Surveillance
This section describes surveillance activities and programs of the Federal government related to chronic kidney disease.
Centers for Disease Control and Prevention (CDC)
In collaboration with the Johns Hopkins University and the University of Michigan, CDC is working to establish a national surveillance system for chronic kidney disease (CKD). Its purpose is to identify existing local and national sources of CKD data; identify gaps and deficiencies in the existing data sources; and propose creative solutions to fill the gaps and remedy the deficiencies. The project will then examine the need for creating new data sources related to CKD and develop a plan to integrate all data sources into a functional surveillance system. CDC will carry out a feasibility study of the plan for the surveillance system, pilot test of the surveillance system, and deliver final report to the CDC with recommendations.
CDC is also providing supplementary funding to the National Health and Nutrition Examination Survey for the collection and analysis of a laboratory specimen for creatinine and albumin. In the next survey cycle, the program will be pilot testing the collection of a second urine specimen for albumin analysis. The second specimen will be collected by the study participants in his/her home and mailed to the laboratory for analysis. National Center for Health Statistics will direct the data collection contractor in establishing and revising protocols for the nephrology component and in preparing training and field manuals.
Contact Information
Desmond Williams, MD, PhD
CKD Initiative Team Lead, CDC Division of Diabetes Translation
Phone: 770–488–1158
Email: DEWilliams@cdc.gov
Web: www.cdc.gov/diabetes/projects/kidney.htm
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Centers for Medicare & Medicaid Services (CMS)
CMS maintains a list of end-stage renal disease (ESRD) contacts that is distributed (via email) regarding issues that are significant to ESRD providers. CMS maintains a partnership with the National Kidney Foundation and other organizations on issues of interest to ESRD and chronic kidney disease patients, such as information about the availability of low-income subsidy for low-income beneficiaries and caregiver efforts.
Contact Information
Barbara Cebuhar
Phone: 202-260-1020
Email: Barbara.cebuhar@cms.hhs.gov
Other surveillance efforts include monitoring and on-site support surveys and enforcement procedures. CMS also provides certification for new suppliers and services.
Contact Information
Roger Perryn
Phone: 816-426-6416
Email: roger.perryn@cms.hhs.gov
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Health Resources and Services Administration (HRSA)
The Organ Procurement and Transplantation Network (OPTN) collects and manages scientific data about organ donation and transplantation. OPTN maintains a secure Web-based computer system, which maintains the nation's organ transplant waiting list and recipient/donor organ characteristics.
The Disease Transmission Advisory Committee (DTAC) is an ad hoc Organ Procurement and Transplantation Network committee composed of organ procurement organizations, transplant center coordinators, transplant surgeons, and infectious disease, malignancy, and pathology specialists.
One of the Operations Committee’s directives is patient safety and disease transmission events. DTAC assists the United Network for Organ Sharing (UNOS) staff, organ procurement organizations and transplant centers during a disease transmission event.
Contact Information
Richard Durbin
Acting Director, Division of Transplantation
Phone: 301–443–6804
Email: RDurbin@hrsa.gov
Web: www.ask.hrsa.gov/Organ.cfm
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Indian Health Service (IHS)
The burden of kidney disease among diabetics has been monitored for several years by the IHS Diabetes Program through a yearly chart audit, and includes measure of kidney function, abnormal protein excretion, and blood pressure control. The IHS Diabetes Care and Outcomes Audit (“the Audit”) is a process for assessing diabetes care and health outcomes for American Indians and Alaska Natives with diagnosed diabetes. IHS, Tribal, and Urban Indian health care facilities nationwide voluntarily participate in this process each year by performing a self-audit of medical records for their patients with diabetes. By carefully reviewing the results of individual audits, facilities can identify areas for improvement and implement strategies to work toward the goal of providing all diabetes patients with the highest quality of care, as outlined in the IHS Standards of Care for Patients with Type 2 Diabetes.
Contact Information
Karen L. Sheff, MS
Biostatistician/Data Manager
Phone: 505-248-4965
Email: Karen.Sheff@ihs.gov
Web: www.ihs.gov/MedicalPrograms/Diabetes/index.cfm?module=resourcesAudit
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National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States. The USRDS is funded directly by NIDDK in conjunction with the Centers for Medicare & Medicaid Services (CMS). USRDS staff collaborates with members of CMS, the United Network for Organ Sharing (UNOS), and the ESRD networks, sharing datasets and actively working to improve the accuracy of ESRD patient information.
Along with producing the Annual Data Report on End-Stage Renal Disease in the United States, the USRDS also produces the Researcher’s Guide, fulfills data requests, provides standard analysis files and specialized datasets to researchers, and presents the results of its research at national conferences and in peer-reviewed journals.
Contact Information
Paul Eggers, PhD
Director, Kidney and Urology Epidemiology Program
Phone: (301) 594-8305
Email: EggersP@extra.niddk.nih.gov
Web: www.usrds.org
This information was reviewed by KICC agency representatives. It may not reflect new or future agency activities. For more information, please contact the listed representatives. |
