Data on Health and Well-being of American Indians, Alaska Natives, and Other Native Americans, Data Catalog

United States Renal Data System (USRDS)

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Sponsor: U.S. Department of Health and Human Services (DHHS)National Institutes of Health (NIH)/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Description: The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) and chronic kidney disease (CKD) in the United States. The USRDS is funded directly by NIDDK in collaboration with the Centers for Medicare & Medicaid Services (CMS). The United Network for Organ Sharing (UNOS) is also providing transplant and wait-list data, under the inter-agency agreement, to this data collection effort in order to improve the accuracy of ESRD patient information.
Relevant Policy Issues: Measurement of Health Status and Disease-specific Measurements.
Data Type(s): Registry
Unit of Analysis: Individual
Identification of AI/AN/NA: Native American (includes American Indians and Alaska Natives.) The combined category Asian/Pacific Islander is used in USRDS reports.
AI/AN/NA Population in Data Set: The population size by race is available in Reference Section M of the 2005 USRDS Annual Data Report (ADR). ESRD incidence and prevalence rates by year for Native Americans (NA) are available in Reference Sections A and B. For example, the incident count and adjusted incident rate per million population for NA in 2003 was 1,097 and 503.9 respectively.
Geographic Scope: The geographic scope of the study is national. Further geographic analysis is possible by state, county, zipcode, and HSA (CDC Health Service Area).
Date or Frequency: Data have been compiled annually since 1988, with the 2004 data being the most recently available for analysis.
Data Collection Methodology: Data for the USRDS Database are compiled from existing data sources including the Centers for Medicare and Medicaid Services (CMS) Renal Management Information System (REMIS), CMS claims data, Facility survey data, CDC survey data, Standard Information Management System (SIMS), Medicare Evidence Form (CMS-2728), ESRD Death Notification Form (CMS-2746), and UNOS transplant and wait-list data. The CMS data files are supplemented by CMS with enrollment, payer history, and other administrative data to provide utilization and demographic information on ESRD patients.
Participation: Mandatory
Response Rate: Response or coverage rates are 100 percent since May of 1995 because the amended ESRD entitlement policy requires a Medicare Evidence form to be submitted for all ESRD patients regardless of their insurance and eligibility status. However, the payment data for non-Medicare ESRD patients maybe absent during the 30-month coordination period.
Strengths: Data set contains information on all Native American patients with ESRD. There are multiple years of data available starting from 1978.
Limitations: Payment data of non-Medicare or MSP patients during the first 30-month coordination period is not available.
Access Requirements and Use Restrictions: The data are available to the public through a data use agreement (DUA). The cost associated with use of the data set is $600 for the core data file and $100-$400 for each supplemental file. Researchers completing a data use agreement can access the limited data set directly. To submit a DUA request, contact the Coordinating Center at (888) 99USRDS. Statistical reports providing frequencies and basic tabulations are available through the Renal Data Extraction and Referencing System (RenDER) on the USRDS website: www.usrds.org.
Contact Information: Annual Data Reports can be accessed through: http://www.usrds.org/adr.htm.

Data requests and publications:
USRDS Coordinating Center
914 South 8th Street
Suite D-206
Minneapolis, MN 55404
(612) 347-7776
(888) 99USRDS
Fax: (612) 347-5878
usrds@usrds.org

Data file contact: Shu Chen, MS, schen@usrds.org.


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