Table 1.

Summary of select data sources in the nephrology setting

Data SourceDescriptionLimitations
Centers for Medicare and Medicaid Services (CMS)Claims data collected under amendment to Public Law 92–603; additional data collection limited (e.g., Form CMS-2728)Limited clinical data (actual treatments) and delay in availability (currently 2 years behind)
US Renal Data System (2) ( by the National Institute of Diabetes and Digestive and Kidney Diseases; laims, epidemiologic, and clinical-based, stand-alone database (diagnoses, demography, biochemical data, claims, treatment and payor histories, hospitalization events, physician/supplier services, and providers)Delay in availability (currently 2 years behind)
University of Michigan Kidney Epidemiology and Cost Center (3)This group produces Dialysis Facility Reports under contract with CMS and provides them to individual facilities; each facility is provided information on their patients, treatment patterns, transplantation patterns, hospitalization, and mortality rates compared with local and national averagesPredominantly based on claims data, limited clinical data (actual treatments), and delay in availability (currently ∼1 year behind)
Individual insurersClaims data collected based on insurance claimsLimited clinical data (actual treatments) and limited availability as patients transfer between insurers
United Network for Organ Sharing Registry (5) ( of patients awaiting solid organ transplants, with limited data available after transplantationLimited clinical data (i.e., actual treatments, cormidities, and outcomes)
Quotidien Dialysis Registry (6) ( originally designed to collect data about outcomes on intensive hemodialysis prescriptions (>5 times/wk); now, it also includes data on other alternative hemodialysis regimensLimited to select forms of dialysis
Dialysis information systems from large dialysis organizationsDatabases created using facility-based clinical systems that collect detailed data about what orders and treatments are given within a dialysis facility, including detailed laboratory test data and prescriptionsLimited details on comorbidities, limited information about what happens outside the clinic (e.g., hospitals), limited information about nuances of care, and living datasets subject to availability at the time of data pull