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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Improving the understanding, detection, and management of kidney disease.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Activities

Scientific Research

This section describes basic and clinical research activities supported or sponsored by the Federal government.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

The Chronic Renal Diseases Program supports basic and clinical research on renal development and disease, including: (1) causes, pathogenetic mechanisms, and pathophysiology; (2) morphological and functional markers and diagnostic measures; (3) underlying mechanisms leading to progression of renal disease; (4) functional adaptation to progressive nephron loss; (5) natural history of progressive renal diseases; and (6) identification and testing of possible therapeutic interventions to prevent development or halt progression of renal disease. Research in this program includes the primary glomerulopathies and renal disease from systemic diseases that collectively account for more than 80 percent of all cases of treated end-stage renal disease.

Contact Information
Lawrence Agodoa, MD
Director, Office of Minority Health Research Coordination
Phone: 301-594-1932
Email: agodoal@extra.niddk.nih.gov
Web: www2.niddk.nih.gov/Research/ScientificAreas/Kidney/BCKD.htm

The Chronic Renal Insufficiency Cohort (CRIC) Study is a prospective observational cohort study of nearly 4,000 men and women with mild to moderate chronic kidney disease (CKD). The study population includes about one-half African Americans and one-half is composed of persons with diabetes; two subgroups at increased risk for CKD. The objective of this nationwide study is to identify factors associated with rapid decline in kidney function and factors associated with worsening of pre-existing or development of cardiovascular disease. The study will also develop predictive models to identify high-risk subgroups and identify etiological factors for future trials to reduce the burden of CKD and its associated morbidity. Participants will be followed for up to 10 years. A number of ancillary studies will examine genetic, behavioral, nutritional, associated morbidity (e.g., eye disease) and other factors for CKD.

Contact Information
John Kusek, PhD
Senior Scientific Advisor, Division of Kidney, Urologic, and Hematologic Diseases
Phone: 301-594-7735
Email: kusekj@extra.niddk.nih.gov
Web: www.cristudy.org

The CKiD study examines CKD progression and its effects in children ages 1-16. It aims to determine risk factors for progression of pediatric CKD and to examine the impact of CKD on neurocognitive development, risk factors for cardiovascular disease, and growth. The current phase of the study is scheduled to end in 2013. The manuscript describing the baseline characteristics of the cohort has been accepted for publication by the Clinical Journal of the American Society of Nephrology.

Contact Information
Marva Moxey-Mims, MD
Director, Pediatric Nephrology & Renal Centers Programs
Phone: 301-594-7717
Email: marva.moxey-mims@nih.hhs.gov
Web: www.statepi.jhsph.edu/ckid

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Public Education & Outreach

This section describes current outreach and education programs of the Federal government related to chronic kidney disease.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

To educate populations at risk for kidney disease, NKDEP provides easy-to-read educational materials for the general public, African Americans, and Spanish-speakers. NKDEP's Kidney Connection campaign encourages African Americans to "make the kidney connection" between diabetes, high blood pressure, and kidney disease; and get tested for kidney disease. The campaign is currently composed of two efforts: The Family Reunion Initiative and Kidney Sundays. NKDEP also offers educational materials for parents about the importance of testing children at risk for kidney disease.

NKDEP aims to educate people with CKD about how to better manage their disease. It offers an overview brochure on CKD, a brochure on medication use, and a series of tip sheets on nutrition and CKD.

NKDEP supports patient education by providing resources and tools that help health professionals better educate their patients about CKD. The Explaining Your Kidney Test Results: A Tear-off Pad for Clinical Use is intended for health professionals to use when explaining kidney test results with patients. This tool is available in Spanish, Chinese, and Vietnamese. NKDEP also offers materials for registered dietitians and clinical pharmacists to use when counseling patients with CKD. Lastly, for health professionals, NKDEP's website features videos that model ways to answer common patient questions (in English and Spanish) on a wide series of topics related to CKD and kidney failure.

Contact Information
Andrew S. Narva, MD, FACP, FASN
Director, NKDEP
Phone: 301-594-8864
Email: narvaa@niddk.nih.gov
Web: www.nkdep.nih.gov

Eileen Newman, MS, RD
Associate Director, NKDEP
Phone: 301-435-8116
Email: eileen.newman@nih.gov
Web: www.nkdep.nih.gov

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the NIDDK. The NKUDIC develops, publishes, houses and distributes publications about kidney and urologic diseases and promotes publications through health fairs and community events.

NKUDIC also responds to inquiries about kidney and urologic diseases—ranging from information about available patient and professional education materials to statistical data. The website includes a consumer-friendly listing of patient-advocacy organizations.

Contact Information
Jody Nurik
Phone: 301-496-3583
Email: jody.nurik@nih.gov
Web: kidney.niddk.nih.gov

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Professional Education & Outreach

This section describes education and outreach to health professionals of the Federal government related to chronic kidney disease.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

The National Kidney Disease Education Program (NKDEP) provides information, tools, and materials to a variety of health professionals to improve their knowledge and practice related to kidney disease detection, education, and treatment. Tools include the online glomerular filtration rate (GFR) calculators and the Nephrology Referral Form for use by primary care providers to share patient data with the consulting nephrologist. Reference materials include the Quick Reference on UACR/GFR fact sheet and CKD and Drug Dosing: Information for Providers. NKDEP also hosts webinars for health professionals on various topics such as "Improving Outcomes in Chronic Kidney Disease." NKDEP offers a suite of materials to help general practice registered dietitians (RDs) provide effective medical nutrition therapy to CKD patients who are not on dialysis. NKDEP is also collaborating with the American Dietetic Association to develop a certificate training program for RDs.

NKDEP and its Laboratory Working Group use a variety of channels to keep the clinical chemistry community informed about creatinine standardization and efforts to standardize measurement and reporting or urine albumin. Information is disseminated through the website, e-newsletters, and professional meetings.

NKDEP supports patient education by providing resources and tools that help health professionals better educate their patients about CKD. The Explaining Your Kidney Test Results: A Tear-off Pad for Clinical Use is intended for health professionals to use when explaining GFR and urine albumin test results with patients. The pad is available in English, Spanish, Chinese, and Vietnamese. In addition to the tear-off pad, NKDEP's Chronic Kidney Disease and Medicines: What You Need to Know brochure encourages CKD patients to turn to pharmacists for information and support. Lastly, NKDEP's website features videos that model for health professionals ways to answer common patient questions (in English and Spanish) on a wide series of topics related to CKD and kidney failure.

Contact Information
Andrew S. Narva, MD, FACP, FASN
Director, NKDEP
Phone: 301-594-8864 Email: narvaa@niddk.nih.gov
Web: www.nkdep.nih.gov

Eileen Newman, MS, RD
Associate Director, NKDEP
Phone: 301-435-8116
Email: eileen.newman@nih.gov
Web: www.nkdep.nih.gov

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Surveillance

This section describes surveillance activities and programs of the Federal government related to chronic kidney disease.

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 CKD and 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

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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.

Page last updated: June 6, 2012