... additional cost of the Annual Data Report, which is distributed as a Supplement to the American Journal of Kidney Diseases, is borne by a grant from Gambro.
1934
Abstracts
The USRDS: structure and function Philip J. Held University of Michigan, Ann Arbor, Michigan, USA
Introduction The United States Renal Data System (USRDS) started operations in May of 1988. Now in its eighth year of operation, the USRDS has become the principal repository of observational data and a prime source of research and analysis of end-stage renal disease in the US.
Goals The overall goals of the USRDS are to maintain and analyse information related to incidence, prevalence, treatment, cost, and outcomes of patients in the US with end-stage renal disease (ESRD). Other important goals are to conduct cost and cost effectiveness analyses and to provide convenient access to research data files for qualified investigators outside the USRDS.
Governance The funding and overall direction of the USRDS is provided by the Division of Diabetes, Kidney and Urology Diseases of the National Institutes of Health (NIH) which is an arm of the Public Health Service of the United States Federal Government. Another US Federal Agency (the Health Care Financing Administration, the Medicare institution which pays for the health care provided to the elderly and the physically disabled) is an active participant with the NIH in providing direction to the USRDS. Most all patients with ESRD are insured by Medicare regardless of age.
Structure The USRDS has several committees to provide advice to the NIH. There are two Scientific Advisory Committees, one biomedical and one economic. Typically these committees meet twice a year. There is an Executive Committee, directed by the NIH Project Officer (Lawrence Agodoa) and includes representatives from the CC, the Director of the Biomedical Scientific Advisory Committee and representatives of Medicare Agency and the CC. A Special Study Correspondence and offprint requests to: Dr P. J. Held, University of Michigan, Kidney Epidemiology and Cost Center. 315 W. Huron Street, Suite 240, Ann Arbor, MI 48103, USA.
Working Group functions to coordinate the data collection for special studies and includes representatives of NIH, the Medicare funding agency, the ESRD Networks, and the CC. The Executive Committee and the Special Study Working Group each meet monthly by telephone typically for 1 hour. The USRDS has a Coordinating Center (CC) at the Kidney Epidemiology and Cost Center at the University of Michigan. The CC has a Director, Philip J. Held, Ph.D. and a co-Director Friedrich K. Port, MD, MS, and operates with a staff of approximately 12 full time equivalent personnel. Financial support The operating budget, including indirect costs, for the 5 years from 1993 through 1998 is 8.98 million US dollars. The majority of this support is from the NIH, with the Medicare Agency providing minority support. The additional cost of the Annual Data Report, which is distributed as a Supplement to the American Journal of Kidney Diseases, is borne by a grant from Gambro Health Care.
Staffing The Coordinating Center staff includes a broad multidisciplinary team of nephrologists, economists, epidemiologists, biostatisticians, computer support staff, and administrative personnel. Sources of data Data derived from several sources: • Clinical information supplied to the Medicare agency include baseline demographic and medical history information for new ESRD patients. Other clinical data include a death notification form, and transplant information along with individual transplant recipient follow-up information. • Other demographic information is obtained at the time of enrollment in the Social Security System (A Federal Retirement and Disability Program to which employers and employees make contributions). Date of death is also collected by this agency. • Medicare's annual Facility Survey of all dialysis units provides a one day census count of patients by dialysis unit and modality, as well as number of deaths and other statistics. • Medicare claims for treatment of individual ESRD
1935
Abstracts
patients provides information in a fee-for-service format. In sheer volume, this is the largest source of information. • Special Study information, of which there have been approximately 8 such studies, which typically include detailed clinical and outcome information for national random samples of 6000 ESRD patients. Assurance of data quality Internal consistency checks across sources of information as well as external validity checks by Special Studies with two sources of the same information.
Statistical tools such as the Standardized Mortality Ratio (SMR) and the Standardized Hospitalization Ratio (SHR). A confidential annual report to all dialysis units providing individual unit SMR and SHR estimates as well as other patient profiles. Research data files for qualified investigators containing practically all information in the USRDS database. Patient and dialysis unit identification are masked. Provision of answers to data requests from the public. A site on the World-Wide-Web. Lessons or what we would change if we could
Computer hardware and software
• One patient identification code with no possibility for changes. A Windows NT operating system on a series of • A data system which permits true updating of records rather than replacement. As part of such a Personal Computers is the basis of the computer system it would be especially desirable to reduce the system. With the full Medicare claims data loaded, we lag time in reporting information. (Such a system are now operating with an excess of 60 gigs of storage. is currently being installed by Medicare). All statistical analyses are performed with the SAS software. Microsoft Word, Excel, and PowerPoint are • Direct electronic entry of information with autoalso used for word processing, spreadsheet analysis, matic quality control checks. and graphics. • Standardization of medical and administrative reporting. Products Discussion and comments • An Annual Data Report of approximately 200 pages of text, 140 graphics and 400 Reference Tables. This report is mailed to approximately 4000 recipients worldwide including approximately 2500 dialysis units in the US. The text portion of the Annual Data Report is reproduced as a supplement to The American Journal of Kidney Diseases. • Published papers in peer reviewed journals.
Power of sampling versus a census. No more data than you need. The power of Special Studies Flexibility in data requirements Community support and the need for feedback. Clinical and timely relevance Priority of data sources
Morbidity and mortality in the US ESRD population Friedrich K. Port University of Michigan, Ann Arbor, Michigan, USA
Introduction
lyses that adjust for patient characteristics, including co-morbid conditions.
The US Renal Data System has longitudinal data on over 93% of patients treated for ESRD. It uses Special Trends in transplant patient and graft survival Studies on random samples of patients to describe the treatment of ESRD patients and permit outcome ana- Short term and long term graft survival have significantly improved in recent years. Graft outcomes can be Correspondence and offprint requests to: Dr F. K. Port, The University further improved by shortening cold ischaemia time, of Michigan, Kidney Epidemiology and Cost Center, 315 W. Huron Street, Suite 240, Ann Arbor, MI 48103, USA. avoiding delayed graft function, etc.
