Data Resources for Studying End Stage Renal Disease (ESRD)

Individuals with End-Stage Renal Disease (ESRD) may be eligible to receive Medicare benefits prior to age 65.  While the ESRD population usually represents around one percent of the total Medicare population, the ESRD population accounts for approximately seven percent of total Medicare spending. 1

United States Renal Data System (USRDS)

The most comprehensive source for data on ESRD patients is through the United States Renal Data System or USRDS. The USRDS website offers a wide range of downloadable reports, slides, and excel files on the Chronic Kidney Disease (CKD) and ESRD populations. Researchers can use the USRDS' online query system to request patient-specific data from USRDS. The USRDS database is comprised of various data from CMS, the Organ Procurement and Transplantation Network (OPTN), Centers for Disease Control (CDC), Census, and ESRD Networks. The Researcher’s Guide on the USRDS website provides a detailed description of the database and its sources. Researchers who are interested in this data should contact USRDS directly for more information.

PMMIS/REBUS/REMIS from CMS

One of the primary sources for the USRDS dataset described above is the Renal Management Information System (REMIS) at CMS. This database was first known as the Program Management and Medical Information System (PMMIS) and then as the Renal Beneficiary and Utilization System (REBUS). The database is patient-specific, may be released with individual identifiers, and is updated annually. ResDAC recommends that researchers first contact USRDS about obtaining USRDS data. If researchers are still interested in requesting REMIS data directly from CMS, please contact ResDAC for information on data documentation, pricing and the request process. The REMIS data is only released as Research Identifiable data and, therefore, must meet the criteria for release for research purposes.

CMS Medicare Claims Data

The Medicare claims data will contain claims for ESRD patients if they are eligible for Medicare. The USRDS and REMIS include ESRD-specific data elements that are not, however, part of the Medicare claims data. 

CMS ESRD Payment Files

Researchers studying CMS payment at a facility level for ESRD services may be interested in the downloadable files that are included as part of the End-Stage Renal Disease (ESRD) Payment Regulations and Notices. These files are updated as part of the Proposed and Final Rules for the ESRD Prospective Payment System (PPS). The downloads include the ESRD Provider Level Impact File that provides facility level payment information as well as wage index information.

1.Annual Data Report 2020. United States Renal Data System, Web. 10 Feb 2020