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PART V
Data And Research

The final portion of the report addresses data system and research needs of the ESRD program. Chapter 13 deals with the evolution of ESRD data systems in the Health Care Financing Administration, as well as the more recent development of the U.S. Renal Data System and the scientific registry of the United Network for Organ Sharing.

Chapter 14 addresses ESRD-related research needs, emphasizing the importance of a comprehensive approach that spans laboratory and clinical research, epidemiology, and health services research. Clinical studies of the adequacy of dialysis also receive attention.



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Kidney Failure and the Federal Government PART V Data And Research The final portion of the report addresses data system and research needs of the ESRD program. Chapter 13 deals with the evolution of ESRD data systems in the Health Care Financing Administration, as well as the more recent development of the U.S. Renal Data System and the scientific registry of the United Network for Organ Sharing. Chapter 14 addresses ESRD-related research needs, emphasizing the importance of a comprehensive approach that spans laboratory and clinical research, epidemiology, and health services research. Clinical studies of the adequacy of dialysis also receive attention.

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Kidney Failure and the Federal Government This page in the original is blank.

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Kidney Failure and the Federal Government 13 Data Systems The OBRA 1987 charge asked that the IOM assess the adequacy of existing data systems to monitor epidemiology, access, quality, and reimbursement effects on quality on a continuing basis. In this chapter, three major sources of information about ESRD patients and the ESRD program are described: the HCFA data systems, the U.S. Renal Data System (USRDS), and the United Network for Organ Sharing (UNOS). The adequacy of these data systems is addressed, as are some of their specific deficiencies, and the committee makes recommendations for their improvement. The committee1 also evaluates how these data systems fulfill the respective legislative requirements: OBRA 1986 and the National Organ Transplant Act of 1986. HEALTH CARE FINANCING ADMINISTRATION From 1973 until mid-1977, the ESRD program was administered jointly by the SSA Bureau of Health Insurance (BHI) and the PHS Bureau of Quality Assurance (BQA). BHI was responsible for monitoring Medicare entitlement, utilization, and reimbursement; BQA was responsible for developing quality assurance standards and the medical information system for dialysis and transplant patients. Divided management resulted in continuing data-system chaos. As a consequence, data about the ESRD patient population and the ESRD program are incomplete for the 1970s. After HCFA was established in 1977, the monitoring of Medicare program management and ESRD patient information was consolidated in HCFA's Bureau of Data Management and Strategy (BDMS). Following enactment of Public Law 95–292 of 1978, the ESRD Program Management and Medical Information System (PMMIS) was developed to provide medical and program information for ESRD program analysis, policy development, and

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Kidney Failure and the Federal Government epidemiologic research. A precursor of the current ESRD, PMMIS was implemented by HCFA between 1978 and 1980. Data forms were collected through the Medicare intermediaries and Medicare central office. No measures were used to enforce compliance, and the completion rate was as low as 50 percent for some information. In 1981, adjustments were made in the data collection process: Reporting of the onset of ESRD was tied to the entitlement; a new Medical Evidence Form was introduced, consolidating the previous form and the request for entitlement form, and reducing the content of information collected. Since that time, there has been continuous improvement in the quality and completeness of these HCFA data. HCFA data bases containing ESRD financial data include provider cost reports as well as beneficiary medical utilization records with Medicare Parts A and B billing information. No charge or payment information is included in PMMIS. The relevant data forms and data files for financial information are shown in Table 13-1. Cost reports are now submitted electronically, an improvement that will facilitate program analysis and research. Previously, facilities had submitted paper copies of these reports and ensuing data entry and analysis were lacking. PMMIS assembles information on Medicare ESRD patients and Medicare-approved ESRD hospital-based and independent dialysis facilities. Major PMMIS statistical files and the relevant data forms are indicated in Table 13-1. These include the Medical Evidence File, the Patient Identification File, the Transplant File, the Transplant Follow-up File, the Quarterly Dialysis File, the Hospital Inpatient Stay Record File, and the Facility Survey. A new transplant form, developed jointly by the American Society of Transplant Surgeons and HCFA, was introduced in 1983, providing more clinical data about transplants. Compliance in reporting increased substantially: More than 91 percent of the transplant information forms were received for kidney transplants performed during 1985–86. ESRD Facility Survey data present state-and network-specific data and treatment modality statistics and includes Medicare and non-Medicare patients. Data from the Facility Survey are complete at the time of reporting (3 months after the year for which data are reported) in contrast to most other PMMIS data which are largely complete after 15 months but continue to be reported for several years. Facility Survey data are a resource for evaluating trends in treatment modality as well as ESRD network-and state-specific incidence, prevalence, and treatment data. The 1978 legislation required that HCFA submit an annual report to Congress on the ESRD program. Three reports were published (HCFA 1979, 1980, 1982). Given the burden of many related reports, Congress, at HCFA's request, rescinded the requirement and permitted the agency to report on the ESRD program in its annual report on the Medicare program. HCFA now publishes an annual series, Health Care Financing Research

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Kidney Failure and the Federal Government TABLE 13-1 Medicare Data Sources and Data Files for ESRD Patients and Providers Form Name HCFA Statistical Files Patient-Specific Information: 1450 Uniform Bill (UB-82) Part B Medicare Annual Data (BMAD) Utilization records with Medicare Parts A and B billing information for beneficiaries including ESRD patients     Hospital Inpatient Stay Record File, PMMIS 2728 Chronic Renal Disease Medical Evidence Report Medical Evidence File, PMMIS 2742 ESRD Patient History and Treatment Plan PMMIS 2745 ESRD Transplant Information Transplant File, PMMIS a ESRD Transplant Follow-up Transplant File, PMMIS 2746 ESRD Death Notification Patient Identification File, PMMIS Provider-Specific Information:   Medicare Certification Approval Notice PMMIS 2744 ESRD Facility Survey Provider File, PMMIS 2552 Cost Report Information System Outpatient dialysis facilities' cost reports a Not applicable. NOTE: The ESRD Program Management and Medical Information System has 6 statistical files; 5 of these files are mentioned above; the 6th file is the Quarterly Dialysis File. Report: End Stage Renal Disease, which provides statistical information on incidence and prevalence of currently entitled Medicare patients stratified by age, gender, race, and primary disease as well as survival analyses on patients who have ever had Medicare entitlement. Separate analyses are presented for dialysis, cadaver transplant, and living-related-donor transplant patients. HCFA has made substantial progress in ESRD data collection since 1977, largely due to the efforts of BDMS and the Office of Research and Demonstrations. HCFA has made ESRD data increasingly available to researchers and others, consistent with a general HCFA policy to make Medicare data available for research purposes. PMMIS and other Medicare data files, although not without problems, have provided practically all the data for

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Kidney Failure and the Federal Government analysis of the ESRD program, whether by HCFA, other federal government agencies, or nongovernmental organizations. Indeed, this committee benefited from HCFA data sharing. U.S. RENAL DATA SYSTEM The USRDS originated from discussions during 1984–85 involving the renal community, Congress, and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). These discussions led in two diverging pathways. First, Congress, in OBRA 1986, passed in October, directed the Secretary to establish a National End-Stage Renal Disease Registry (discussed below). Independently, but proceeding from the same discussions, NIDDK issued a Request for Proposals (RFP) in November 1986 for a renal data system. This reflected an internal decision that epidemiologic research was needed in the context of NIH-sponsored kidney research. In May 1988, NIDDK awarded a contract to the Urban Institute to establish the USRDS, with a subcontract to the University of Michigan.2 The USRDS receives funds and management control from NIDDK; routine HCFA data from the PMMIS Annual Facility Surveys, the ESRD Master Provider File, as well as data from the Transplant Follow-up File, BMAD, and other files; and special studies data from the ESRD networks. In addition, Department of Veterans Affairs (DVA) data not previously reported to HCFA have been added in a PMMIS-like format, but are separate from PMMIS. The mission of the USRDS is primarily epidemiologic, focusing on the causes of ESRD, the effective care of ESRD patients, and other related research of interest to NIDDK and the renal community. Specifically, NIDDK defined four goals for the USRDS: Design and implement a consolidated renal disease data system to provide the biostatistical, data management, and analytical expertise necessary to characterize the total renal patient population and describe the distribution of patients by sociodemographic variables across modalities; Report on the incidence, prevalence, and mortality rates and trends over time by primary diagnosis, treatment modality, and other sociodemographic variables; Develop and analyze aggregate data on the effect of various modalities of treatment by disease and patient group, including examination of the prevention and progression of renal disease with special emphasis on mortality, morbidity, and quality-of-life criteria; and Identify problems and opportunities for more-focused special studies of renal research issues currently unaddressed by the consolidated data system (USRDS, 1990a).

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Kidney Failure and the Federal Government In addition to data drawn from PMMIS, the USRDS incorporates annual census population estimates and data about population characteristics of ZIP codes (USRDS, 1990a). The USRDS also works with HCFA to collect additional data through the 18 national ESRD networks. The structure and contents of the USRDS data base are described in annual data reports (USRDS, 1990a, pp. 81–99). The USRDS issued its first major report in 1989 (USRDS, 1989). That report contains extensive data on incidence, prevalence, patient and graft survival, and institutional providers. It also includes preliminary data from several special studies on the transplant process. The USRDS reports data for all patients who are included in the PMMIS data base, regardless of whether they have current Medicare entitlement (in contrast to the HCFA reports which include only currently entitled patients in incidence and prevalence analyses). The second annual report was published in August 1990 and is substantially expanded from the initial volume. Numerous studies using existing data have been approved by NIDDK. Of 30 reviewed (USRDS, 1990a), eight are under way or have been completed: effect of HLA matching on kidney graft survival; use of Cox's proportional hazards model for observational data; racial differences in incidence of treated ESRD, 1982–87; influence of donor and recipient gender and age in parent-child transplantation; compilation of a national ESRD atlas by county; carpal tunnel syndrome; trends in mortality among dialysis and transplant patients in the United States; and hospitalization among dialysis patients and transplant recipients in the United States. In addition to these eight, 11 studies have been approved for implementation once resources become available. The USRDS also has six special studies under way that involve the collection of new data (USRDS, 1990a): measurement of case-mix severity and its effect on mortality and morbidity (described in Chapter 12); data validation, comparing USRDS data with their sources in the field; renal biopsy as an indicator of specific renal diagnoses and subsequent outcomes; EPO use and quality of life; CAPD and rates of peritonitis; and developmental growth of pediatric patients.

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Kidney Failure and the Federal Government Three additional studies have been approved by NIDDK for possible implementation during 1990–93: EPO, hypertension as a cause of ESRD, and prospective mortality comparisons by treatment modality. This sampling approach via special studies is well ahead of schedule and is only beginning to be exploited. Resources are needed to facilitate the collection and analysis of additional new clinical and epidemiologic data in this regard. The establishment of the USRDS represents a major, and long-overdue, step by the NIH into kidney disease-related epidemiologic research. The committee commends NIDDK for taking this step; it also acknowledges the substantial contribution that the USRDS has made in the brief period since its creation. Its effect is already being felt as researchers and clinicians begin to use its published data to explore a variety of questions. The committee notes a tendency among renal providers to urge that USRDS assume quasi-operational roles in the Medicare ESRD program, especially in the quality assurance area. The committee believes that USRDS should be limited to registry and research functions and that operational responsibilities of HCFA in quality assessment and assurance, for example, should properly be exercised by it. UNITED NETWORK FOR ORGAN SHARING UNOS was created in 1978 as a subsidiary organization of the Southeast Organ Procurement Foundation (SEOPF). SEOPF, a regional organ-sharing entity established in 1973, took this step to expand participation by transplant centers across the country in its organ-sharing activities. In 1986, UNOS was formally separated from SEOPF as an independent nonprofit corporation in anticipation of bidding on the contracts for the Organ Procurement and Transplantation Network (OPTN) and the scientific registry of the recipients of organ transplant called for in the National Organ Transplant Act of 1984. UNOS was awarded both the OPTN and the registry contracts by the DHHS Health Resources and Services Administration (HRSA). The OPTN contract includes the responsibility to develop an equitable, scientific, and medically sound organ allocation system in the United States. In addition, OPTN has been charged with developing policies to promote maximum utilization of organs and with developing standards of quality for acquisition and transportation of donated organs. UNOS implements the registry contract through four subcontracts for organ-specific registries—kidney, heart, liver, pancreas. UNOS and HCFA, in cooperation with HRSA, NIH, and the transplant community, developed common forms by which transplant centers report kidney transplant data to both organizations as well as to USRDS. An annual report is compiled by UNOS and by each subcontracting registry. In late 1990, UNOS published its first scientific registry report on 1988 and 1989 data (UNOS, 1990).

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Kidney Failure and the Federal Government The UNOS report includes statistics on donor demographics (age, gender, race, and ABO blood group); transplant recipient demographics; waiting-list demographic information including age, race, blood group, prior transplants, urgency category, and panel reactive antibody3; organ procurement and disposition; and outcome statistics. Each UNOS participating transplant center receives a semi-annual report that includes national, regional, and center-specific data. The latter includes a list of patients (for review and verification) on whom data were submitted. All UNOS members receive the national data, which is also made available to the public. UNOS is currently conducting a number of research studies. These include the effect of six-antigen HLA matching on renal transplantation outcome, examination of outcomes among Native Americans, and a comprehensive study of waiting-list data. The waiting-list study has recently been completed and submitted for publication. UNOS is developing plans for additional studies. UNOS has relatively few personnel directly responsible for the analysis of its own data, as distinct from personnel who operate the four registries. Although analyses are now beginning to be performed, budgetary constraints may limit the issuance of research reports by UNOS itself. NATIONAL END-STAGE RENAL DISEASE REGISTRY The progress of ESRD data systems under HCFA during the 1980s and the development of USRDS and UNOS are beginning to change the amount and quality of ESRD data available to analysts and others. Unresolved, however, are several issues raised by the OBRA 1986 requirement for a national ESRD registry. Congress, in OBRA 1986, directed the Secretary of DHHS to establish a National End-Stage Renal Disease Registry in order to ''assemble and analyze the data reported by network organizations, transplant centers, and other sources on all end stage renal disease patients.'' This registry was to (1) prepare an annual ESRD report to Congress; (2) identify "the economic impact, cost-effectiveness, and medical efficacy of alternative modalities of treatment"; (3) evaluate "the most appropriate allocation of resources for the treatment and research into the causes of end-stage renal disease"; (4) determine "patient mortality and morbidity rates, and trends in such rates, and other indices of quality of care"; and (5) conduct other analyses to "assist the Congress in evaluating the end-stage renal disease program." The implementation of this statutory requirement has been a matter of confusion and controversy. Many providers mistakenly assumed that the NIDDK's establishment of the USRDS represented implementation of the registry requirement of OBRA 1986. The NIDDK RFP, issued in November 1986, had called for "a consolidated registry ... to meet the needs of

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Kidney Failure and the Federal Government the nephrology and transplant communities concerning the genesis, complications and treatment of End Stage Renal Disease in the United States." It appeared to most careful observers that this action responded to the statute. NIDDK later argued that since an RFP requires 9 to 12 months to prepare, review, and issue, the RFP and the statute were independent events, although close in timing. During this time, however, NIDDK was party to the discussions that led to the legislation and was aware of its progress through Congress. The language of the RFP was similar to the language of OBRA 1986; the term "registry," for example, was used at several key places in the RFP. NIDDK was also in a position in November, following enactment of the statute, to delay issuance of the RFP and remove any ambiguity about the relationship of the RFP to the statute. It did not do so. Moreover, NIDDK prepared the progress report that DHHS submitted to Congress in April 1987 on the implementation of the registry (DHHS, 1987). NIDDK and HCFA were identified as having ongoing activities antedating the law "and that are responsive to the requirements of this law." Reference was made to an "Interagency Agreement to Collaborate in the National End-Stage Renal Disease Patients Registry" and to the fact that NIDDK was in the process of awarding a contract for a "Coordinating Center" for a Consolidated ESRD Data Base for the Epidemiological Surveillance, Genesis, and Complications of ESRD in the United States."4 The report stated: ''Under this contract, data will be collected in a manner that will enable a variety of organizations to perform most of the types of analyses mentioned in P.L. 99–509 (OBRA 1986). Data collection and analysis with respect to economic and cost-effectiveness issues will, however, continue to be performed by the HCFA." The report to Congress, itself a requirement of the 1986 law, explicitly interpreted the NIDDK efforts that led to the USRDS as responsive to OBRA 1986. The view that the USRDS was implementing the registry called for in the statute, then, is an impression derived from NIDDK's initial representation of its actions as responding to the act. On the other hand, the NIDDK RFP referred primarily to epidemiologic purposes and made no mention of economic analyses as called for by OBRA 1986. It did refer, however, to studies of relative efficacy of ESRD treatments "in terms of criteria ranging from mortality rates to quality of life," which might easily be construed as consistent with the statute's expressed concern for mortality, morbidity, and "other indices of quality." Controversy has focused on one substantive issue. Subsequent to the contract award, NIDDK barred USRDS from linking epidemiologic and economic data on the grounds that it (NIDDK) lacked the experience and professional competence to oversee such research and that this type of research is not consistent with the role of NIH. This action was taken, even though the USRDS data base is derived from HCFA administrative data, the contractor has extensive experience in economic analyses

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Kidney Failure and the Federal Government of ESRD data, and no technical barrier exists to linking economic and epidemiologic data.5 HCFA, in response to this limitation of USRDS activity, and under pressure to implement the economic analyses called for by OBRA 1986, issued an RFP in 1990 for studies of the cost-effectiveness of ESRD treatment modalities and of reimbursement for EPO. The Renal Physicians Association argued that these one-time-only studies did not respond to the statute's implied function of continuing studies and should have been assigned to the USRDS as implementing the registry function. The HCFA Administrator, Gail Wilensky, replied that these studies were "intended to be the first, but not the only" HCFA studies directed to responding to the legislative mandate. In fact, in late September 1990, HCFA awarded the economic and cost-effectiveness studies contract to the Urban Institute and the EPO study to investigators at the Johns Hopkins University Schools of Medicine and Public Health. Appointment of the professional advisory group called for in the statute to assist the Secretary in formulating policies and procedures for the registry was long delayed. However, it was chartered in January 1990, and its members were appointed in October 1990. The committee concludes that DHHS is currently engaged in a complicated search for a satisfactory way to implement the 1986 statute. With respect to the registry functions, the status is as follows: Epidemiologic analyses are being performed by USRDS and currently are based on HCFA data. Special studies are under way using data collected through the ESRD networks and other sources (e.g., National Medical Care). NIDDK has barred USRDS from conducting analyses that link epidemiologic and economic data. HCFA has recently awarded a contract to the Urban Institute which responds, in part, to the OBRA 1986 call for cost-effectiveness studies. Analyses of mortality and morbidity are being performed by USRDS. Data collection for a retrospective study of patient case-mix complexity has been completed by USRDS, and a prospective study of case mix has been recommended by its Scientific Advisory Committee. The development of "other indices of quality" has been barred by NIDDK. OBRA 1986 is quite cryptic about quality studies, implied by the last point above. The quality-related activities of USRDS are very important. However, they do not respond adequately to all the quality assurance (QA) needs of the Medicare ESRD program, which this committee has emphasized strongly in the previous chapters. The ESRD program QA function involves more than data. It includes the development of measures and instruments specific to the ESRD setting and the conduct of supporting

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Kidney Failure and the Federal Government research. These activities are not a registry function. They require the active involvement of physicians trained analytically in health services research, especially quality assessment, functional-and health-status assessment, severity-of-illness adjustment, and related fields. This argues for augmenting the expertise of the nephrology community with that of the health services research community. The ESRD program QA function, moreover, is appropriately a government responsibility. The authority for its exercise with respect to Medicare and the ESRD program clearly resides with HCFA. It is essential that HCFA, in concert with the renal community, develop this QA function. Moreover, with respect to the registry, it is important that the respective roles of government agencies and private contractors be recognized and that the registry not be expected to assume quasi-operational responsibilities better performed by the government. The committee concludes that the Secretary of DHHS should fully implement the three OBRA 1986 registry functions of epidemiologic research, economic and cost-effectiveness studies, and the development of measures of quality. The options facing DHHS relative to the implementation of the registry provision of OBRA 1986 are these: (1) agree to a joint NIH and HCFA effort by which USRDS fulfills all registry functions; (2) have HCFA conduct the economic analyses internally or through an outside research organization; and (3) authorize USRDS to fulfill the QA data function as long as HCFA undertakes a broader QA effort that includes the development of measures and instruments and the conduct of supporting research. At a minimum, the renal data system should be continued another 5 years beyond the USRDS contract expiration in 1993. Second, in the next 2 years, the unresolved issues of the relationship of USRDS to all of the OBRA 1986 registry requirements should be clarified, and ways should be found to fully implement the statute. If registry functions cannot be performed under existing arrangements, it may be appropriate to consider a transfer of the data system from NIDDK to another agency, perhaps the Agency for Health Care Policy and Research or the Centers for Disease Control, either at the time of the contract renewal or earlier. Third, a broader agenda of research in epidemiology, economic analysis, and quality assessment and assurance should be undertaken, along lines set forth in Chapter 14. ADEQUACY OF DATA SYSTEMS Medicare's data systems (billing and payment records, cost reports, and PMMIS) provide information for examining most ESRD policy questions. In comparison to Medicare in general, the ESRD program is rich in data.

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Kidney Failure and the Federal Government There remains, however, a continuing lack of information necessary to evaluate certain aspects of the ESRD program. This is especially true regarding the clinical and functional status information to assess and ensure quality: primary diagnosis of renal failure, secondary diagnosis, comorbid conditions, and initial functional status. It is necessary to replace the existing medical evidence form with a new form that systematically captures these data. For primary diagnosis, the care and accuracy with which these data are recorded can be improved by means of a checklist with clear guidance to clinicians regarding its use. Differentiation of Types I and II diabetes mellitus, not currently recorded, is especially needed, perhaps in conjunction with a measure of functional status. In addition, ethnicity data are not adequate, especially for the Hispanic population. HCFA purged the data collection forms of any question about Hispanic patients a few years ago largely because few data were being reported. This occurred at a time when the Census Bureau projected that the Hispanic population would grow from 14 percent of the U.S. population today to 20 percent by the year 2000. Furthermore, epidemiologic evidence suggests that Hispanics have a higher incidence of renal failure than non-Hispanic whites. The ability of HCFA and the federal government to track this population group should be vastly strengthened. Similarly, the demographic and epidemiologic characteristics of ESRD patients not eligible for Medicare coverage are not known. Data do not exist on the economic status of ESRD patients, including the availability of private health insurance, the effect of the Medicare-as-secondary-payer provision on patient coverage, and the effect on individuals and families of loss of kidney function. Regarding providers, more detailed information is needed about hospital units (backup units versus the equivalent of freestanding units), exceptions status, and ownership and chain affiliation. RECOMMENDATIONS The committee recommends that: With respect to ESRD data, HCFA maintain a strong ESRD data acquisition and analysis capability; modify the patient medical evidence form to collect data on comorbid conditions, risk factors, functional status, and other factors bearing on treatment and outcomes; identify data needs for systematically analyzing the relationships between resource use, treatment, and patient outcomes; fund research pertinent to these questions; and provide publicly available tapes for research on all aspects of the ESRD program to the interested research community.

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Kidney Failure and the Federal Government The U.S. Renal Data System be authorized to conduct research linking epidemiologic and economic data on the ESRD patient population, and that the special-studies sampling approach be exploited to its full potential. With respect to the United Network for Organ Sharing, resources be provided to sustain and strengthen its data analysis capability; that UNOS continue, as planned, to collect follow-up data on transplant patients who lose Medicare eligibility after 3 years; and that the collaboration in generating common data forms between the transplant community, HRSA, HCFA, NIH, and UNOS be seen as a possible model for emulation in the dialysis area. With respect to the National ESRD Registry, the Secretary of DHHS take all steps necessary within the next 2 years to fully implement all functions of the National ESRD Registry called for in OBRA 1986; that the renal data system be continued another 5 years when the current USRDS contract expires and that the contract be recompeted at that time; and that consideration be given at the time of such contract renewal to the transfer of the data system function to another agency if jurisdictional disputes continue to hamper implementation of the statute. With respect to the ESRD program quality assessment and assurance efforts called for by this committee, USRDS efforts be augmented by an appropriate HCFA effort to develop or adapt QA measures and instruments for the ESRD setting and that the necessary related research be supported. NOTES 1.   Dr. Philip J. Held, a member of the IOM ESRD committee and Director of the U.S. Renal Data System Coordinating Center, was not present at the committee meeting of October 4, 1990, at which this chapter was discussed, and he did not participate in the discussion leading to the recommendations that were adopted. 2.   Both the Urban Institute and its USRDS subcontractor, the University of Michigan, conduct ESRD research independent of the USRDS. 3.   The waiting-list data are subgrouped by time on the waiting list. Thus one can compare time on the waiting list between various age groups, by race, gender, and so on. 4.   The cooperative agreement between NIH and HCFA remained unsigned at the time this report was written in October 1990. 5.   In fact, the economic and epidemiologic data transmitted by HCFA to USRDS must be separated before being entered in the renal data system, a step that actually impedes the epidemiologic analyses.

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Kidney Failure and the Federal Government REFERENCES DHHS (U.S. Department of Health and Human Services). 1987. Report to Congress on National End-Stage Renal Disease Patient Registry Required by P.L. 99-509. Washington, D.C.: April. HCFA (Health Care Financing Administration). 1979. End-Stage Renal Disease Program: Annual Report to Congress, 1979; P.L. 95-292, 1881(g). Washington, D.C. HCFA. 1980. End-Stage Renal Disease Program: Second Annual Report to Congress, FY 1980. Washington, D.C. HCFA. 1982. 1981 End-Stage Renal Disease Annual Report to Congress. Washington, D.C. UNOS (United Network for Organ Sharing). 1990. Annual Report on the Scientific Registry for Organ Transplantation and the Organ Procurement and Transplantation Network, 1988 & 1989. U.S. Department of Health and Human Services. Washington, D.C. USRDS (U.S. Renal Data System). 1989. Annual Report. National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, August. USRDS. 1990a. Annual Report. National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, August. USRDS. 1990b. Gold Notes. Washington, D.C. March 30.