal. Information on submitting a data request, including an outline for research proposals can be found here. Information on data available for request can be found in the Researcher's Guide.
There is no cost for the standard analysis files.
The Data Extraction System for Kidney Related Information & Basic Epidemiology (DESKRIBE) system on the web site enables you to create your own tables using state or county-level data.
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 person-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 by events such as death, dis-enrollment, or the end of the time period, divided by 365.
“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 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.
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.
If you have any questions regarding the data presented in the USRDS Annual Data Reports or about using the website, please send an email to usrds@niddk.nih.gov.
Planned publications based on USRDS Standard Analysis Files (SAFs) must be submitted for privacy assurance review to the USRDS Coordinating Center prior to journal submission. Please use the USRDS Manuscript Approval Request Checklist (PDF, 166.37 KB) for reference and send your paper to usrds@niddk.nih.gov using the subject line: “USRDS manuscript.”
Contact USRDS
Email: usrds@niddk.nih.gov